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By Rose Hoban
Samuel Robinson, a 9-year-old with autism spoke into the microphone at the legislative building Tuesday morning, calling out greetings, “Hi Tina,” to good-natured laughter from lawmakers and families in the press conference room at the North Carolina General Assembly building.
His father Kyle Robinson choked up when he talked about the fact that in the past Bobby had been non-verbal.
“From a little boy that, as a dad, you don’t know if he’s ever gonna… if he’s ever going to say ‘Hey Da-da, or give you a hug,’” Kyle Robinson said.
He explained that Samuel has been receiving applied behavior analysis therapy since he was 2-years-old. Over recent decades, ABA therapy has emerged as one of the most effective modalities of care for children with autism.
“Now, he talks all the time,” the elder Robinson said to more good-natured laughter as Samuel interrupted him.
What brought the Robinsons and other families to the legislative building this week is the introduction of a bill intended to make it easier for ABA therapists to practice in North Carolina. According to bill sponsor John Bell (R-Goldsboro), the bill will be “hugely beneficial to families across the state.”
“The positive impact [of ABA] has been on families and those with autism cannot be overstated,” he said.
“North Carolina is the only state in the country where behavior analysts who provide highly effective treatment to children with autism are unable to practice independently,” he explained later in the morning to the House Health committee. “Under current state regulations, qualified professionals must operate under the supervision of a licensed psychologist.”
Bell’s bill, House Bill 91 (which has a parallel Senate bill, SB 103) has more than 50 co-sponsors from both sides of the aisle. It would remove that supervision requirement, create a path to independent licensure, establish a licensing board to oversee ABA therapists and allow for the therapists to bill health insurers from commercial plans to government payers, such as Medicaid.
Bell and other co-sponsors say that it will also make the therapy more accessible to families who have children with autism around the state. Whether the bill will make a significant difference, however, is somewhat in doubt.
Since 2015, ABA therapists have been able to be reimbursed for their treatments by insurers in North Carolina, after a long fight. The original bill allowing for the billing was introduced in several prior legislative sessions, and former House speaker Thom Tillis championed the measure.
ABA treatment can be ”intense,” explained Lorri Unumb, a then-representative of the advocacy group Autism Speaks, who led the charge in North Carolina to get the reimbursement bill passed for several years.
The treatment uses positive reinforcement and repetition – sometimes extreme repetition – to help break through the communication difficulties these children have and help them learn basic skills. Specially trained and certified therapists take each skill – from feeding oneself to bathing and dressing, even waving good-bye – and break it down into component parts.
Unumb told NC Health News in 2013 that the therapy works better the younger the children start, but it is usable for older kids too, and even adults.
“So much of learning that children do is based on imitation, but a lot of severely impacted children don’t have that skill,” Unumb said.
That level of one-on-one interaction doesn’t come cheap. It’s time-consuming – requiring as much as 40 hours in a week – and it must be delivered by a therapist who can interpret incremental progress in the child.
But families like the Robinsons say it’s allowed them to have more interaction with their children and helped Bobby move through the world more easily. Other families say they’re grateful for ABA training their children to do things such as toileting and dressing themselves.
Board-certified behavior analysts, or BCBAs, have to complete graduate-level education, pass a board certifying exam and complete as much as 2,000 hours of supervised practice in order to be licensed. Thirty-one states now license the therapists to practice, but according to Bell, no other state has the supervision requirement that North Carolina does.
“There are a total of 62 psychologists in all of North Carolina that are qualified to provide this type of supervision,” said Matt Filer, who runs Mosaic Pediatric Therapy, the largest company in the state providing ABA services. “That’s 62 supervisors for over 65,000 children with autism.”
“This regulation … strangles job growth by discouraging BCBAs from coming to our state, and dissuading young North Carolina professionals from pursuing careers as BCBAs,” Filer said. “To meet the current needs, North Carolina must add 6,000 new board-certified behavior analysts and that is an impossibility under current regulation.”
Loosening up licensure for BCBAs in North Carolina may not provide the relief that parents are looking for anytime soon.
A review of the landscape published in late 2019 found there are just too few BCBAs in the entire U.S. Researchers used national data from the Behavior Analyst Certification Board and found that only Massachusetts had enough practitioners to meet demand. North Carolina had only about one provider per 100 children who needed services when the study authors found that about six providers would be enough to satisfy the unmet need. Florida had the most ABA providers in the Southeast with less than four practitioners per 100 children with autism spectrum disorder.
“Workforce policies are needed to increase the supply of ABA providers if we want to increase access to these services,” said senior author Janet Cummings, from Emory University in a press release on the study. “If there are not enough ABA providers in a community, then efforts to improve early screening and identification will not necessarily lead to an increase in the receipt of ABA among youth in need of these services.”
An investigation by North Carolina Health News done in 2018 also found there were only a few hundred therapists in the state at the time, resulting in long waits for access to services. That number has ticked up to about 650 therapists in the state, plus about 1850 behavior analysis technicians who carry out the bulk of daily treatment.
The supervision requirement creates an additional hurdle, according to Monique Baker, who runs a small company staffed with BCBAs and technicians who provide services to about 50 children.
“Recently, the licensed psychologist supervising all of our BCBAs had to resign effective the end of this month,” she said during Tuesday’s press conference. “I placed ads in agencies across the state, utilized social media, reached out with personal emails and have not been able to locate one single qualified individual to supervise the services that we provide for children with autism.
“This North Carolina-specific barrier creates huge issues with access to care, causes long waitlists and forces higher cost to businesses. It also serves to create situations such as mine.”
Another scope of practice fight
BCBAs are not the only health care professionals who are looking to be released from similar supervision requirements, all advanced practice nurses such as certified registered nurse anesthetists and certified nurse midwives have long looked to be released from supervision requirements. The state’s medical societies have pushed back against eliminating supervision requirements for years.
Releasing BCBAs would be a first in the state, and it seems more likely to happen given the state’s psychological association has expressed support for the bill.
“We appreciate the opportunity to help craft language for the bill so that it provides the best licensure bill possible and maintains the integrity and scope of practice of other professions,” wrote North Carolina Psychological Association executive director Martha Turner-Quest in a statement sent to NC Health News.
But the Psychological Association has supported the measure before. An almost identical bill, House Bill 671, was filed in the last long legislative work session in 2019. It also would have created a pathway to licensure for the ABA therapists and a governing board to regulate them. It passed the House of Representatives almost unanimously but died after being sent to the Senate without getting a hearing.
“This bill is a step in the right direction,” said Rep. Gale Adcock (D-Cary), who is a nurse practitioner and has long pushed for removing the so-called scope of practice restrictions. “We, as a legislature, should pursue the removal of all unnecessary regulations for all providers, because citizens deserve the care that they need to be able to get the care they need.”
Adcock explained that there’s some support for removing scope of practice restrictions in the state senate, but noted that some in that chamber have resisted adding new licensing boards.
Nonetheless, she noted that there are some powerful senators who she believed would be in support.
“If it gets through the Senate, and it passes, what this says is we have a legislature that understands that too much regulation can prevent people from getting the care they need,” Adcock said. “It shows an enlightened legislature that’s willing to consider where can you do the most good, to lift this regulation and allow people to get the care they need.”