‘Parents Are Desperate’: Parent-Led ABA Provides Tantalizing Remedy to Autism Therapy’s Challenges

Parent-led applied behavior analysis (ABA) could relieve some of the most crippling challenges in the autism therapy industry. However, complicated questions about funding will likely prevent the widespread adoption of this little-practiced care delivery model.

Sometimes referred to as parent-mediated ABA, advocates and experts described this model as a return to the roots of ABA, the autism therapy industry’s chief clinical intervention. A key objective of parent-led ABA is to maximize access to care at a time when access challenges are the norm.

The practice helps parents become something like live-in registered-behavior technicians (RBTs). Experts interviewed by Behavioral Health Business say the practice is used more internationally than in the U.S., partly because this model sidesteps a critical bottleneck in care delivery: recruiting and retaining RBTs.

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Parent-led ABA is often a cheaper alternative to conventional in-home or in-center ABA, and awareness about the practice is growing among parents and providers, several sources have told BHB. 

For years, autism therapy providers have been plagued by high turnover as low payer reimbursements press down RBT wages, forcing providers to compete with retail and food service companies for employees. Removing or reducing the role of RBTs in ABA, in turn, lessens the staffing costs of provider organizations. And by placing the implementation of interventions in the hands of parents, families and providers can invest significantly less time in face-to-face care interactions.

“Families need options, and we need to have more than one ABA delivery model,” Dr. Doreen Samelson, chief clinical officer for the nonprofit Catalight, told BHB. “If you look at those extra [recruiting] costs, which can be hard for agencies to bear, and balance that with parent-led ABA, you can pull down the costs. You can also increase access.”

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Samelson cautioned against thinking of parent-led ABA as a cure-all or complete replacement of conventional care models since that would also limit options for parents and families. Still, increased use of parent–mediate ABA has significant upsides.

Research by IDD care and services provider Catalight finds that, on some measures, parent-led ABA can have better outcomes than other models of ABA. In one study, Catalight also found comparable outcomes for children receiving much fewer care hours than is considered the norm in the industry.

Enabling parents and the rise of clinics

In most autism therapy settings, RBTs spend most of their time implementing or practicing the behavior plans created and overseen by masters-level or higher board-certified behavior analysts (BCBAs). Conventional models call for parents and children to spend hours-on-hours a day, in some intensive cases up to 40 hours a week, in a clinic or with a professional in a family’s home.

The time investment to get ABA can create challenges for families, on top of other barriers to care such as high health plan deductibles, time commitments for work and transportation.

Instead, the child’s caregiver spends a fraction of the time with providers learning about interventions for dedicated learning sessions at home and during the parent’s daily life with the child.

“I’ve had several parents say that at the end of our time together, ‘I definitely want my kids to get one-on-one services,’” Ashley Simmons, BCBA for Easterseals of North Georgia, told BHB. “‘But I now know how to interact with my kid, how to engage, how to deal with the tantrums and restrictive or repetitive behaviors I didn’t feel equipped to deal with before.'”

Simmons also works with the State of Georgia’s autism early intervention program, Babies Can’t Wait.

Having parents provide the bulk of care and implement teaching and training strategies was the norm in the earliest days of ABA. Several sources pointed to the approach Ivar Lovass, a behaviorist and researcher considered the father of ABA, took, which called for training teachers and parents to perform interventions.

As the practice of ABA started to professionalize and rates of autism diagnosis started to increase in the 1990s, parents began to organize treatment collectives, seeking out treatment providers and advocating for health plans to help pay for care. In its earliest days, the Center for Autism and Related Disorders (CARD) eventually became the largest provider of autism therapy in the U.S. by working with local advocates and parents to identify where to place centers.

What grew along with the centers was an ethic of separating the roles of parent and provider. In part, this was to avoid ethical considerations of self-interest as well as more sticky questions about whether or not parents should be paid for providing the interventions themselves. An outgrowth of parents and advocates pushing for states to mandate health plan coverage of autism services led to the modern convention of focusing implementation through RBTs.

Jodi Rumph, the owner of Family Strategies in Cedar Park, Texas, and parent of an adult child with autism, said parents have had to provide ABA therapies since the beginning, citing a Lovaas demonstration project in her home state of Alaska. She said in her mind that parents were, in effect, trained to be RBTs. BCBAs would remotely train and assess parents by viewing video recordings of sessions. RBTs weren’t a part of the autism treatment clinician spectrum when Rumph’s child was young, she said.

“We always were pushing for insurance coverage way back in the 90s because we needed help: We couldn’t do it all by ourselves,” Rumph said. “We needed funding; we needed the BCBAs to exist, access to RBTs to exist.”

But now, the collective autism therapy center infrastructure is buckling under the weight of high demand. It’s common for waitlists at some clinics to take months, even years, to clear. One study finds that 61% of autism therapy centers have waitlist times of four months or longer. The same report finds that 21% of providers were not taking new referrals or had wait times of a year or more.

“When you have a two-year-old needing early intervention, a [years-long] waitlist is ridiculous because they will lose their opportunity for that early intervention to be most effective by the time they get off that waitlist,” Rumph said.

Trade-offs and questions in parent-led ABA

Simmons said that the payers that do recognize parent-led ABA pay hour rates are half of what BCBAs are paid for supervising RBTs, presenting an infeasible situation for providers to focus too much on the practice. The Easterseal entities are nonprofits, allowing them to turn to charity and grants to make up for whatever operational shortfalls there are in providing services to their communities.

Challenging reimbursement environments disincentivize providers, regardless of tax status, from investing in new services unless there is a pressing need to do so. Some ABA providers seeking to provide some level of service to those on their waitlists may look to parent-led ABA to engage with families as a bridge until they can get into the clinic.

Further, autism therapy providers face several pressures demanding they diversify their treatment locations, delivery modes and clinical services.

“I don’t think it’s usually a very good idea to just do one thing,” Samelson said.

Whatever would be lost in revenue by providing parent-led ABA could be made up for in better retention rates of clinicians, Samelson added, noting that reduced commitments to one-on-one treatment could alleviate burnout.

There is also a chance to save time with reduced no-shows, Allison Berard, a BCBA with Easterseals Northeast Central Florida and director of behavior support services, told BHB.

“If you have someone committed to providing that service at your door asking for help, you wouldn’t be as likely to deal with cancellations,” Berard said.

However, there is a tradeoff. If the parent is unavailable for training or can’t provide the interventions, that’s a total loss. Whereas, there is likely to be additional RBTs to provide interventions if one is not available.

Another tradeoff comes from the ethical and financial considerations of effectively replacing RBTs in the provision of ABA.

Several unsettled questions pervade parent-led ABA. Should parents get paid to provide these services to their own children? What prevents poor training or implementation? Who certifies the quality of the training or the interventions when parents provide them? What prevents parents from being taken advantage of by unscrupulous autism therapy providers?

“Parents are desperate; I was desperate. That’s why I’m so passionate about this,” Rumph said. “But when there’s no oversight, that’s when bad things happen.”

Rumph supports the idea of paying parents to do parent-led ABA. It would incentivize parents to engage with providers and for providers to ensure that they don’t run afoul with payers over quality. It would help spread ABA to more families more quickly than the status quo.

Some think that parent-led ABA is more about helping parents use ABA to be better parents, not to become a formal part of their children’s care team.

“I don’t want mothers and fathers and grandparents and brothers and sisters who lose their traditional roles to the degree that those are beneficial to the family in doing this,” Berard said. “If a provider is going this route, they need to be really thoughtful about how they build it out.”

Samelson said parent-led ABA is as effective as traditional models and shouldn’t be seen as a supplement or less intensive than conventional ABA. And when provided to empower parents, she doesn’t see any ethical conflict with parents providing ABA therapy to their children.

Catalight doesn’t pay parents in its parent-led ABA model.

Some providers consider paying parents to provide therapy to their children as RBTs. For example, the San Francisco-based startup Forta Health will train parents to become RBTs as certified Behavior Analyst Certification Board (BACB), hire them as employees and provide BCBA supervision.

The company uses “a vertically integrated care approach and combines individualized, one-on-one care with clinical-grade AI algorithms,” according to a blog post by Alumni Ventures Group.

Forta Health is getting the attention of investors. Funds affiliated with Alumni Ventures Group and Insight Partners participated in two Series A rounds over the summer of 2023. The blog didn’t state and a cursory review of SEC filings don’t show how much the company has raised.

Forta Health has not responded to several attempted requests for comment.

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