Wait times are the manifestation of several parts of the autism therapy industry being out of balance.

Despite the significant expansion of access to treatment service providers, the process of going from parent concern to diagnosis to treatment is slow-moving and full of opportunities for potential delay. This results in a nuanced system fractured along clinical specialties and exacerbated by shortages and administrative burdens. Truly addressing the challenge requires systemic change. In the meantime, providers can work on incremental issues to boost access.

It’s hard to pinpoint a typical wait time to give a basis for a discussion about wait times. Anecdotally, Behavioral Health Business hears from many professionals in and around the industry that months-long wait times are typical, and extreme examples in select regions with worse-than-normal provider shortages can see delays of up to a year.

But there is little definitive data, and various sources paint a conflicting picture.

A survey by Eastern Michigan University and the Autism Alliance of Michigan released in 2022 found that about 73% of caregivers of an autistic patient reported their family member was waitlisted. The median wait time was 5.7 months. This wait time didn’t change when caregivers’ charges were placed on multiple waitlists, of which about half of the survey respondents did. And that was for treatment.

However, a survey conducted in December by the special education and behavioral health software company RethinkFirst found that 62% of BCBAs could see patients within four weeks; 15% had a 6-month or longer wait time. However, most survey respondents worked at smaller organizations. About 54% of survey respondents worked at organizations with 11 to 99 employees.

Wait times to get care in autism therapy clinics represent only part of the patient and family journey. Even before being placed on a waitlist at a clinic, patients and families often face waiting to the point where care is relevant. Diagnosticians able to assess autism are in short supply in the U.S. One survey of providers published at the CMS Health Equity Conference found that about 61% of those seeking an autism diagnostic battery had to wait more than four months to be seen, with about 15% reporting a yearlong wait. 

This is problematic because so many clinicians in the autism therapy industry are focused on the treatment of and services for those already diagnosed with autism. Only clinicians such as highly specialized pediatricians, neurologists, psychiatrists and certain psychologists can diagnose autism spectrum disorders.

“It’s not within my scope to diagnose no matter how many years I’ve worked with individuals with autism,” Nissa Van Etten, director of clinical training and CR Institute at CentralReach, told BHB. “I want to do everything I can to serve them, to live the most fulfilling life, and become the most independent they can be. However, that means I need my counterparts and colleagues in other spaces with their expertise to diagnose them.”

Van Etten, who has a PhD and is certified as a BCBA and LBA, notes that some autism therapy providers do hire diagnosticians. However, diagnostics are both time-intensive and are reimbursed at a concerningly low rate. About 30% of clinicians who responded to the CMS equity conference survey cite low reimbursements as a barrier to diagnostics. Out-of-pocket, formal and authoritative autism assessments can cost hundreds of dollars. About half of Americans would struggle to pay an unexpected medical bill, while 41% of Americans are already in debt to a health care provider, according to a KFF report.

Van Etten notes that diagnostics and treatment “require that humans, that clinicians” engage at multiple levels with the family. Each level presents a chance for delay. And even once a child gets a spot at a treatment provider, the development of a personalized treatment plan may take several more weeks, depending on the caseload and responsibilities of the BCBA. Once that happens, perhaps concurrently with that, a provider has to assign the child to an RBT.

This is difficult for all providers, especially smaller organizations with more fixed caseload parameters or growing organizations seeking to align onboarding of both patients and providers.

“Making that perfect symmetry of getting intake done and staff trained is really difficult for the business as well as the family,” Van Etten said.

During the interim, providers turn to training and educational content to help where possible before services can start. On top of educational resources to help parents build skills, educational resources can help ensure that parents and guardians set correct expectations about services and build buy-in on the part of parents, Van Etten said.

Establishing buy-in is one way that autism therapy providers can ensure better care outcomes as well as reduce operational challenges such as appointment no-shows. However, this presents another challenge. Good care that drives retention definitionally means that spots for new patients don’t come open unless a care provider is expanding its capacity. And what spots do come open in some cases can be few and far between.

Scott Lepley, chief director at Family Solutions-Behavioral Developmental Services, told BHB that patient engagements on the low end last several months to a few years, typically for younger early-intervention patients. Other treatment engagements last years. But that all widely varies by each child. Early interventions often target patients joining general population classrooms. Either way, compulsory school attendance creates a natural stopping point by which a patient might end care with his organization and engage with school resources.

What turnover Lepley has seen in his career has mostly been attributed to patients reaching the point where they’ve gotten all they can out of therapy. Still, there are a variety of reasons for patient discharge, including discharges for non-attendance.

Family Solutions-Behavioral Developmental Services is based in Louisiana. It operates six centers across the state. The newest opened its doors in November and its clinical slots are already full. It already has a roughly forty-person waitlist.

Lepley said Family Solutions is taking a measured approach to growing the clinic. It presently employs one BCBA and four technicians. The plan is to double the present output of about 150 billed hours. At the time of the interview, Lepley was about to bring on two more technicians.

Finding technicians is the top constraint for wait times, according to Lepley. He has known BCBAs that provided direct services for years because of their concern and focus on providing the highest quality care possible. But that approach whittles the waitlist one kid at a time.

“When you look at how to really combat that, and then on the flip side of things, how to really actually scale clinics, you need line techs,” Lepleay said. “[Hiring line techs] is difficult for a variety of reasons. It’s difficult to find a candidate that you actually want to be a line tech.”

Lepley said that low reimbursement rates, which are especially low for providers seeking to care for Medicaid patients, lead to wages that aren’t attractive to the most desirable candidates. He maintained that his base wage for technicians of $15 an hour is competitive relative to others in his clinics’ markets.

“Taken altogether, it’s not a very attractive job. We’re expecting you to get punched, spit on, scratched, kicked, have chairs thrown at you, deal with every bodily fluid under the sun, deal with ear-piercing tantrums, and you’re doing it for $15 an hour,” Lepley said. “On the other side of that scale, what we’re hiring for is somebody who can execute and dispense a highly complex, very systematic behavioral therapy plan to a ‘t’ that a master’s-level behavior analyst has written. And you have got to run this session with somebody who is screaming, who is hitting you and you have to collect accurate data … that’s a highly complex job and we’re [paying] $15 an hour to do this really complex job — those two things do not match.”