Autism therapy providers are under pressure to demonstrate outcomes.
Payers, whether commercial insurers or Medicaid, demand data-driven results. And the parents or caregivers of children diagnosed with autism spectrum disorder (ASD) also want information on how their child is progressing, and what services are provided, in addition to Applied Behavior Analysis (ABA), might be needed.
But ABA-focused autism therapy is still a fairly green sector, and there are no agreed-upon strategies to measure care.
“Our industry is still evolving,” Nicole Kanew, vice president of clinical operations at JoyBridge Kids, told Autism Business News. “We are still trying to create best practices and best procedures.”
ABN spoke with clinicians at four ABA providers regarding the tools they use to diagnose a patient’s progress, and how those measurements get presented to payers, parents and the patients themselves.
JoyBridge Kids
JoyBridge Kids started in 2020 in Mount Juliet, a suburb of Nashville, and it has grown to operate autism therapy clinics in Georgia, North Carolina, and Tennessee.
JoyBridge Kids collects data on specific targets the child should aim for, Kanew said. The targets typically align with assessments administered using the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) and the Assessment of Basic Language and Learning Skills (ABLLS-R).
The VB-MAPP is based on 170 developmental milestones, such as a child’s ability to verbally request what they want. ABLSS-R tracks 25 skills, looking at everything from syntax and grammar to dressing and grooming.
What skills to focus on have changed over time, with less focus on the child being compliant to orders, or ironing out personality traits such as frequent hand-clapping.
“There used to be a heavy evidence on reducing behaviors associated with autism,” Kanew said.
Data indicating a child’s development is then entered into electronic medical records. JoyBridge has a contract with CentralReach, a Fort Lauderdale, Florida-based behavioral health software company, to manage its records.
The challenge, Kanew said, “is the ability to aggregate the data across the different assessments” and then use it to adjust a child’s care plan, including scaling down, or titrating, their clinical hours.
“It is an educational process for behavior analysts,” Kanew said. “There is not really an industry standard for how to titrate services.”
Meanwhile, JoyBridge works with health insurance companies who bring their own measurements to the table.
In the past year, “payers are starting to ask on the front-end, how long [the child] will be in services, based on the intake assessment,” Kanew said, adding that insurers also seek a projected date of mastery for dozens of behavioral targets.
“We talk to parents about the realities of insurance payers,” Kanew said. “Also, with parents, we are trying to get them heavily involved.”
This includes requesting parents call the insurers themselves to say continued therapy is a medical necessity.
Behavioral Framework
Behavioral Framework is a Rockville, Maryland-based company founded in 2017 that provides home-based care to children diagnosed with ASD in Maryland, Virginia and Washington D.C. They also have brick-and-mortar clinics in North Carolina.
Each parent whose child starts care with Behavioral Framework receives a curriculum-based assessment such as ABLLS. Parents also fill out a questionnaire to measure their stress, Brittany Rader, Behavioral Framework’s president of clinical services told ABN.
Once a child starts their ABA program, Behavioral Framework tracks the development of skills using curriculum guides like ABLLS, Rader said.
In providing skills acquisition updates for insurers, Behavioral Framework uses questionnaires like the Vineland Adaptive Behavior Scales when required. The venerable assessment tool rates behaviors children are able to complete without prompting, on a scale of “always,” “sometimes” and “never.”
But Behavioral Framework clinicians can use less traditional tools with parents and caregivers.
“For example,” Rader said. “Instead of showing behavior reduction graphs, we present a pie chart with aggregate data that simplifies things down to how much time their child is cooperating during therapy sessions.”
Caregiver feedback is always incorporated, Rader said, and it is formalized during “each reassessment period which typically occurs every six months.”
One challenge is getting feedback from the patients themselves.
Older children participate in their goal selection process, and may complete assessments like the Social Responsiveness Scale, a 65-question survey that asks about social awareness and communication, Rader said.
Clinicians take a different approach for younger children.
“For instance, the patient may be included when filling out a daily report by allowing them to circle from faces with varying emotions to demonstrate how they felt or did during that session,” Rader said.
Verbal Beginnings
Verbal Beginnings is a Columbia, Maryland-based company founded in 2011 with autism therapy services in Delaware, Maryland, Pennsylvania, Virginia and Washington, D.C.
Emily Stampone, Verbal Beginnings’ director of clinical operations, told ABN that assessments, including the Vineland Adaptive Behavioral Scale, “are valuable tools that allow a clinician to assess their client’s individual behavior compared to their peers.”
Verbal Beginnings’ clinicians also collect data on how carefully a patient’s progress is tracked.
“This includes procedural integrity data to ensure that interventions are implemented correctly and interobserver agreement data to observe the accuracy of data collection,” Stampone said.
Verbal Beginnings also culls qualitative data on patient visits. According to Stampone, these observations are helpful when giving parents and caregivers progress reports.
It is important to “empower caregivers to contribute to treatment decisions when appropriate,” Stampone said.
As for insurers, Stampone said Verbal Beginnings must demonstrate accomplishments in the hours billed by mapping out how symptoms related to ASD are reduced.
“With an insurer, the focus should be on providing data to demonstrate why services are medically necessary,” Stampone said.
Axis Therapy
Ankeny, Iowa-headquartered Axis Therapy Centers has four clinics. Its biggest payer is Medicaid, which supplies the company with about 60% of its revenue, according to Kristin Hanson, Axis’s CEO, co-founder and clinical director. The company started in 2017.
Axis uses the Vineland Adaptive Behavior Scales to measure a patient’s progress over time as well as the Pervasive Developmental Disorder Behavior Inventory, in which clinicians and parents each fill out a form regarding a child’s social, language, learning and memory skills, Hanson said.
The tests provide a glimpse of a patient’s progress over time, Hanson said. They are also used to communicate the necessity of services to payers.
“Insurers want to see outcomes based on widely accepted, evidence-based tools that provide quantifiable data,” Hanson said.
However, quantitative data “represents just part of the picture,” Hanson said. “Other factors such as family dynamics, environmental changes, and individual subjective experiences also play a role in overall outcomes.”
Through clinical observation and interviews with family members and teachers, Axis produces qualitative data that “offers insights into the quality and context of those behaviors or skills, helping to explain why certain changes may have occurred.”
This data is primarily communicated to the parent.
“Reporting to a parent emphasizes personalized, qualitative information about their child’s progress, emotional development, and overall well-being in a way that is accessible and supportive,” Hanson said.
