Expert says autism therapy data flawed

The cover of a technical report written by Dr. Ira L. Cohen on “flawed” data provided to Congress by the Department of Defense regarding Applied Behavior Analysis therapy for children with autism. The DOD data is included in several required congressional reports from 2018 through 2019, and represent an apparent attempt to save the department money, according to the National Coalition for Access to Autism Services.

Autism therapy insurance coverage has long been a concern for American service providers and families, particularly military families with autistic children. This year is no different.

The National Coalition for Access to Autism Services has launched an Autism Services for Kids campaign in response to three years of “flawed” and misleading Department of Defense data collection and reporting to Congress on Applied Behavior Analysis.

ABA — considered an “evidence-based” best practice treatment by the American Psychological Association — is one therapy option with varying models for children with Autism Spectrum Disorder and widely used by behavioral health care providers internationally.

Health insurance for military members and their families falls under the DOD through TRICARE, and for autism, plans cover occupational therapy, physical therapy, physician services, psychological services, psychological testing, prescription drugs and speech therapy.

For ABA specifically, coverage is separately offered through TRICARE’s Comprehensive Autism Care Demonstration. Used by several federal departments, demonstrations are designed to gauge the effectiveness and direction of a program.

According to an analysis prepared by Dr. Ira L. Cohen and published earlier this year, DOD reports have been “substantively flawed and based on the incompetent interpretation and analysis of the collected data,” leading to results that suggest military children with autism were not making behavioral progress with ABA.

“What we’ve clearly seen since 2018, is that TRICARE, if you take these reports together, is building a case against ABA services,” NCAAS spokesperson David A. Fuscus said in a February interview, adding that the case is an apparent attempt to save the department money. “At the same time, the costs for ABA services have gone up dramatically.”

With rising health care prices across nearly all sectors, the DOD has calculated ABA program costs have increased by 65% over four years, to $370.4 million in 2019.

An NCAAS petition, with 2,657 signatures at the time of this report, calls for TRICARE to stop “bending science to cut costs at the expense of military children with autism.”

TRICARE’s Autism Care Demonstration began in July 2014, and has since been extended through Dec. 31, 2023. As the demonstration’s administrator, the DOD’s Defense Health Agency is required to regularly report to Congress about program progress and feedback from families.

As with other behavioral health evaluations, a testing instrument with an accompanying scoring manual is typically used to measure progress of children receiving ABA therapy, which took off in the 1960s and ’70s, relying on principles of conditioning and positive reinforcement to change behavioral responses over time. Some ABA therapy goals, for example, target minimizing self-injury.

The DOD uses a Pervasive Developmental Disorder Behavior Inventory, or PDD Behavior Inventory, to score and analyze progress empirically.

Dr. Cohen, an autism and behavioral assessment specialist, wrote the instrument himself.

In Dr. Cohen’s reading of six DOD congressional reports, he noticed the elimination of thousands of responses from “informants,” most often parents who share behavioral observations.

The fourth 2018 quarterly report alone describes the discarding of 90% of patient assessments, dropping the test sample from 14,700 to 1,577 children from which conclusions were drawn. The data discard, Dr. Cohen wrote, stems from “the incorrect assumption” that scores of zero mean the item was “missing.”

“Instead, it means that the behavior was not seen,” Dr. Cohen’s 30-page technical analysis reads.

Referring to the June 2019 annual report to the House and Senate Armed Services Committees, he wrote: “It is clear that the Department of Defense authors have not bothered to read the manual.”

In an interview with the Times, Dr. Cohen said the lack of study controls and scientific integrity in the data interpretation lends the conclusions to be unjustifiable, likening the reporting process to “garbage in, garbage out.”

“Faulty input equals faulty output, or, in this case, faulty data equals faulty and unsustainable conclusions,” he wrote in his analysis.

The NCAAS met with Pentagon officials last year to discuss the DOD’s reports, a meeting Mr. Fuscus described as “completely unproductive.” Following that Feb. 6, 2020, meeting, additional DOD reports were published with the same study flaws, he said.

Changes to the demonstration program were approved last month, and will begin to take effect May 1, rolling out completely by Jan. 1. Most of the changes are procedural or billing-based, though covered ABA assessment and treatment plan development requirements remain largely untouched. One adjustment allows continued telehealth coverage beyond the COVID-19 pandemic.

Karoline Leavitt, communications director for Rep. Elise M. Stefanik, R-Schuylerville, said the congresswoman will review Dr. Cohen’s report and follow up with the DOD “to ensure military families have the resources they need and deserve.”

“As the chief advocate for Fort Drum and as a member of the House Armed Services Committee, Congresswoman Stefanik has a strong record of providing significant health care resources and funding for the north country’s military families,” Ms. Leavitt wrote in an emailed statement.

Infinity emblems, puzzle pieces, red and blue ribbons — however an autistic person chooses to celebrate neurodiversity — are flying now, mid-way through Autism Acceptance Month.

Longstanding controversy surrounds historical use of ABA therapy, though ABA “has become more of a touchstone — an approach based on breaking down a skill and reinforcing through reward, that is applied more flexibly,” according to a 2016 deep dive from Spectrum News, an independent publication of the Simons Foundation Autism Research Initiative. Whether an ABA model is the best therapy option, according to Spectrum, depends on the child.

For its part, the NCAAS is about access to services.

“Our providers out there are starting to hear, anecdotally, that insurance companies outside the military, outside TRICARE, are now looking at TRICARE’s work, their research on this and their reports to Congress, and a real fear is that this anti-ABA sentiment based on ‘cooked books’ is going to spread out into the general insurance population,” Mr. Fuscus said. “And that hurts even more kids.”

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