The U.S. Department of Defense continues to misinterpret an internationally accepted autism assessment tool to justify the possible termination of a crucial program to treat the children of military families who have been diagnosed with autism spectrum disorder, even after the department was directly advised by the assessment tool’s creator about the Pentagon’s fundamental errors and thus unsupportable conclusions.
Among U.S. military families, the Defense Department estimates that 34,000 children have autism and about half of them are treated with applied behavior analysis therapy. ABA is a therapy based on how behaviors work in real situations and seeks to decrease harmful behaviors and increase helpful ones. Autism Speaks says, “ABA is considered an evidence-based ‘best’ practice treatment by the U.S. Surgeon General and by the American Psychological Association. ‘Evidence based’ means that ABA has passed scientific tests of its usefulness, quality, and effectiveness.”
TRICARE, the Defense Department health insurer, is putting medical coverage of ABA at risk for 17,000 children of military families receiving the treatment. Since 2019, the Defense Department has been transmitting required quarterly and annual reports to Congress on its Autism Care Demonstration, which draw conclusions about ABA’s effectiveness based on a renowned autism assessment tool that the tool’s creator says has been improperly utilized.
The tool — called the PDD Behavior Inventory or PDDBI — is used to measure response to treatment and was created by Dr. Ira Cohen, who is also the author of more than 100 peer-reviewed and scientific papers about autism. The Defense Department analysis of the effectiveness of ABA began with a survey of the PDDBI assessments of 14,700 military children receiving ABA. The department then incomprehensively discarded 90 percent of these PDDBI assessments and instead drew conclusions from the assessments of just 1,577 children. A significant error in determining how the tool is scored resulted in a highly biased sample of children.
Cohen reviewed six of the Defense Department reports provided to Congress dating back to 2019. Beyond the obvious statistical issue created by relying on just 10 percent of the sample, Cohen concluded that “the persons responsible for scoring the tests didn’t read the instruction manual which, based on TRICARE’s analysis, made the results meaningless.”
Cohen’s detailed written analysis of the Defense Department reports is publicly available and can be found at www.SaveAutismServices.org.
In addition to this more recent analysis, Cohen, along with myself and other clinicians, met with senior Defense Department health care officials in February 2020 to express his alarm about the Pentagon’s incorrect use and inappropriate application of his assessment tool and, therefore, the wholly unsupportable conclusions in the Defense Department reports to Congress about the effectiveness of ABA. However, subsequent to this meeting, Defense Department reports to Congress dated June 12 and June 25, 2020, respectively, demonstrated that the Defense Department simply ignored and continues to ignore Cohen’s critical guidance about the correct use of his assessment tool.
Unfortunately, it seems that the Defense Department’s ABA analysis is all about the money; it’s not about identifying effective treatment for children with autism. Although the two different statutes that direct the Defense Department to submit its annual and quarterly reports to Congress say nothing about addressing the cost of the program, the Defense Department has decided – on its own – to make costs a key metric in its evaluation of the program. In its most recent report to Congress, the Pentagon states that program costs rose by 65 percent over four years to $370.4 million.
A portion of the cost increase is more likely attributable to a growing number of children in the program, not increasing reimbursement rates, which have only seen marginal increases and the greatest increases in higher-cost urban locations where few military facilities and families are located. Moreover, the reality is that extensive scientific research shows that working with children with autism is time-intensive for parents, for educators and for treatment providers. The scientific literature on ABA states that the more intensive the treatment, especially in younger children, the more effective the result. Unfortunately, there is no quick therapy for autism – it takes work to get results.
Regrettably, while appearing to rely on science to justify questioning the cost and therapeutic effectiveness of ABA, the reality is that the Defense Department is misinterpreting that science.
Military families face so many challenges in serving our country, so why are we adding one more especially complex challenge? The losers in this process are going to be 17,000 children of military families with autism.
Dr. Hanna C. Rue is a clinical psychologist and a board-certified behavior analyst who serves as the chief clinical officer for LEARN, where she oversees quality assurance, training, data systems, professional development and clinical research across the Autism Division.
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