The Defense Department’s conclusion that military children with autism were not making progress with a key treatment has substantial flaws and is based on “incompetent” interpretation of the data, according to a new report.
The report, written by leading autism researcher Ira Cohen, is critical of DoD’s conclusions about the lack of progress of children who are diagnosed with autism and are receiving Applied Behavior Analysis therapy, or ABA, through DoD’s Autism Care Demonstration project. The demonstration project offers ABA services for all Tricare-eligible beneficiaries with Autism Spectrum Disorder diagnosed by an approved provider.
One advocacy group is going so far as to say DoD has “manipulated data” and is “systematically building a false case to Congress,” with the apparent goal of cutting funding for the ABA treatment.
“DoD has been playing fast and loose with science to discredit a highly effective autism therapy and, apparently, substitute a cheaper and less effective treatment,” said David Fuscus, spokesman for the National Coalition for Access to Autism Services. Cohen conducted the analysis of DoD’s conclusions for that coalition, reviewing six DoD reports to Congress from 2018 to 2020. DoD officials are required to submit quarterly and annual reports to the House and Senate armed services committees on DoD’s ABA treatment program.
According to DoD’s most recent report, costs for the ABA treatment in the demonstration project were $370 million in fiscal 2019. The average cost for the time-consuming, intensive treatment was $23,253 in 2019. Costs vary depending on the frequency of treatment and a variety of other factors. There are 15,982 military children diagnosed with autism involved in that project.
Defense Health Agency officials didn’t immediately respond to requests for comment about the criticism.
The demonstration project started July 25, 2014 and is scheduled to end Dec. 31, 2023.
The children in this project rely on the demonstration project as an integral intervention, “and our families deserve to maintain their access to this evidence-based therapy as an industry standard,” said Wendy Kruse, president of Military Special Needs Network, a member of the newly formed EFMP Coalition.
DoD is in the process of a comprehensive review and is rewriting the Autism Care Demonstration project, and advocates are concerned about what that DoD review will mean for the future of ABA therapy. “We are very concerned with what these significant changes will be, as the 2020 annual report, along with previous DoD reports, have suggested that there was a lack of effectiveness” of the demonstration outcomes, Kruse said.
Advocates are concerned about DoD possibly removing ABA therapies for military children with autism who are the DoD Exceptional Family Member Program, or EFMP, the EFMP Coalition said in a statement to Military Times. Coalition members include Partners in Promise, Exceptional Families of the Military, Military Kids — Special Education Alliance, Military Special Needs Network and Modern Military Association of America. The coalition is also concerned that LGBTQ children with an autism diagnosis won’t receive the needed support, understanding and practices to ensure their mental well-being.
Advocates want DoD to expand the health care coverage of ABA services. According to the Centers for Disease Control and Prevention, ABA has become widely accepted among healthcare professionals and is used in many schools and treatment clinics. The treatment encourages positive behaviors and discourages negative behaviors to improve a variety of skills.
Participation in DoD’s Autism Care Demonstration project increased 39 percent, from 11,461 beneficiaries in fiscal 2015 to 15,928 beneficiaries in fiscal 2019, according to DoD.
In their 2020 annual report to Congress DoD stated that their findings “demonstrate that the current format of the [autism demonstration project], and the delivery of ABA services, is not working for most Tricare beneficiaries” in the project.
“It is imperative that [Defense Health Agency] take a deeper look into why Tricare beneficiaries are not seeing more improvement over time,” the DoD report stated.
But DoD’s conclusions can’t be justified, because of “profoundly serious limitations” with the way DoD used the assessment tool, stated the creator of that tool, Ira L. Cohen, in the recent report scrutinizing DoD’s evaluations of the effectiveness of ABA for military children. Cohen created that assessment tool, called the Pervasive Developmental Disorder Behavior Inventory, or PDDBI, which is used worldwide by practitioners to evaluate children with autism, as well as their treatments such as ABA.
“Most glaring is the total lack of understanding as to how the PDDBI is scored and interpreted and the obvious failure to read the manual,” Cohen concluded. For example, he noted that most of the original cases in the demonstration project were eliminated from the evaluation because of an incorrection assumption that a score of “0” meant that an item was missing. “Instead, it means that the behavior was not seen!” Cohen wrote.
“The conclusions one draws from an analysis are only as good as the quality of the information that goes into the analysis. If the data are sloppy, so are the conclusions and their validity, a [garbage in, garbage out] problem.”
Advocates for military children with special needs are concerned about what DoD’s conclusions about ABA therapy could mean, as officials are conducting a comprehensive rewrite of the Autism Care Demonstration.
“Data is vital to making decisions, but it must be good data. Dr. Cohen wrote the book on how to assess ABA progress monitoring. If he is concerned about the validity of this data, we all should pause and reevaluate,” the EFMP Coalition stated.
“We strongly encourage the DoD to look to industry standards, which support maintaining ABA coverage.
“For our families ABA is an integral intervention in the treatment of autism which should be fully funded in the same manner as augmentative and assistive communication devices, as well as speech and occupation therapies. Funding concerns are legitimate, and ABA therapies are expensive, but the cost of not supporting our families’ health is a loss of military readiness, which has a high price tag,” the EFMP Coalition stated.
DoD’s costs for the autism demonstration project have increased 129 percent since its inception: from $161.5 million in fiscal 2015 to $370.4 million in fiscal 2019, according to DoD’s report.
The average cost per participant has increased by 65 percent from fiscal 2015 to fiscal 2019, according to DoD’s report. Average cost for an active duty family member patient in the demonstration project increased by 66 percent, from $14,393 in fiscal 2015 to $23,886 in fiscal 2019.
DoD officials stated that the ongoing review “will evolve the program to a more beneficiary- and family-centric model. These changes aim to not only improve the quality of, value, and access to care and services for beneficiaries diagnosed with [Autism Spectrum Disorder] and their families, but also to improve management and accountability….”
The demonstration has been mostly focused on the implementation of ABA services, DoD officials stated, but since it’s a comprehensive demonstration, the Defense Health Agency “is directing efforts toward incorporating all available medically or psychologically necessary and appropriate services for children diagnosed with [autism] and supporting the family.”
As of now, ABA services do not meet the TRICARE hierarchy of evidence standard for medical and proven care, DoD officials stated. While advocates want DoD to expand coverage of ABA services, those coverage expansions aren’t discretionary, officials said. “Tricare Basic Program benefit coverage determinations must be based solely on the hierarch of ‘reliable evidence’ defined in federal regulation,” they stated.