What is the "Right to Effective Treatment"?
An in-depth analysis of the purpose of The International Association for the Right to Effective Treatment (IARET) and it's position on aversive treatments
"When I use a word," Humpty Dumpty said, in rather a scornful tone,
"it means just what I choose it to mean -- neither more nor less."
"The question is," said Alice, "whether you can make words mean so many different things."
"The question is," said Humpty Dumpty, "which is to be master -- that's all."
-- Lewis Carroll, Through the Looking Glass
A dangerous pothole becomes a "paving deficiency." A death by medical malpractice is described as a "diagnostic misadventure of a high magnitude." A squadron of Air Force bombers never kills anyone; rather, it innocuously "services the target." Welcome to the sanitized modern world of euphemisms, in which unpleasantness and moral responsibility can be avoided simply by avoiding clarity.
Perhaps nowhere has the development of euphemisms reached such astounding proportions as in the field of human services, where Exhibit A is an advocacy organization which calls itself The International Association for the Right to Effective Treatment (IARET). From the name alone, you might mistake this for an advocacy group devoted to health care reform or universal insurance coverage. "Effective treatment" sounds as down-home innocent as "Mom and apple pie," but unless your home comes equipped with electroshock devices, locked seclusion rooms, and all the necessities for a variety of painful and degrading aversive procedures, it's time to take a closer look at the IARET's closely guarded agenda.
IARET was founded in the late 1980s with a nine-goal vision that can best be described as opaque. Goal One is "To educate human service providers, parents, public officials, legislators and other citizens about effective treatment, means for achieving it, and legal, ethical and moral considerations which necessitate its implementation." Non-IARET readers may be baffled at the notion that "effective treatment" is such a knotty and complex concept that an international organization is required to convince them of its "legal, ethical, and moral" desirability. This bafflement is a good indicator of the proximity of major euphemisms.
IARET's Goal Two, as specific a definition of "effective treatment" as the reader will receive, is clearly the work of a master prose stylist: "To promote public knowledge, understanding, and acceptance of treatment procedures that are based upon the empirically verifiable behavior principles and which are themselves empirically verifiable." Consulting a dictionary, readers can discover that an "empirically verifiable" principle is one which can be shown to work, in whatever way, by whatever means, and for whatever ends. If they wish IARET to identify in its goals statement the "behavior principles" it has empirically verified, they are out of luck. Presumably every school child can recite them by heart. However, if readers of these goals were absent when the "behavior principles" were taught, they may decide to turn to the IARET Newsletter for enlightenment.
Here again, IARET's agenda is hardly shouted from the rooftops. There are no editorials. Reprints from other newsletters and brief reviews of books and articles are printed with disclaimers that they "do not necessarily represent official positions of IARET, Inc." Feature articles, reprinted from a variety of sources, follow a pattern of championing, without defining, "behavior technology."
IARET's feature article for Spring 1994, a reprint of Bernard Rimland's recent essay "Non-aversive Treatments -- Progress But No Breakthroughs" (Autism Research Review International, Vol. 8, No.1) is slightly more informative. Rimland contends that aversive procedures such as "mild electric shock" are needed for controlling difficult behavior in programs and classrooms, basing his contention in part on a supposed admission by anti-aversive proponents Anne Donnellan and Gary LaVigna that "(aversives) may be required after at least three attempts to use non-aversives have failed." Unfortunately for IARET readers, this newsletter is not particularly sensitive to the veracity of its sources. Protests Donnellan, "We never have made or written such a statement. Dr. Rimland has been warned publicly and privately that to continue to use our names and our professional reputations to support positions that he espouses and we oppose exposes him to charges of unethical, illegal, as well as ridiculous conduct."
Rimland's flawed article does appear to take the reader closer to a glimpse of the IARET's agenda, yet it is held at arm's length by an editorial policy which declares that such reprints "do not necessarily represent official positions."
Officially, what does the IARET ask of its members? Virtually every newsletter contains "Action Alerts" concerning legislative and regulatory attempts to "restrict an individual's right to effective treatment," instructions to members about how to protest, and requests that members monitor their home states and report to IARET any signs of legislative or regulatory trouble. The specific legislation and regulations which IARET is targeting are repeatedly identified as "anti-choice" provisions which "ban" or even simply "restrict" the "use of aversive procedures."
Aversives, although never defined in the IARET Action Alerts, comprise painful and humiliating physical punishments which most people would report to the police if they were applied to grandmother by the nursing home staff, or even by the neighbor to his pet dog. Pennsylvania's Office of Mental Retardation, for example, defines aversives as "the application, contingent upon the exhibition of maladaptive behavior, of startling, painful, or noxious stimuli." Common examples are ammonia squirts to the face, foul substances sprayed in the nostrils, spanking, hair pulls, cold baths, white noise helmets, and electric shocks.
Aversives are a sub-category of practices technically known as "restrictive procedures." A restrictive procedure has been defined as "a practice that limits an individual's movement, ability or function; interferes with an individual's ability to engage in positive reinforcement; results in the loss of objects or activities that an individual values; or requires an individual to engage in a behavior that the individual would not engage in given freedom of choice" (Pennsylvania Bulletin, Vol. 21, No. 32, 8/10/91). Examples of restrictive procedures would be secluding an individual with disabilities in a locked room, food deprivation, deprivation of mobility, and blindfolding, manacling or waist-chaining the individual in an attempt to control behavior.
In common parlance the term "aversives" is often used to denote many restrictive procedures as well. Legislative and regulatory proscriptions against aversive and restrictive approaches are designed to set a professional standard for educators and service providers, ensuring against the ongoing use of punishment as an acceptable principle of behavior management.
Lobbying to protect the "right" of individuals with disabilities to experience aversive and restrictive procedures appears as the core activity of the IARET. Its members do an exemplary job of complying with IARET's Goal Four: "To consult with regulatory and licensing agencies concerning regulations designed to govern the delivery of behavioral treatment or educational services." Around the nation, in situations where the possibility of a ban or a limitation on the use of aversive or restrictive procedures seems imminent, IARET has taken an active part in demanding that this basic "right" be preserved.
In 1991, when Pennsylvania's Office of Mental Retardation published new rules and regulations for Community Living Homes and Family Living Homes which greatly limited the use of restrictive procedures and totally banned aversive conditioning, 66% of the 68 letters received thoroughly supported this ban. Weighing in against OMR's new safeguards were strong letters of objection from the IARET.
When Maryland's Administration for Developmental Disabilities proposed similar rules in 1991, the IARET again championed the right of people with disabilities to be treated aversively. Positive approaches advocate Nancy Weiss reports, "Maryland providers were generally in favor of the anti-aversive regulations, while the vast majority of objections received by the Department were from out-of-state and were organized by the IARET." In both of these states the proposed regulations were passed, but other states have experienced defeat.
In 1991 IARET member Matthew Israel, who founded and directs the Behavior Research Institute's operations in Massachusetts and Rhode Island, felt that IARET's advocacy efforts could be enhanced. In a 3-page letter, he suggested that members put a pre-composed letter on file: "We could then individually address the letters to each addressee, personalize each letter for the number of the bill or regulation in question, and then send the letters back to you for your review, signature, and mailing." Israel promised that BRI staff would donate, in their spare time, secretarial and organizational skills.
Coincidentally, Israel's letter also reminded IARET members to write against an anti-aversives bill pending in Massachusetts. The bill did not pass, and Israel's Behavior Research Institute continued to treat students with disabilities with manacles, 4-point restraints, weeks and months of isolation, and up to 200 electroshocks a day via a powerful, unprecedented remote-control device, the Graduated Electronic Decelerator (GED), which is worn 24 hours a day, every day, and which has been reported to cause burns on the skin of about a third of the students against whom it is used.
IARET's other avowed interest is the "efficacy" issue alluded to in the organization's name. Goal Six is "To assist in designing systems to monitor the efficacy of treatment procedures," Goal Seven is "To promote training and licensing or certification of competent behavior analysts and behavior therapists," and Goal Eight is "To promote basic and applied research related to the most effective treatments, and to further our understanding of human behavior."
If the IARET were serious about investigating efficacy rather than simply making a case for aversives, the organization would truly have its work cut out. According to The Coalition for the Legal Rights of Persons with Disabilities, despite the insistence that aversives are "therapies," to the best of their knowledge neither IARET advocate Israel nor his school "has ever submitted data on the success of any of these therapies -- none -- to any journal for peer review." (A Short History of BRI and Its Use of Aversives, Northampton, MA, 1994).
While other practitioners of aversive conditioning have published, peer reviewers have found their methods to be irresponsible and their data unconvincing. In a review of 403 published studies (in 318 articles) of the treatment of individuals with developmental disabilities, researchers Joseph Scotti, Ian Evans, Luanna Meyer, and Pamela Walker concluded that, while a considerable data base is believed to exist concerning the efficacy of behavioral procedures, and while specific presumptions about the rapidity and efficacy of aversive treatments form part of that belief system, in fact the published literature does little to justify this faith. "Overall," their review concluded, "the standards of practice revealed by the published literature can only be described as highly disillusioning." ("A Meta-Analysis of Intervention Research with Problem Behavior: Treatment Validity and Standards of Practice," American Journal on Mental Retardation, Vol. 96, No. 3, Nov. 1991).
Anne Donnellan and Gary LaVigna do a cogent job of unravelling this bizarre belief system in "Myths About Punishment," (in A.C. Repp and N.N. Singh, Current Perspectives in the Use of Nonaversive and Aversive Interventions for Persons with Developmental Disabilities. Sycamore, IL: Sycamore Press, 1990), in which they argue that punishment is neither "necessary," nor "more effective" nor "easier" than positive and humane alternatives.
Although the IARET Statement of Philosophy insists that "Cosmetic attractiveness is not an acceptable substitute for demonstrable clinical effectiveness," its publications evidence little interest in investigating fundamental criticisms of the supposed efficacy of aversives; rather, the IARET approach is simply one of advocacy for universal approval of aversive treatments. Ironically, cosmetic attractiveness of the IARET goals and publications does indeed seem to be an acceptable substitute for describing the true nature of electroshocks, ammonia sprays, isolation rooms, white noise helmets, restraints, and a vast array of other punishments and tortures used to "treat" people with disabilities.
The IARET Board of Directors consists of nine members. President Ron Van Houten of the Behavior Analysis Family Center in Nova Scotia, Canada, is the only director from outside the U.S.A. Secretary Wayne Robb of Waltham, Mass. is joined by fellow-Massachusetts citizens Jayne J. Enos, IARET Treasurer; Roderick McLeish, current attorney for Matthew Israel's Behavior Research Institute (BRI); and Robert A. Sherman, who identifies himself as Assistant Attorney General for Massachusetts and is also a former attorney for the Behavior Research Institute. Also on the Board are Thomas Linscheid of the Children's Hospital Department of Pediatrics in Columbus, Ohio, and Don E. Williams of the Richmond State School Department of Psychology in Richmond, Texas, who jointly helped to refine the SIBIS electroshock helmet and published the first paper on the use of this technology as a behavioral "treatment."
The Autism Society of America (ASA) is represented on the IARET Board by current ASA President Jacquelyn H. Rosen of Lantana, Florida, and by Peter Gerhardt of Eden Services in New Jersey, a current ASA Board Member who also edits the IARET Newsletter. (NOTE: This was the composition of the IARET Board in 1995, when this article was written.)
The IARET address is 763 Main St., #10, Waltham, MA 02154-0604.