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by Matthew Israel, Ph.D. {The following is an op ed article that I submitted to the New York Times in early November, 1999. It was rejected.} The obituary of J.V. (Friday, October 29, 1999 NYTimes) fails to identify his real killer—the ideology of nonaversive treatment, currently known as Positive Behavior Support. J.V. was a student for several years at the Judge Rotenberg Educational Center (JRC), a Massachusetts residential school which I direct. Prior to enrolling in JRC in 1991 at age 17, J.V. had a life-long history of severe self-abuse, including gouging his skin and open wounds to the point of bone infections, breaking his own arms, pulling out his own teeth and tearing off his fingernails. Prior to JRC, J.V. had received little or no education and had been living, since 7, in a succession of hospitals and institutions. He was also confined to a wheelchair because of a deep hole he had gouged in his heel that was infected and resistant to medical treatment. Over the years J.V. had been subjected to numerous, but ineffective, psychotropic drugs that left him morose and lethargic. He was also subjected to numerous programs that featured only positive-only programming but which were unable to stop his self-abusive scratching. One of these was the Kennedy Krieger program in Baltimore which J.V. was enrolled in immediately prior to coming to JRC. After J.V. enrolled in JRC, the school made its usual attempts to help him using a powerful combination of positive rewards and educative procedures—procedures that are effective with 50% of JRC’s student population. Unfortunately, in J.V. case, positive programming was not sufficiently effective by itself. With his parents’ consent, JRC applied to a probate court for authorization to provide J.V. with a behavior modification treatment program that included aversives. A judge found J.V. incompetent, by reason of mental illness, to make his own medical decisions. The judge also approved a treatment program that involved frequent earned rewards (restaurants, movies, mall visits, CDs, tapes, stereo equipment, opportunities to be a DJ, etc.) and supplementary aversives in the form of an immediate, brief (two seconds) skin-shock in response to each instance of self-abuse. This was the first effective, sustained treatment that J.V. received in his lifetime. It diminished his scratching and gouging to near-zero levels, enabled his wounds to heal, and allowed him to receive needed skin grafts. Soon, J.V. was weaned off psychotropic medication, walking again, living in a JRC community-based group home and pleased to be attending Attleboro High School. J.V. was happy, healthy and proud to be improving himself. In 1994, advocates who opposed JRC persuaded J.V.'s parents to transfer him, against my recommendation, to Job Path in New York, a program based on the ideology of Positive Behavior Support. According to this approach, persons with mental illness or developmentally disabilities should never receive aversive therapy and should be treated as if they are entirely normal. They should be free to make their own choices and do more or less whatever they want. Advocates of this approach consider JRC’s use of behavior modification to treat and educate disabled people with behavior disorders to be inhumane, undignified and hurtful to a person’s self-esteem. The Positive Behavior Support philosophy required that J.V. have the freedom to make his own choices, including the freedom to scratch and gouge himself and the “dignity” of being able to take “risks” with his health. It required that he be free to refuse to go to school, to work, or even to a doctor. J.V. moved into a Job Path apartment in Queens in November, 1996. Job Path had no experience in treating severe self-abuse. The nonaversive advocates who were now in charge of J.V.'s destiny refused to communicate with JRC or JRC’s physician concerning any aspect of his condition, including where he was living. J.V.'s new placement was applauded by Positive Behavior Support advocates and by New York Times reporter N. R. Kleinfield, who wrote four lengthy articles about J.V. in 1997. Unfortunately, J.V. resumed his scratching behaviors and developed serious blood and bone infections requiring hospitalization in December, 1997—only 13 months after he had entered Job Path. J.V. stopped eating, dropped to 59 pounds, became unconscious and deteriorated to the point that last rites were administered. Although he later regained consciousness and was discharged from the hospital, by February 1999 his infections reached his spinal cord, paralyzing him in both legs. On October 27, 1999, J.V. died at age 25. J.V.'s obituary made no mention of the fact that JRC had successfully treated the self-abusive behaviors that eventually took his life, or of the role that the nonaversive advocates had played in prematurely removing J.V. from JRC. The obituary did, however, quote Job Path director Fredda Rosen as saying, proudly, “…he had the life he wanted… the best life that he could have. If that’s what this experiment proves, that’s a lot…J.V. paved the way…What he did will change other people’s lives.” Ms. Rosen apparently believes that J.V.'s living in Job Path’s apartment for a few years and dying at age 25 was preferable to providing J.V. with proven behavioral treatment that could have given him a chance to have a long and healthy life. Does it make any sense to allow an incompetent person to forsake a proven, effective, life-saving treatment and to “choose,” in the name of Positive Behavior Support, to scratch and gouge himself to death at age 25? Did J.V. knowingly consent to be the subject of Ms. Rosen’s “experiment?” Or was this a fatal case of the triumph of a politically correct human service ideology over common sense—at J.V.'s expense? New York Times four-part series on J.V.'s life: |