The Judge Rotenberg Center, once again the center of national controversy over its use of painful electric shocks to treat intellectually or developmentally disabled patients, is a place of last resort. Desperate parents and guardians from all over the country send students to the Canton facility when nothing else has worked: when their loved ones have been kicked out of or rejected by other programs, hospitalized for weeks at a time, or subjected to medications that left them unresponsive.
Those parents are now the center’s most passionate defenders, and they’re speaking out as the Food and Drug Administration considers whether to ban the center’s use of the electric shock devices. As ghoulish as the treatment seems, some parents insist that it’s necessary for patients exhibiting self-injurious or aggressive behavior like biting themselves and head-banging. One father whose son has been at the center since 1988 told the Globe that his son blinded himself in one eye before the electric shock device enabled him to verbalize more, dress himself, and visit his family more often. Unlike some other programs, the center virtually never rejects or expels a student.
The plight of those parents underscores how few options they have. The FDA suffered a setback in its effort to stop the center’s use of so-called contingent skin shock when a federal appeals court overturned the agency’s ban. That March 2020 prohibition followed a four-year review that found that the treatment’s risks, including depression, anxiety, and post-traumatic stress, outweigh the benefits. But if the FDA appeals the ruling or establishes a more categorical ban, the government also needs to create more viable alternatives.
“Nobody wants to use contingent skin shock,” the center’s director, Glenda Crookes, told the Globe during a tour. But ever since its founding in Rhode Island in 1971 as the Behavioral Research Institute, the center has used “aversives” — physical punishments that originally included spanking, pinching, and forced ammonia inhalation — for behavioral correction when other treatments fail. The center eventually moved to Massachusetts and renamed itself in honor of Ernest Rotenberg, the Bristol County probate judge who halted an attempt by state authorities to ban aversives in 1986, following the death of a 22-year-old autistic man, Vincent Milletich, at one of the center’s group homes.
Around 1990, the JRC moved on to a new generation of aversives, including electric shocks. The shock device consists of batteries worn in a backpack or fanny pack that power electrodes in constant contact with the wearer’s skin. It can be triggered remotely by the center’s staff. While representatives of the school compare the shocks to bee stings, former student Jennifer Msumba called the feeling “a terrible pain” that led her to attempt escaping the center twice. The center’s founder, Matthew Israel, himself stated, “It has to hurt enough” to modify behaviors.
At times, however, the center has taken “treatment” to extremes. In 2002, for example, a student named Andre McCollins was shocked 31 times in just under seven hours, initially for refusing to remove his jacket and consequently for tensing up and screaming between shocks. McCollins was hospitalized for 37 days, and his mother settled a lawsuit against the school in 2012.
Currently, 52 of the center’s 280 students wear an electric shock device with parental or guardian consent and court approval. They are all adults deemed “treatment refractory” after alternative therapies failed. The center sets a maximum of 10 shocks per day before a clinician must approve further “applications” and claims that, on average, students receive less than one application per week.
Regardless of the policies surrounding its use, many medical experts argue that the device does not fundamentally reform behavior. “There was some data that people did learn faster, but the point was that once the negative goes away, the old habits come back,” said Catherine Lord, a psychiatry professor at UCLA’s medical school, of aversive therapy. The Judge Rotenberg Center’s director of clinical services, Nathan Blenkush, published findings that while electric shocks did reduce the frequency of targeted behaviors by up to 97 percent, less than 30 percent of patients observed over 20 years have been successfully removed from the device without recurrence of target behaviors.
Blenkush argues those numbers don’t indicate a treatment failure, though, and uses the term “prosthetic” to liken the electric shock device to other permanent medical devices that meaningfully improve quality of life. Advocates counter that using permanent threat of pain to modify behavior is inherently inhumane. In 2010, the United Nation’s Special Rapporteur on Torture called the center’s practices “torture.”
The continued reliance on such controversial practices is at least a partial consequence of the nation’s inability to provide better alternatives. “It’s a failure of our services that people feel that this is their only option,” Maura Sullivan, director of government affairs for advocacy group The Arc of Massachusetts, told the Globe. Families of Judge Rotenberg Center patients and disability advocates, often at odds, agree on these failures.
First among those failures is a shortage of medical experts and care staff qualified to manage the complexity of autism and other developmental or intellectual disabilities. Through her own experience as a mother of two sons with autism, Sullivan has seen firsthand the limited number of specialists with the expertise to manage self-injury and aggression. This scarcity manifests in the over-medication and prolonged hospital stays that many JRC parents have experienced. Many residential facilities also suffer from high staff turnover, which is particularly disruptive to patients with developmental or intellectual disabilities who benefit from continuity of care.
Second, too little is known about successful interventions for complex behavioral challenges. A select few schools, like Melmark New England and the New England Center for Children, are pioneering models of evaluation and intervention that use medical, psychological, educational, and environmental approaches to positively modify behavior. Although these schools publish their results, the body of research and experience is still limited, resulting in too few programs capable of supporting the most complex cases — cases where students end up on electric shock devices instead.
As a hub for health care and medical innovation, Massachusetts ought to be an incubator for humane, effective behavioral therapies. Decades of effort to #stoptheshock at the Judge Rotenberg Center in court or through regulatory processes have failed, overcome by tenacious families who see it as their only hope. Instead, the most effective path to eliminating shock treatments would be to render them obsolete.
Editorials represent the views of the Boston Globe Editorial Board. Follow us on Twitter at @GlobeOpinion.