Graduated electronic decelerator gets mixed reviews
Some families of residents at the Judge Rotenberg Center (JRC) in Canton, MA cite the graduated electronic decelerator (GED) as a life changing therapy tool that improved their children’s quality of life. Some patients who were recipients of the therapy have a very different perspective.
Both sides testified last month before the Massachusetts Legislature to voice their opposition and support of Bill H.180, which would ban the use of aversive therapies — such as the GED’s electric skin shocks — on disabled individuals.
JRC is the last institution in the United States to use such electric shock therapy. The GED was developed by Matthew Israel, Ph.D., the founder of the center, and is intended to help avert dangerous or aggressive behavior.
The device has a controversial history. Former employees have spoken out about misuse and disturbing videos have surfaced showing patients being repeatedly shocked.
Nathan Blenkush, LP, the current clinical director at the JRC, defended the device’s therapeutic benefits before the Legislature. “Severe problem behaviors are extraordinary clinical conditions that profoundly impact the patient and the patient’s family,” he testified. “It is difficult to overstate the devastating nature of these types of conditions.”
Prior to the GED, some patients struck themselves in the head repeatedly, causing blindless and injury, he said. Others, he continued, have lost body parts, and have chronic wounds from biting their own skin. Others have extraordinary aggression and need to be restrained by multiple people.
“These are not conditions treated in an outpatient setting,” he said, noting these patients’ aggression condemns them to an isolated life. “For them, it is not hyperbole to say the GED is the most important treatment of their lives.”
Blenkush testified after the treatment there was typically a 100% reduction in the violent behaviors. Patients receive less than one skin shot per week on average, he said.
Jennifer Msumba, who is on the autism spectrum, told a different story. She testified that she was on the GED devices for all seven years she was a student at JRC between 2002-2009. While acknowledging that when she was admitted to the JRC she exhibited strong self-harm behaviors, she said the GED made her terrified.
“I was on high alert and in constant anxiety. I was sick to my stomach, and couldn’t eat or sleep,” she said, testifying that she was purposely put into “instigating environments” and was “in constant fear” of being shocked. She still experiences PTSD.
“I was shocked in my sleep for things I didn’t do, [and experienced] accidental misfires and worst of all, staff abuse of the device. I was shocked for body ticks which I can’t control and things like waving my hands in front of my face and crying.”
She now resides in a new facility out of state, where she said she initially reverted to her old behaviors and self-harm. “Instead of hurting me, they helped me figure out why these things were happening and helped me learn to cope and self-regulate. I was also allowed access to medication I needed for obsessions and compulsions.
In contrast, parents of two current JRC residents testified that the GED was a lifeline to their children. Louisa Goldberg’s 42-year-old son has lived at the JRC for 22 years. His quality of life prior the GED was poor, she said.
His aggressive behavior injured several family members and residential care staff at the facilities he was placed at were afraid to be with him. Restraints were ineffective and high doses psychotropic drugs made him sleep most of the day.
“The two-second skin shots broke his cycle of aggression. He is now awake and alert and lives a very good life,” Goldberg said. “This device has freed my son and many others from their cycle of disabling behaviors.”
Lauren Emmick testified that her now 32-year-old adopted daughter has lived at the JRC for 15 years. She was previously on 25 different psychiatric medications that were not successful in curbing her violent behavior, and went through six emergency psychiatric hospitalizations between the ages of 10 and 17.
Emmick was initially hesitant about placing her daughter at the center because of concerns about the GED. Positive reinforcements only were tried for six months at the JRC, but her treatment only became successful after the GED aversive therapy.
“She is now safe and stable. We do not know of any acceptable alternative to JRC’s program. We love our daughter and want to do the very best for her,” said Emmick. “If our daughter left JRC, we firmly believe she would be in a lockdown facility or jail because of her aggression.”
Nancy Weiss, a retired professor at the University of Delaware, is the co-author of “Pain and Shock in America: Politics, Advocacy, and the Controversial treatment of People with Disabilities,” a historical case study of the JRC. She has been studying the practices at the facility since 1992.
In an interview, she noted that almost all of the 35 former residents she recently interviewed said they were non-violent before going to JRC but became aggressive because of the cruel ways they were treated at the JRC. Only two had a disability; most were detained for juvenile offenses.
“Over the last 30 years, there have been consistent advances in applying positive behavioral techniques,” said Weiss. “I’ve worked with people who have significant behavioral challenges and I know it is not necessary to terrorize or inflict pain on people with disabilities.”