SPRINGFIELD, Mass. — The Food and Drug Administration said last week that it would ban electrical stimulation devices (ESDs) used for self-injurious or aggressive behavior. The devices are used at one facility in the country — the Judge Rotenberg Educational Center (JRC), a day and residential school for those with special needs in Canton.

While the rare ban is considered a “significant step forward” and giving people with disabilities and advocates “a sigh of relief” advocates said — they also said it’s not enough.

“A ban will do nothing to undo the decades of torture that people confined to JRC have had to suffer through until now,” said Lydia Brown, associate for disability rights and algorithmic fairness at Georgetown Law’s Institute for Tech Law and Policy. “And Massachusetts has a responsibility to make reparations to the survivors.”

Brown, also an adjunct lecturer in disability studies at Georgetown University, points to the multiple opportunities they believe Massachusetts has had to stop the use of ESDs.

The facility introduced these types of devices in the 1980s, Mother Jones reported. Since then, the facility has had numerous news articles written about its practices, including stories from MassLive, a number of court cases and a 2012 viral video that shows a student screaming and asking for it to stop.

“That hurts. That hurts,” the student can be heard saying in a panicked voice. “Stop. Stop for real.”

Mother Jones reported that about 30 years ago, Matthew Israel used the devices on 29 students. One of those students received more than 5,000 shocks in one day.

“I knew it was risky to use the shock in large numbers, but if I persevered that day, I thought maybe it would eventually work,” Israel said, according to MotherJones. “There was nothing else I could think of to do … but by the time it went into the 3,000 or 4,000 range, it became clear it wasn’t working.”

But the school continued anyway — totaling more than 5,000.

JRC reported to the FDA it now shocks students less than once a week on average.

Israel eventually stepped down from his position at JRC, after a 2007 prank call said two teenage students were misbehaving. The students were given dozens of shocks that night. Prosecutors said Israel ordered his employees to destroy surveillance videos from that night, according to WBUR.

“(The ban is) so overdue, they started shocking people in 1988,” Brown said. “It’s been condemned twice by the United Nations, the Department of Justice opened a civil rights investigation. And yet, it’s still legal. Technically, it is still legal for 30 days in general. And up to six months for some other people.”

The ban goes into effect 30 days after publication in the Federal Register, and for those who need a transition period compliance is required 180 days after publication.

The FDA ruled the devices cause a number of significant psychological and physical risks, “including worsening of underlying symptoms, depression, anxiety, post traumatic stress disorder, pain, burns and tissue damage.”

Both the JRC Parents Association and JRC say they will fight the FDA’s decision.

The FDA received 1,500 comments on the proposal for the ban, but JRC complains that the FDA would not meet with parents of the people at the facility and that the agency didn’t visit the school.

Some of the comments in the proposal include a comment from the U.S. Department of Justice’s Civil Rights Division, saying “The substantial risk of injury is readily apparent … It is unreasonable to subject people, especially children, to certain pain when other approaches can effectively provide quality care.”

It also includes a 69-page comment from Glenda Crookes, executive director of Judge Rotenberg Educational Center.

“JRC has provided an analysis of all patients treated with the GED devices over the past 16 years,” Crookes wrote. “In brief, this substantial body of data shows that the benefits of ESD treatment in this specific and limited patient population far outweigh the risks.”

In another comment to the FDA, made on May 17, 2016, Richard Doherty wrote a three-page letter detailing how the devices saved his son and the lack of options Doherty and his wife felt they had to turn to.

“He is non-verbal, will most likely require residential placement for the rest of his life and he will need the use of the GED as well,” Doherty wrote. “Would you deny a diabetic their insulin?”

JRC Parents Association said in a statement to MassLive, that the FDA’s decision “can only be interpreted one way: FDA is saying that our children’s lives do not matter.”

They said the agency is offering no alternative treatments and “is moving to take away the only treatment that has successfully allowed them to stop maiming themselves, spend time with their family and to learn and engage in the community instead of being in a locked room while physically, mechanically or chemically restrained by drugs.”

But advocates say this is not the only option.

“It is simply not the case the Judge Rotenberg Center is serving as the most severely disabled people in the country,” said Ari Ne’eman, visiting scholar at the Lurie Institute for Disability Policy at Brandeis University. “For every person in the Judge Rotenberg Center who is subject to this device, there are people outside the center receiving community based services without the use of aversives that are just as severely disabled.”

Many parents of students at JRC have been turned down by or kicked out of other facilities.

People living at JRC aren’t just from Massachusetts. According to The Guardian, they come from 15 states including Massachusetts, New York, Illinois and California. In 2014, ProPublica found that New York taxpayers spend $30 million a year sending children from their state to the Massachusetts school.

In his letter, Doherty noted several programs or schools near his home that his son was not accepted to or asked to leave from.

“I can still remember the look on my wife Linda’s face when I arrived home from work and she told me that she had been contacted by the Kramer Learning Center of Bayshore and informed that the bus would not be coming for him,” he wrote. “We were at the end of our rope.”

It leaves many parents wondering where to turn. That’s when, Brown claims, JRC steps in.

“They prey upon parents’ fears,” Brown said. “They are worried for their child’s safety, for their own or for other people’s safety. They prey upon the fear that nothing will help and that their children need some kind of intense intervention to protect the child … And that if they don’t agree to do it, then they’re actually failing their child.”

Disability Justice attorney Shain Neumeier said this is why Massachusetts needs to work with students and their caregivers to find community-based options outside of JRC.

“They should be finding people places in the community where they can live independently,” Neumeier said. “Where they can get past this and receive services with their families and friends.”

But this is just the beginning steps in a much longer fight, advocates say.

“The fact that the FDA has acted to ban this device really should prompt the state of Massachusetts to think more comprehensively about next steps,” Ne’eman said.

Advocates hope this means having a larger conversation about banning all aversives.

Other methods of aversives include prolonged restraint, inhalation of ammonia, food deprivation and sensory assault, oftentimes deliberately inflicting pain “using someone’s disability against them as the weapon,” Brown said.

Unlike the shock devices, these are happening across the U.S. — but with the decision from the FDA, advocates are saying it’s time for Massachusetts to have a hard look at itself.

“I do think the state of Massachusetts really needs to wrestle with the question of, ‘How was this allowed to happen for so long?'” Ne’eman said.

© 2020 MassLive.com
Distributed by Tribune Content Agency, LLC

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