The U.S. Food and Drug Administration published a final rule Wednesday to ban electrical stimulation devices, or ESDs, used to discourage aggressive behavior or self-injury among patients with mental disabilities.
In the announcement, the FDA said the shock treatment devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated through new or updated device labeling.
The ban referenced the sole facility still using these devices in the United States: the Judge Rotenberg Educational Center, or JRC, in Canton, Massachusetts. According to the FDA, between 45 and 50 individuals are still being exposed to the devices, which administer electrical shocks into the skin of patients to attempt to condition them to stop engaging in aggressive behavior.
Evidence indicates a number of significant psychological and physical risks are associated with the use of these devices, including worsening of underlying symptoms, depression, anxiety, post-traumatic stress disorder, pain, burns and tissue damage, the FDA announcement read. In addition, many people who are exposed to these devices have intellectual or developmental disabilities that make it difficult to communicate their pain.
In a statement sent to WGBH News, the JRC said the facility will continue to advocate for and will litigate to preserve this court-approved life-saving treatment.
[The] FDA made a decision based on politics, not facts, to deny this life saving, court-approved treatment.
According to the JRC, the facility provided countless hours of testimony and volumes of information indicating the positive impacts of shock treatment, in addition to making staff clinicians and family members of clients available to the FDA over the past several years.
After multiple requests for the Federal agency to visit the only facility impacted by this rule, the FDA stuck its head in the sand and refused to visit, the statement read.
In a statement provided by the JRC and attributed to the Judge Rotenberg Educational Center Parents Association, family members of loved ones write that they will continue to fight the FDA decision, or any attempt to make the treatment unavailable.
[The] FDAs actions today can only be interpreted one way: FDA is saying that our children's lives do not matter, the statement said. A government agency offering no effective alternative treatments for our loved ones 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. It is a matter of life and death.
Shain Neumeier, a Springfield-based disability rights attorney, has opposed the facility for years, and represented a California family who claims their daughter was abused at JRC in 2018, including being restrained more than 45 times in less than three months.
In a phone interview Wednesday, Neumeier said the FDA ban is an enormous step for patients with disabilities.
This is a huge victory, one that's been a long time coming, since the 80s, Neumeier said. In the disability community, everybody's been overjoyed.
If nothing else, it puts JRC on par with the other worst facilities out there, she continued, instead of giving them this extra privilege to use this particular form of torture.
The New York State Education Department published a report following investigations in 2005 and 2006 into the facilitys use of electric shock therapy, finding that shocks were used for behaviors that shouldnt call for their use, like nagging, swearing and failing to maintain a neat appearance.
A series of lawsuits have been filed against the school, including an appeal brought by the human rights organization Mental Disability Rights International, claiming that the facilitys use of electric shock treatment was a human rights violation.
Its torture on the basis of disability, Neumeier said. We're not doing this, to my knowledge, to prisoners in the United States. There was an abuse scandal back in 2004 in Abu Ghraib about people posing with electrical wire on them, thinking they could be shot. This is no different from that.
According to Neumeier, there is a culture of abuse at JRC, including an overuse of restraint, and abuses including beatings administered by staff. I can't say whether that's an official policy or not, Neumeier said, but it keeps happening and it's tolerated on some level and generally known.
A spokesperson from JRC sent statements from the school and the parents organization, but declined to respond to specific allegations about abusive staff or cultural issues within the facility.
The educational center, which was first established in Providence in 1971 as the Behavior Research institute, has a controversial history regarding shock treatment therapy and other allegations of abuse. In 1979, the state of New York where the majority of patients were from issued a report describing conditions at the facility as the singular most depressing experience that team members have had, and detailing physical abuse to patients.
The facility moved to Canton in 1996.
Federal and Massachusetts authorities launched two investigations into a case where an autistic student at JRC was restrained for seven hours and shocked many times for disobeying staff members, hiding under a table and refusing to take off his coat.
There is a reason there's a reason why these kinds of things are happening repeatedly at the school, Neumeier said, referencing the multiple investigations and reporters targeted at the facility. In large part its because of this strict behavioral regimen where its all about control and compliance, and not about treating people like human beings.
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FDA Bans Shock Device Used For 'Aggressive Behavior' On Mentally Disabled Patients At Massachusetts School - wgbh.org