When was electric shock therapy banned

When was electric shock therapy banned
The ethics of ESDs were under fire for quite some time before their outright US ban in March 2020. Credit: Shutterstock

Electrical stimulation devices (ESDs) are designed to deliver electric shocks to a patient via electrodes attached to their skin. In certain care settings they have been deployed to interrupt self-injurious or aggressive behaviour in patients with intellectual or developmental disabilities, which in turn is hoped to condition them to stop engaging in said behaviour in the future. The ethics of ESDs were under fire for quite some time before their outright US ban in March 2020.

Conditions such as autism can make it difficult for those affected to process and express distressing emotions like pain or fear, which can lead them to lash out and attempt to harm themselves or others. While this kind of behaviour needs to be effectively managed to prevent injury, the effectiveness of ESD-centric aversive therapy is questionable on both ethical and efficacy fronts. The medical consensus is now that these behaviours should instead be managed through positive reinforcement, such as rewards and teaching appropriate skills.

The outright ban of medical devices in the US is rare. Historically, the US Food and Drug Administration (FDA) has only banned prosthetic hair fibres and powdered surgeons’ gloves, making ESDs the third type of device banned in the agency’s history.

The Judge Rotenberg Educational Center (JRC) in Massachusetts was understood to be the only facility in the US still using the treatment at the time of the ban, with only 45 to 50 residents thought to have been subject to it on a regular basis. Both the JRC and the JRC Parents Association strongly opposed the FDA’s ruling.

In a statement issued to multiple media outlets, the JRC Parents Association said: “[The] FDA’s actions today can only be interpreted one way: FDA is saying that our children’s lives do not matter.

“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.”

Disability rights advocates and the FDA itself have rejected these claims across the board.

FDA director of product evaluation and quality Dr William Maisel said: “Through advancements in medical science, there are now more treatment options available to reduce or stop self-injurious or aggressive behavior, thus avoiding the substantial risk ESDs present.”

The JRC has faced several civil lawsuits alleging mistreatment of former residents.

1971: Matthew Israel founds the Behavior Research Institute

Matthew Israel founded the Behavior Research Institute in Rhode Island, a facility which would later move to Massachusetts and in 1994 become known as the JRC. The centre opened itself up to patients with severe behavioural issues beyond the reach of other institutions, relying on aversive therapy to condition their violent outbursts. This involved making them smell ammonia, smacking them with a spatula and forcing them to wear a helmet, which would play white noise into their ears. These practises would later become the basis for an ESD known as the Graduated Electronic Decelerator (GED).

1984: SIBIS becomes commercially available in the US

The Self-Injurious Behavior Inhibiting System (SIBIS) was released onto the US market by Human Technologies. The device was designed to reduce self-injurious behaviour directed at the head, such as punching, and delivered an electric shock to the wearer when triggered. The shock was mild, and lasted for 0.2 seconds.

1988 – 1990: Israel invents his own ESD

Israel used SIBIS on 29 students between 1988 and 1990. During this period, there was a day where he administered 5,000 shocks to a 12-year-old patient named Brandon. Seeing no positive change in his behaviour, Israel came to the conclusion that the shocks administered by the device were not painful enough to be truly aversive. When Human Technologies refused to build a stronger SIBIS at his request, Israel decided to build his own ESD, the GED.

The GED is placed inside a backpack from which electrodes placed over the body are strung. The original GED delivers a 15 to 30 milliamp shock, which lasts for two seconds. Later, the GED-4 was invented, delivering three times the charge of the original GED. The shocks are known to be extremely painful, and can leave burns, scabs and scars on the skin.

2006: JRC condemned by the state of New York

The New York State Education Department released a report saying the Judge Rotenberg Center was shocking patients “without a clear history of self-injurious behaviours.” The report found that residents were shocked with the GED for nagging, swearing or failing to maintain a neat appearance.

2007: Prank calls made instructing staff to shock students

Staff at one of JRC’s residential homes received a call they believed to be from a senior manager, instructing them to administer shocks to two male students aged 16 and 19. Over the following three hours, one of the boys was given 77 shocks, while the other received 29. It was later revealed that the phone call had been made by a prankster.

As a result of this incident, Israel was forced to resign as head of the school and was sentenced to five years’ probation. Prosecutors at the time said Israel had ordered his employees to destroy surveillance videos taken during the night in question.

2012: Footage of restrained student subject to ESD goes viral

A video from JRC showing 18-year-old Andre McCollins being shocked by an ESD was released to the public. In the video, he is restrained face-down, and is given repeated shocks, which cause him to cry out in pain. His mother, Cheryl McCollins, goes on to file a lawsuit against the centre.

2013: JRC condemned by the UN

The UN released a report concluding that the “rights of students of the JRC subjects to electric shocks and physical means of restraint have been violated under the UN convention against torture.”

2014: FDA takes first step to ban ESDs

The FDA held a public meeting of its Neurological Devices Panel to weigh up whether or not to ban the use of ESDs for self-injurious behaviour. The public comment period that followed drew more than 1,500 responses, with feedback overwhelmingly supporting a ban.

2016: FDA issues formal proposal to ban ESDs

Two years on from its first meeting into the matter, the FDA announced a formal proposal to ban ESDs like GEDs that are used to try and treat self-injurious behaviour and aggression.

2020: ESDs officially banned

The FDA officially banned ESDs to treat self-injury or aggressive behaviour on 4 March 2020, saying the devices “present an unreasonable and substantial risk of illness or injury.” It accepted that evidence showed that ESDs were linked to significant physical and psychological risks, including depression, anxiety, post-traumatic stress disorder, physical pain, burns and tissue damage, with weak evidence to support their effectiveness as a treatment for self-injury or aggression against this risk profile.

The ban took effect following its publication in the federal register on 6 April 2020, with compliance required within 30 days. For these patients, compliance was required within 180 days, to allow them time to transition to another treatment to manage their behaviour.

A Massachusetts school can continue to use electric shock devices to modify behavior by students with intellectual disabilities, a federal court said this month, overturning an attempt by the government to end the controversial practice, which has been described as “torture” by critics but defended by family members.

In a 2-to-1 decision, the judges ruled that a federal ban interfered with the ability of doctors working with the school, the Judge Rotenberg Educational Center, to practice medicine, which is regulated by the state. The Food and Drug Administration sought to prohibit the devices in March 2020, saying that delivering shocks to students presents “an unreasonable and substantial risk of illness or injury.”

Although the F.D.A.’s ban was national, the school in Canton, Mass., appears to be the only facility in the United States using the shock devices to correct self-harming or aggressive behavior. The center serves and houses students — both children and adults — who have intellectual disabilities or behavioral, emotional or psychiatric problems.

Critics have called the practice dehumanizing and abusive, with the United Nations labeling it “torture” and the F.D.A. saying it can cause long-lasting trauma.

“How would anyone feel if they were being shocked on a daily basis and couldn’t get away from it?” said Sam Crane, the legal director of the Autistic Self Advocacy Network. “It’s terrifying that this can happen to people.”

But the school, where the practice has been in place for decades, and some parents of students have defended it, saying it stopped the students from hurting themselves or others when nothing else could.

“He was nearly dead when he arrived,” Paul Peterson of Massachusetts said of his son, a 50-year-old who has received the shock treatment at the facility for decades. “He had been inducing vomiting, so he was extremely malnourished and underweight.”

The treatment, in which students wear a special fanny pack with two protruding wires, typically attached to the arm or leg, can deliver quick shocks to the skin when triggered by a staff member with a remote-control device.

Some 300 students live in group homes operated by the school, which was founded in 1971 and provides education and vocational services to residents whose conditions range from autism to psychosis. The shock devices are approved for use on 55 people — all adults currently, although some started the treatment when they were children — whose parents requested and consented to it, said Michael Flammia, a lawyer for the center. The treatment must also be approved for use on specific students by a local judge.

Those people demonstrate extremely dangerous behavior, Mr. Flammia said, such as banging their heads to the point of retinal detachment and blindness, self-biting, breaking their own bones and violently attacking others.

In a statement after the federal court’s decision, the school wrote, “With the treatment, these residents can continue to participate in enriching experiences, enjoy visits with their families and, most importantly, live in safety and freedom from self-injurious and aggressive behaviors.”

The F.D.A.’s attempt last year to ban the procedure was the culmination of a decades-long battle by critics — including legislation, lawsuits and petitions — to end the electric shocks, which they argue have been administered excessively and can cause lasting damage.

In one 2002 episode captured on video, Andre McCollins, then an 18-year-old student at the center, did not take off his jacket as instructed and was shocked repeatedly while screaming. His family sued, and the case was settled under confidential terms in 2012.

The F.D.A. said that evidence of the devices’ effectiveness was “weak,” with no evidence of long-term behavioral changes in residents, while the risks of their use included depression, anxiety, post-traumatic stress disorder, pain, burns and tissue damage. It recommended alternative treatments instead.

Rico Torres, a former student, wore a shock device for most of a decade, starting at age 8, he told NBC News this year. “What they’re doing is just taking people that have issues and just building more,” Mr. Torres said.

Former residents have also complained of burn marks, accidental shocks and other abuses. “It’s not safe. It doesn’t feel safe,” Jennifer Msumba, a student from 2002 to 2009, said in testimony to the F.D.A. in 2014. “I ended up having nightmares weekly, if not nightly.”

The center said that any abuse of the shock devices or mistreatment of patients “is taken very seriously.” Public records show that in recent years, the center has spent hundreds of thousands of dollars on lobbying in both New York State, where more than half the center’s students are from, and Massachusetts. It has also spent more than a quarter-million dollars over the past decade on lobbying federal entities, including the F.D.A., the White House, the Senate and the House of Representatives.

Shain Neumeier, a lawyer who has represented former residents and uses the pronoun “they,” said that many were not able to consent to the treatment themselves, and that parents did not always understand what it entailed. They argue that there is a difference between people shocking themselves to curb habits like smoking, which the F.D.A. permits, and shocking others — who may not be able to articulate their needs — as a behavioral punishment.

“This approach involves a lot of dehumanization, an idea that you’re basically training a dog,” they said. “Or you’re trying to get a person to do what you want, rather than follow their own goals and get their own needs met.”

But Larry Mirro, from Island Park, N.Y., said the treatment was life-changing for his son Billy, 39. Before being enrolled at the center in 2003, his son took many different medications with varying side effects to treat his autism, and repeatedly abused himself, Mr. Mirro said.

Most facilities either could not help or did not accept his son. “He smashed his head all over the place,” Mr. Mirro said.

Before consenting to electric shock therapy for Billy, Mr. Mirro said, he did research and tested the shock on himself — it felt like a bee sting, he said. After his son started on the treatment, he noticed a change within six months.

“His behavior totally changed, where he had a life,” Mr. Mirro said. “He really had a life.”

After about 11 years, though, the family was forced to take Billy out of the facility because New York’s disability services office would no longer pay for the out-of-state facility, Mr. Mirro said. His son has since gone back on medications, he said, and gone blind from self-abuse.