Her son’s alleged offense? Refusing to take off his jacket.
His mom, Cheryl McCollins, saw the video that day in 2002 and filed a lawsuit against Judge Rotenberg Educational Center in Canton, Mass., the only school in the country today that still gives self-injurious students electric shocks to stop their behavior. In 2012, a decade after the incident, the video finally went public.
And the Food and Drug Administration didn’t miss it.
Now, after years of litigation with the state of Massachusetts, and after thousands of comments on the FDA’s 2016 proposal to ban electric-shock devices as treatment for self-injurious behavior, the federal agency has followed through and banned them.
The FDA issued the final rule on Wednesday, describing the ban as a “rare step” for the agency but saying the devices “present an unreasonable and substantial risk of illness or injury to the public” — particularly to vulnerable people who may be nonverbal and incapable of telling caretakers they are hurt. The agency noted that the ban specifically affects the Rotenberg school.
The FDA said it will allow the school and any individuals using the devices 180 days to comply with the new rule, giving them time to transition students to a different treatment plan.
“Since [electrical stimulation devices] were first marketed more than 20 years ago, we have gained a better understanding of the danger these devices present to public health,” William Maisel, a director in the FDA’s Center for Devices and Radiological Health, said in a statement. “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 Judge Rotenberg Center couldn’t immediately be reached for comment early Thursday morning, but said in a statement to local outlets that it plans to fight the FDA’s ban in court.
“[The] FDA made a decision based on politics, not facts, to deny this life saving, court-approved treatment,” the school said in its statement, according to WGBH.
The school also pointed to a 2018 ruling by a Massachusetts probate judge in favor of the school. The judge found the state failed to show that the treatment “does not conform to the accepted standard of care for treating individuals with intellectual and developmental disabilities.”
Wednesday’s ban follows years of controversy — peaking with the McCollins lawsuit in 2012 — and an ongoing tug-of-war between those for and against the treatment. On one side are desperate parents who say the treatment works for their severely disabled children, who engage in behaviors ranging from banging their heads on the wall to biting through their tongues to attacking others.
On the other side are disability rights advocates and the broader medical community who reject the treatment, with some calling it torture.
That debate was the subject of a 2016 feature in The Washington Post Magazine, “An electric shock therapy stops self-harm among the autistic, but at what cost?” At the time, the school’s executive director, Glenda Crookes, told The Post that what happened to McCollins all those years ago is “not representative of what really happens at the school.” She said officials have changed since then and would have stopped the electric shocks sooner.
Today, between 45 to 50 students receive electric-shock treatment at the school as an extreme form of “aversive conditioning,” according to the FDA. The Rotenberg Center serves both children and adults. Aversive conditioning punishes bad behavior by administering the shocks when students become too aggressive, or is intended to stop them from engaging in self-injurious behavior before it happens.
At the school, the shock-devices are hidden in students’ backpacks, while the electrodes are hooked up to their skin.
As Debra Bruno reported for The Post in 2016: “When any of the 46 residents at JRC outfitted with the device does something wrong, like attack another person or himself, a staff member pushes a button on the remote control to deliver a two-second shock designed to be painful enough that the recipient will think twice about doing it again. There are also preemptive shocks for something as seemingly benign as standing up from a desk without permission or raising one’s arms, which center officials say can be a prelude to worse behavior.”
The electric-shock device is intended to be reserved as a last resort when alternative treatments fail, Crookes said at the time. Some parents have sworn by its effectiveness in children for whom no other treatment worked, as they testified in comments submitted to the FDA. In a 2016 letter, the mother of a mentally disabled man who spent 13 years at JRC, and who had problems hitting, biting and kicking others, said of aversive therapy: “As a mother I can say it saved his life.”
But on Monday, the FDA said that evidence of the device’s effectiveness was “weak,” while the risks far outweighed any perceived benefit.
“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, posttraumatic stress disorder, pain, burns and tissue damage,” the agency wrote. “In addition, many people who are exposed to these devices have intellectual or developmental disabilities that make it difficult to communicate their pain.”
Those strongly supporting the ban in comments to the FDA included the Justice Department, which said shocking people should not even be considered “treatment,” and dozens of disability rights advocates and mental and behavioral health clinicians.
Then in handwritten cursive was a letter from Cheryl McCollins.
The electric-shock devices, she wrote, “represent a barbaric method of dealing with human beings. The devices were not just harmful to those who received the shocks physically, but they had an emotional effect as well.
“In the case of my son, that effect has been enduring,” wrote McCollins, who reached a settlement in her lawsuit against the school in 2012. “Andre has never fully recovered from that experience.”