The U.S. Food and Drug Administration claims the shock devices used at a Massachusetts school are unreasonably harmful, and have proposed banning the devices.
But new federal legislation could prevent the FDA from doing anything about it — again.
In March, the FDA announced it was again proposing a ban on electrical stimulation devices (ESD) intended to reduce or stop self-injurious or aggressive behavior, the agency said in a statement.
It originally banned ESDs in 2020, but it was overturned after the U.S. Court of Appeals for the D.C. Circuit found that the ban went beyond the FDA’s authority, ruling that it was a regulation of the practice of medicine.
But the FDA pushed back, encouraged by seven U.S. senators — though none were from Massachusetts. And three years later, the FDA proposed banning the devices.
“Since that decision, changes to the [Federal Food, Drug, and Cosmetic Act] make clear that the FDA has authority to issue a ban such as the previous ban on ESDs for self-injurious or aggressive behavior, which applies to specific intended uses,” the FDA said in March.
The proposed ban was open for comment until May 28. After that, the FDA planned to “review and consider comments before determining whether to issue a final rule.”
But once again, the FDA’s authority is being challenged. This time through a bill now making its way across Capitol Hill.
What is the Judge Rotenberg Center?
The Judge Rotenberg Center (JRC), a special needs day and residential facility in Canton, has become known across the country for using electric shock devices, which are attached to the residents at all times, on people demonstrating self-injurious or aggressive behavior.
It is the only facility in the country to use them and has been the center of many advocates’ concerns for decades.
The JRC has said the device is “lifesaving” and that it is important it “remains available to those for whom all other treatment options have been tried and failed,” the JRC and the JRC Parents Association wrote in a statement after a recent court ruling that allowed the devices to continue to be used.
The facility has said that its clients have had behaviors that result in “profound physical injuries including blindness and mutilation” prior to using the devices.
There are more than 300 people who attend or live at JRC, and about 55 people are approved for the devices.
Although since a Supreme Court ruling in September, JRC is allowed to add new people to the devices.
- Read more: ‘It is not too late’: Advocates encourage lawmakers to act on bill banning electric shock
In 2012, a video was released during a court case against JRC showing student Andre McCollins being tied by the arms and legs to a restraint board and shocked multiple times.
CBS News confirmed he was shocked more than 30 times over seven hours.
His mother, Cheryl McCollins, told CBS News her son was first shocked for not taking off his coat, and was shocked again for tensing his muscles and screaming. His mother claims he has suffered permanent damage as a result.
The JRC said it no longer uses the restraint board and shocks together.
In November, Jennifer Msumba, who is on the autism spectrum, spoke to the state Legislature’s Joint Committee on Children, Families and Persons with Disabilities during a hearing about her experience attached to the devices at JRC.
She said she came to JRC with these “very strong self-harm behaviors,” including putting her head through windows, she told the committee. While her behaviors stopped while she was on the device, her “behaviors weren’t fixed.”
“They were just manifested differently, into explosions. I would hold it in and then all of a sudden explode,” she said.
She lived at JRC from 2002 until 2009 and was on the shock devices for all seven years. But it wasn’t just the electric shocks that she said traumatized her.
She also was denied food and “was one of those stripped of all my clothes, tied to a restraint board and forcefully scrubbed while male staff watched on the video monitors.”
“I did not consent to any of this treatment,” she said.
She has since left to live at a different placement, which she said has helped her. But when she arrived, she went back to her old self-harming behaviors.
“Instead of hurting me, they helped figure out why these things were happening and took the time to do so. They helped me learn to cope and self-regulate, [and] also allowed access to medication that I really needed,” she said.
In 2021, Msumba released a book, “Shouting At Leaves” regarding her time at the center. She also shares some of her story on TikTok.
“I have a real life now,” she said.
The Judge Rotenberg Center (JRC) is a controversial facility that has become known for using electric shock devices on residents.
A new bill
An annual appropriations bill now before Congress could prove to be the latest hurdle for advocates determined to ban the shock devices.
The Fiscal Year 2025 bill for the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies was approved by a subcommittee after adding new language regarding the FDA’s ESD ban.
In the bill, it states that “the Federal Food, Drug, 7 and Cosmetic Act (21 U.S.C. section 360f(a)) is amended—by inserting ‘‚except for devices that are authorized or ordered for an individual by a court of competent jurisdiction’ after ‘to make such intended use or uses a banned intended use or uses.’”
All the EDS devices are court-ordered at JRC, meaning this bill, if it’s signed into law, would exclude JRC from the FDA’s ruling and make the ban irrelevant.
This language, JRC told MassLive, is important, because the original ruling involving the FDA allowed the FDA to take “away parents’ rights to decide the appropriate treatment for their loved ones, instead placing this important decision in the hands of the government.”
This move, JRC said, is congress protecting the “responsible use” of the devices, adding that the “treatment plan” is a “matter of life or death for the small number of our clients who depend on them.”
“The parents and guardians for these clients at JRC are committed to ensuring that this treatment remains available to those for whom all other treatment options have been tried and failed,” it said in a statement to MassLive.
U.S. Rep. Sanford D. Bishop, D-Ga., said he was “absolutely appalled” at the added language, calling it, and a few other parts of the bill, “poison pill policy riders.”
U.S. Rosa DeLauro, D-Conn., said the addition was “particularly barbaric.”
“A provision in this bill would prevent [the] FDA from stopping the use of an inhumane electrical shock device on young people at risk of hurting themselves or others, despite the well-documented dangers and shocking cruelty of this practice,” she said.
Although the FDA does not comment on pending legislation, it told MassLive it has talked “at length” about “the overwhelming scientific evidence” and how experts in the field state that there is “harm” posed by the devices and that it is “unreasonable and substantial.”
In 2020, the FDA specifically stated the shocks are “extremely painful.”
In their petition, federal regulators compared the devices to a “dentist drilling on an un-anesthetized tooth’; a ‘bulging and a ruptured disc’; like ‘a thousand bees stinging you in the same place for a few seconds,’ and ‘the most painful thing I’ve ever experienced.’”
The bill will next be voted on by the full House Appropriations Committee on July 10 before it has a chance of heading to the House floor for a vote.
What are the other options?
Even if the FDA’s reach is limited by the proposed bill, Massachusetts could still step in.
In November, testimony was heard from many during a hearing regarding Bill H.180, which, if passed, would prohibit the use of “hitting, pinching, and electric shock for the purposes of changing the behavior of the person with a physical, intellectual or developmental disability.”
The bill expands beyond electric shock. However, it was the focus of many people’s testimony at the time.
During the hearing, state Rep. Danielle Gregoire, D-4th Middlesex, the bill’s sponsor, called on the Legislature to act.
“The FDA tried and the Congress has tried. And basically, the courts time and again, have left it to this legislature to act on this issue,” she said. “So, that’s why I’m coming again today to try to get us to act.”
The bill is still under consideration by lawmakers after crossing a key procedural hurdle earlier this year. But no further action has been taken since.
Gregoire suggested looking at other schools and facilities across the country as they are not using the shock devices, including the New England Center for Children in Southborough.
“I implore you to work with me and help us get this across the finish line. And stop this forever,” Gregoire said.
State Attorney General Andrea J. Campbell has also spoken out against the devices saying she was “profoundly disappointed” by a September Supreme Judicial Court that allowed the devices to be used.
“I stand ready to work with the Legislature and the Governor to take action to end this practice,” she wrote on X, formerly known as Twitter, on Sept. 7, 2023, adding that she was also calling on continued efforts from the FDA.
In November, she wrote to the joint committee on Children, Families and Persons with Disabilities to express her support for the Massachusetts bill, emphasizing the ability JRC now has to expand the device’s use since the September ruling.
“The most straightforward way for skin shock and other painful aversives to be eliminated in Massachusetts is for this Legislature to ban them,” she wrote. “This bill, if enacted, would send a powerful message about our state’s commitment to its most vulnerable citizens and that we will not tolerate the use of painful aversive treatments on people with disabilities.”
For now, Autistic Self Advocacy Network is asking people to “spend the next month telling the House Appropriations Committee how important this issue is.”
“Together, we can still #StopTheShock,” it states.
