New York State could end funding of shock treatment for disabled residents under proposal
Cornnis and Patricia Crawford with a photo of their daughter, Erin, in their Brooklyn apartment on Aug. 31. “It saved her life,” Cornnin Crawford said of the shock treatment Erin has received. Credit: Ed Quinn
ALBANY — A state legislative proposal would stop the state from spending millions of dollars a year for the care of severely disabled New Yorkers at a Massachusetts center that uses shock treatments banned in New York state.
State Comptroller’s Office records show the state has paid the Judge Rotenberg Educational Center in Canton, Massachusetts $150.4 million over the last 10 years for students and adults. Most students transition into adult residents and the cost is covered by the state until the an appropriate spot opens up in a New York facility. Only adults can receive the shock treatments after medical, legal and parental approvals.
The treatments, which have been used to control violence or misbehavior at the center since the 1990s, have brought on controversy. Opponents, including many medical associations and patient advocates, call it a painful punishment for some of society’s most vulnerable adults. Supporters, including some medical clinicians and parents whose adult children are shocked, call it the only therapy that works, a last resort that has transformed the lives of already-suffering patients for the better.
The Rotenberg Center, the only center in the nation that provides electrical stimulation devices for some of its residents, currently has 53 patients who are approved for what are called “skin shocks” by clinicians, a judge and by the residents’ parents. Typically, the center has about 55 residents authorized for these treatments at any one time.
The state said 78 students, up to age 21, and 72 adults at the center are from New York. Of that total, 21 New Yorkers may receive the shock aversion therapy under court orders, according to the Rotenberg Center. The state prohibits the treatments from being used on students, and no adult from New York admitted to Rotenberg after 2013 may receive the treatments, according to state Office for People with Development Disabilities spokeswoman Erin Silk and state Education Department spokesman JP O’Hare.
The “aversive conditioning” practice is used to treat patients by making them feel pain to stop self-abusive or violent behavior at each incident so that the behavior becomes associated with the pain and is avoided. Parents and other supporters of the shock treatments said it’s necessary because all other medications and other treatments at other facilities have failed these patients.
The treatments are delivered through battery backpacks and waist packs connected to electrodes on their arms and legs. Rotenberg officials try to dispel the idea that the shocks are the same as electroconvulsive therapy, which has been portrayed violently in movies with electrodes zapping electric current into brains.
The power of the shock varies with the patient. The jolt ranges from what supportive parents called similar to a bee sting. The U.S. Food and Drug Administration called it a sharp cutting and burning sensation that can damage tissue.
Although several major pediatric medicine associations, as well as autism and disability advocacy groups, oppose the efficacy and ethics of the treatment, clinicians at Rotenberg said they have proved skin shocks work in many cases of residents with severe developmental disabilities or emotional and behavioral disorders to prevent them from hurting themselves or others.
Some legislators, though, said the electric shocks are barbaric.
“No facility that thinks it’s acceptable to electroshock children can be trusted with their care,” said Sen. Jabari Brisport (D-Brooklyn), co-sponsor of the bill to end state funding for the treatment.
“Our nation has found excuses for far too long to lock away disabled children and subject them to inhumane practices,” said Brisport, chairman of the Senate Children and Families Committee.
Yet parents of residents who receive the shocks tell Newsday that the treatment with “electrical stimulation devices” is the only therapy that helped their children after dozens of other centers in New York rejected them, and after dozens of emergency hospital stays.
“It basically saved my daughter’s life,” said Marcia Shear of Woodbury. She said the skin shocks at the center have allowed her daughter, like all the New Yorkers who reside full time at the Rotenberg Center, to come home for visits without the need for wearing the electrical devices.
The proposed legislation is prompted by a 2021 federal court decision that nullified a 2016 federal ban on use of electrical stimulation devices on disabled patients. Under state law, school districts reimbursed by the state must pay for care of these patients until they reach the public education cutoff age of 21, after which federal programs will cover the cost.
The court ruled in a lawsuit brought by the Rotenberg Center that the FDA didn’t have the authority to “interfere with the practice of medicine.” The court didn’t address “whether substantial evidence supported the FDA’s factual determination.”
The FDA study found the sensation of the electric shocks used at Rotenberg varies greatly with the patient and the behavior and can include tingling, pain and muscle contraction. The FDA cited “burns, tissue damage and errant shocks from device misapplication or failure.” The report cited research that said the sensations could include “painful shocks that are described as sharp, cutting, or lacerating” and “pain that was pinching, pressing, or gnawing.”
The FDA also warned that the practice could lead to post-traumatic stress, nightmares, flashbacks, panic and rage, and changes in sleep patterns.
Two parents who took the shocks as a test before allowing their adult children to be hooked up, however, told Newsday it was a mild pain — but that the benefits to their daughters have been immeasurable.
Shear described the shock she received as “like a two-second bee sting. It was definitely annoying, but it was enough so that it would work.”
Shear said she was desperate. Her daughter, Samantha, grew up thrashing, throwing herself on the floor, hitting her head and eyes. At 12, Samantha’s actions detached both retinas while at a center for severely disabled children in the state. Her parents feared brain damage and deafness would follow.
“No one could handle her,” Shear said. “They said, ‘We can’t handle your daughter … if the Judge Rotenberg Center can’t handle her, good luck.’ ”
Now 30, Samantha has calmed. In September, she’s going home for another visit.
“She’s a pleasure to be with,” the mother said. “We can take her out and before we couldn’t. She’s like a little lady now. It sounds barbaric, but it’s not. … don’t judge until you’ve been in our shoes.”
Cornnis Crawford of Brooklyn took a shock before he would let the Rotenberg Center use the treatment on his daughter, Erin.
“It feels like a cigarette lighter that is hot and you put it on your skin,” the father said. “It just stops you, it’s nothing that goes through your body.”
At the time, Erin had been banging her head so often, the father said it was almost football-shaped.
“There was nothing New York offered that would help,” he said of other treatment centers. “All they were doing was really making it worse.”
Erin, now 35, also still a resident at the Rotenberg Center, goes home for visits and is no longer a danger to herself or others, Crawford said.
“It saved her life,” the father said. “It’s a dream you would hope would happen for your kid.”
Opponents, however, said isolated cases like these don’t make up for the potential harm that can come to children and adults who can’t speak for or defend themselves.
The bill is proposed as “Andre’s Law,” after 18-year-old Andre McCollins of Brooklyn, who was strapped to a board and electroshocked 31 times over seven hours in 2002 at Rotenberg before he was hospitalized for injuries, according to the bill and its supporters. Afterward, his family withdrew its consent for the shocks and removed their son from Rotenberg.
“We understand the way it sounds,” said Nathan Blenkush, a psychologist and director of clinical services at the Rotenberg Center. “But this is a life-changing treatment for many patients, a last-resort treatment that has dramatically affected their lives.”
Most patients had been treated for early autism or other issues from 2 to 5 years old, were in special education since kindergarten, received years of medication and counseling and were probably rejected from traditional special education programs 15 or 20 times and hospitalized 20 or 30 times more for their behavior, Blenkush said. One woman had to be restrained 5,000 times in her young life, causing 340 staff injuries, he said.
He said the nine-point process required before shocks are administered is extensive. It includes parental consent, which parents may revoke at any time; consent by a lawyer and psychologist hired to represent the patient; a treatment plan; treatment status reports submitted to a judge, who must hold an annual review; and a court hearing after which a judge must approve or reject use of electroconvulsive treatment. The case is also evaluated by a clinicians’ peer review committee and a human rights committee.
If an approved patient bangs their head against the wall or floor or takes other actions that hurt themselves or others, they receive a shock. Some patients get multiple shocks in a day, and others can go months without a shock, Blenkush said. The average is less than one shock per week, according to the center. For some, the treatments eventually are no longer needed.
“That’s why the parents fight so hard to maintain this,” he said. “I’m not saying it’s 100% effective … these are very individual circumstances. This is the problem we have with these laws.”
But Assemb. Harvey Epstein, the bill’s other co-sponsor, said the practice is “at best horrific.”
“Obviously there are some parents who feel this is something that can help their children, and that is their private choice,” Epstein (D-Manhattan) said. “But it really is not where we should be spending our government dollars … It’s pretty clear to me that, even for adults, that electric shock is barbaric.”
ALBANY — A state legislative proposal would stop the state from spending millions of dollars a year for the care of severely disabled New Yorkers at a Massachusetts center that uses shock treatments banned in New York state.
State Comptroller’s Office records show the state has paid the Judge Rotenberg Educational Center in Canton, Massachusetts $150.4 million over the last 10 years for students and adults. Most students transition into adult residents and the cost is covered by the state until the an appropriate spot opens up in a New York facility. Only adults can receive the shock treatments after medical, legal and parental approvals.
The treatments, which have been used to control violence or misbehavior at the center since the 1990s, have brought on controversy. Opponents, including many medical associations and patient advocates, call it a painful punishment for some of society’s most vulnerable adults. Supporters, including some medical clinicians and parents whose adult children are shocked, call it the only therapy that works, a last resort that has transformed the lives of already-suffering patients for the better.
The Rotenberg Center, the only center in the nation that provides electrical stimulation devices for some of its residents, currently has 53 patients who are approved for what are called “skin shocks” by clinicians, a judge and by the residents’ parents. Typically, the center has about 55 residents authorized for these treatments at any one time.
WHAT TO KNOW
- A state legislative proposal would stop the state from spending millions of dollars a year for the care of severely disabled New Yorkers at a Massachusetts center that uses shock treatments.
- Critics say the treatments, used to control violence or misbehavior, are a painful punishment for some of society’s most vulnerable adults.
- Supporters call it the only therapy that works for some severely disabled adults, a last resort that has transformed their lives for the better.
The state said 78 students, up to age 21, and 72 adults at the center are from New York. Of that total, 21 New Yorkers may receive the shock aversion therapy under court orders, according to the Rotenberg Center. The state prohibits the treatments from being used on students, and no adult from New York admitted to Rotenberg after 2013 may receive the treatments, according to state Office for People with Development Disabilities spokeswoman Erin Silk and state Education Department spokesman JP O’Hare.
The “aversive conditioning” practice is used to treat patients by making them feel pain to stop self-abusive or violent behavior at each incident so that the behavior becomes associated with the pain and is avoided. Parents and other supporters of the shock treatments said it’s necessary because all other medications and other treatments at other facilities have failed these patients.
The treatments are delivered through battery backpacks and waist packs connected to electrodes on their arms and legs. Rotenberg officials try to dispel the idea that the shocks are the same as electroconvulsive therapy, which has been portrayed violently in movies with electrodes zapping electric current into brains.
Mitchell and Marcia Shear with their daughter, Samantha. Credit: Shear Family
The power of the shock varies with the patient. The jolt ranges from what supportive parents called similar to a bee sting. The U.S. Food and Drug Administration called it a sharp cutting and burning sensation that can damage tissue.
Although several major pediatric medicine associations, as well as autism and disability advocacy groups, oppose the efficacy and ethics of the treatment, clinicians at Rotenberg said they have proved skin shocks work in many cases of residents with severe developmental disabilities or emotional and behavioral disorders to prevent them from hurting themselves or others.
Some legislators, though, said the electric shocks are barbaric.
“No facility that thinks it’s acceptable to electroshock children can be trusted with their care,” said Sen. Jabari Brisport (D-Brooklyn), co-sponsor of the bill to end state funding for the treatment.
“Our nation has found excuses for far too long to lock away disabled children and subject them to inhumane practices,” said Brisport, chairman of the Senate Children and Families Committee.
Yet parents of residents who receive the shocks tell Newsday that the treatment with “electrical stimulation devices” is the only therapy that helped their children after dozens of other centers in New York rejected them, and after dozens of emergency hospital stays.
“It basically saved my daughter’s life,” said Marcia Shear of Woodbury. She said the skin shocks at the center have allowed her daughter, like all the New Yorkers who reside full time at the Rotenberg Center, to come home for visits without the need for wearing the electrical devices.
The proposed legislation is prompted by a 2021 federal court decision that nullified a 2016 federal ban on use of electrical stimulation devices on disabled patients. Under state law, school districts reimbursed by the state must pay for care of these patients until they reach the public education cutoff age of 21, after which federal programs will cover the cost.
The court ruled in a lawsuit brought by the Rotenberg Center that the FDA didn’t have the authority to “interfere with the practice of medicine.” The court didn’t address “whether substantial evidence supported the FDA’s factual determination.”
The FDA study found the sensation of the electric shocks used at Rotenberg varies greatly with the patient and the behavior and can include tingling, pain and muscle contraction. The FDA cited “burns, tissue damage and errant shocks from device misapplication or failure.” The report cited research that said the sensations could include “painful shocks that are described as sharp, cutting, or lacerating” and “pain that was pinching, pressing, or gnawing.”
The FDA also warned that the practice could lead to post-traumatic stress, nightmares, flashbacks, panic and rage, and changes in sleep patterns.
Two parents who took the shocks as a test before allowing their adult children to be hooked up, however, told Newsday it was a mild pain — but that the benefits to their daughters have been immeasurable.
Shear described the shock she received as “like a two-second bee sting. It was definitely annoying, but it was enough so that it would work.”
Shear said she was desperate. Her daughter, Samantha, grew up thrashing, throwing herself on the floor, hitting her head and eyes. At 12, Samantha’s actions detached both retinas while at a center for severely disabled children in the state. Her parents feared brain damage and deafness would follow.
“No one could handle her,” Shear said. “They said, ‘We can’t handle your daughter … if the Judge Rotenberg Center can’t handle her, good luck.’ ”
Now 30, Samantha has calmed. In September, she’s going home for another visit.
“She’s a pleasure to be with,” the mother said. “We can take her out and before we couldn’t. She’s like a little lady now. It sounds barbaric, but it’s not. … don’t judge until you’ve been in our shoes.”
Cornnis Crawford of Brooklyn took a shock before he would let the Rotenberg Center use the treatment on his daughter, Erin.
“It feels like a cigarette lighter that is hot and you put it on your skin,” the father said. “It just stops you, it’s nothing that goes through your body.”
At the time, Erin had been banging her head so often, the father said it was almost football-shaped.
“There was nothing New York offered that would help,” he said of other treatment centers. “All they were doing was really making it worse.”
Erin, now 35, also still a resident at the Rotenberg Center, goes home for visits and is no longer a danger to herself or others, Crawford said.
“It saved her life,” the father said. “It’s a dream you would hope would happen for your kid.”
Opponents, however, said isolated cases like these don’t make up for the potential harm that can come to children and adults who can’t speak for or defend themselves.
The bill is proposed as “Andre’s Law,” after 18-year-old Andre McCollins of Brooklyn, who was strapped to a board and electroshocked 31 times over seven hours in 2002 at Rotenberg before he was hospitalized for injuries, according to the bill and its supporters. Afterward, his family withdrew its consent for the shocks and removed their son from Rotenberg.
“We understand the way it sounds,” said Nathan Blenkush, a psychologist and director of clinical services at the Rotenberg Center. “But this is a life-changing treatment for many patients, a last-resort treatment that has dramatically affected their lives.”
Most patients had been treated for early autism or other issues from 2 to 5 years old, were in special education since kindergarten, received years of medication and counseling and were probably rejected from traditional special education programs 15 or 20 times and hospitalized 20 or 30 times more for their behavior, Blenkush said. One woman had to be restrained 5,000 times in her young life, causing 340 staff injuries, he said.
He said the nine-point process required before shocks are administered is extensive. It includes parental consent, which parents may revoke at any time; consent by a lawyer and psychologist hired to represent the patient; a treatment plan; treatment status reports submitted to a judge, who must hold an annual review; and a court hearing after which a judge must approve or reject use of electroconvulsive treatment. The case is also evaluated by a clinicians’ peer review committee and a human rights committee.
If an approved patient bangs their head against the wall or floor or takes other actions that hurt themselves or others, they receive a shock. Some patients get multiple shocks in a day, and others can go months without a shock, Blenkush said. The average is less than one shock per week, according to the center. For some, the treatments eventually are no longer needed.
“That’s why the parents fight so hard to maintain this,” he said. “I’m not saying it’s 100% effective … these are very individual circumstances. This is the problem we have with these laws.”
But Assemb. Harvey Epstein, the bill’s other co-sponsor, said the practice is “at best horrific.”
“Obviously there are some parents who feel this is something that can help their children, and that is their private choice,” Epstein (D-Manhattan) said. “But it really is not where we should be spending our government dollars … It’s pretty clear to me that, even for adults, that electric shock is barbaric.”
Michael Gormley has worked for Newsday since 2013, covering state government, politics and issues. He has covered Albany since 2001.
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