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May. 30th, 2004 06:26 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
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Shocks used to control autistic son
Parents defend prod as best hope
By Michael Higgins
Tribune staff reporter
Published May 30, 2004
When Bradley Bernstein has a violent outburst at his Chicago group home, the staff responds the way his parents have instructed. They shock the 45-year-old autistic man with an electric cattle prod.
The device delivers a jolt to Bradley's arm or leg that feels like a bee sting, quelling the angry rages that often have caused him to bang his head against hard objects or punch himself in the face until he's bruised and bloody.
Fran Bernstein and her husband, Robert, say "the shocker" is the best way to control their son, and they have defended the practice successfully for more than three decades. But in December, the new owners of Bradley's group home announced they intend to stop the shocks.
"This can't just keep going on," said Art Dykstra, executive director of Trinity Services Inc. in Joliet, which took over Bradley's group home last year. "I am just strongly opposed to it, and I don't think it's appropriate in Bradley's case at all."
The Bernsteins have taken Trinity to court over that decision, saying it violates a settlement they reached with the state Department of Human Services in 1987.
Their motion seeking to enforce the earlier settlement will determine the future treatment of Bradley, whose behavioral and medical problems have made him one of the most expensive group home residents in Illinois history.
The case casts a spotlight on one of the most controversial issues in the field of autism and mental retardation: Whether it's ethical to use pain to control self-destructive behavior.
For now, a court order forces Trinity's staff to continue to use the electric prod. In the first three months of this year, Bradley was shocked 14 times, said group home officials.
The Bernsteins worry that without the threat of electric shocks, Bradley, who also suffers from severe mental retardation, would become too unruly for a group home and would be confined to a state psychiatric hospital.
"Because of the shocker, he has been able to learn," said Fran Bernstein, 72, who lives with her husband in Lincolnshire. "He has stayed calmer. He's able to go to a movie or a restaurant. He's able to live a more normal kind of life. ... It is the most humane thing we could be doing for Bradley, no matter what anybody says."
Advocates for the disabled decry electric shocks as cruel. At least two states, Pennsylvania and Nevada, have outlawed the practice. Illinois officials say that except for Bradley, none of the 16,900 developmentally disabled people who live at state-funded homes and other facilities gets shocks.
"It's akin to torture," said Steven Eidelman, executive director at the ARC of the United States, the largest advocacy group for people with mental retardation. "If this were happening in wartime to a prisoner, it would be against the Geneva Convention."
Bradley Bernstein speaks only eight to 12 words, communicating mostly through looks and gestures. He leads people to things he wants.
Other medical problems complicate his situation. Left unattended, he eats inedible objects. Once, he swallowed 90 coins; more recently, he ate a Styrofoam cup. He is allergic to many psychiatric medications.
Most troubling is his self-destructive behavior, which was hard to control when he was a boy, and nothing short of frightening as he grew to 5 foot 10 and a solidly built 225 pounds.
"When I came here in 1995, it was unbelievable," said Pat Coy, chief executive officer of Blare House, which houses 72 residents, including Bradley, at homes in the Chicago area. "He's extremely strong. Three, four people weren't even enough when he got really upset."
Said Fran Bernstein: "You have no idea how hard he hits himself. ... It's like pounding against a wall."
People with severe self-destructive behavior--as many as 25,000 nationwide, a federal panel has estimated--often punch or bite themselves, or bang their heads violently. They may do so to gain attention, express frustration or for reasons experts don't fully understand.
Over the years, some group homes and schools for the disabled have used all manner of punishments to try to deter such behavior, including hot sauce on a resident's tongue or the smell of ammonia.
Trend away from aversives
The trend in the last two decades has been against the use of such punishments, often called aversives. Experts instead have tried to figure out what situations trigger the behavior and give disabled persons some other way to communicate their needs or problems.
But the medical and psychological professions continue to struggle with whether aversives might be appropriate when nothing else works.
"It's about as controversial as an issue gets in this field," said Paul Appelbaum, a psychiatrist and specialist in medical ethics at the University of Massachusetts Medical School in Worcester, Mass. "The potential for abuse is real, but there's also a potential for benefit for some patients at least."
Even the Bernsteins' critics concede that the couple have pioneered helping people with autism in Illinois. In 1971, the Bernsteins founded one of the state's first schools for autistic children, Rimland School in Evanston.
In 1980, they started the state's first group home specifically for people with autism. And in 1984, the Bernsteins opened Blare House, which included a home in Schaumburg where Bradley lived for 19 years. He moved to a home in Rogers Park last year when the Schaumburg home closed.
Along the way, the Bernsteins say they have seen teachers and doctors try various methods to restrain or prevent Bradley's outbursts.
They have seen him placed in a time-out room, where he hit himself more. They've seen him wrestled to the ground and tied to chairs and beds. The Rimland School once put plaster of Paris tubes on his arms to stop him from hitting himself, but the tubes were heavy and prevented him from bending his arms, Fran Bernstein said.
In one incident, when Bradley was about 11, Fran Bernstein said she was called to his school because he had been hitting himself. She arrived to find that a teacher had tied him to a chair, leaving the deeply disabled boy to struggle helplessly in front of his classmates and wet himself, she said.
The idea to use an electric prod originated at a special school in Florida, which Bradley attended from age 4 to 9, she said. Fran Bernstein said she began using the shocker when Bradley was about 14.
The first shocker was a long, red livestock prod, about the size of a track baton. That prod was later replaced by a smaller livestock prod, the Hot-Shot Power-Mite, the size of two cigarette packs.
The electric shocks usually stopped him from hitting himself, and the threat of further shocks prevented many outbursts, Fran Bernstein said.
Her commitment to the device was cemented in 1986 when Bradley had cataract surgery, leaving his eyes vulnerable to any pounding. "That's the only way he can communicate with you, is eye contact," Bernstein said. "If he was blind, he would be lost."
That year, state officials threatened to withdraw Bradley's funding if the shocker wasn't discontinued. The Bernsteins sued, and after a five-month trial, a Cook County judge ruled that the shocks could continue.
State allows use of shocks
In 1987, state officials signed a settlement that approved a treatment plan for Bradley and stated that "the use of contingent electric shock at Blare House is necessary to insure Bradley's right to `adequate and humane care and services.'"
The years that followed were good ones, the Bernsteins said. Bradley had one-to-one staffing around the clock. He had a car, driven by a staff member, to get him to appointments or activities. He painted, and eventually, his handpainted designs were placed on ties, shirts, scarves and other items, which Blare House sells at a retail store called Designs by BB and Company in Park Ridge.
The 1987 settlement and later revisions gave group home workers authority to shock Bradley--usually after warning him once--for hitting or banging his head, biting himself or being physically aggressive. Bradley's psychologist filed reports to the court showing how many times he had been shocked and for what reasons.
The number of shocks varied. He might go months without being shocked or be shocked 20 times in a week.
But across the country, the controversy over such aversives continued to boil. In 1989, a panel at the National Institutes of Health issued a report that said painful punishments such as electric shock could be used as a last resort if closely monitored. But even that tentative endorsement brought attacks from disability rights groups.
NIH officials have since backed away from the report, issuing a disclaimer that says they no longer view it as guidance for medical practice.
Now, most facilities that treat self-destructive behavior will not use painful punishments because of the increased effectiveness of positive approaches and the advocacy of disability rights groups, said Wayne Fisher, executive director of the Marcus Behavior Center in Atlanta.
The center takes in about 50 children each year with severe self-destructive behavior and reduces that behavior by 80 percent or more in about 80 percent of cases, Fisher said.
But Fisher said that in a small number of cases--fewer than 10 in the last 15 years--he has concluded that a client could not be helped by non-aversive measures. In those cases, Fisher said, he told parents about facilities that use shock.
"It's tough to say to a parent, `We can't help you. These are the only options you have left.'" Fisher said. "But sometimes you get to that point."
Is Bradley just such an exceptional case?
Fran Bernstein believes the trial in 1986 answered that question. In the motion filed in January, the Bernsteins' attorney called the shocker "the most essential and unique aspect" of Bradley's program and warned that ending the shocks would trigger a "drastic and potentially catastrophic change."
When a psychologist from the state Department of Human Services reviewed Bradley's case in 2002, he recommended that the group home "reduce the reliance" on electric shock but did not suggest ending it.
Dykstra and Coy, however, say that Bradley is not as violent or hard to control as when he was younger. Dykstra contends that he is not even the most difficult client at Trinity.
Dykstra said using shocks on Bradley strikes him as so wrong he has considered disobeying the order. "I think there will come a point in time, where I'll say, `We're not going to do this. This is nuts,'" Dykstra said.
Meanwhile, every Sunday, Bradley Bernstein comes for dinner at his parents' apartment. He listens to music, lounges in his room and interacts with his family to the extent he is able.
"He doesn't talk to me, but I talk to him and with the eye contact, it's like he's responding," Fran Bernstein said. "It's a pleasure to watch him. He's come a long way."
There's rarely a reason to use the shocker, Fran Bernstein said. But "he knows it's there."
Shocks used to control autistic son
Parents defend prod as best hope
By Michael Higgins
Tribune staff reporter
Published May 30, 2004
When Bradley Bernstein has a violent outburst at his Chicago group home, the staff responds the way his parents have instructed. They shock the 45-year-old autistic man with an electric cattle prod.
The device delivers a jolt to Bradley's arm or leg that feels like a bee sting, quelling the angry rages that often have caused him to bang his head against hard objects or punch himself in the face until he's bruised and bloody.
Fran Bernstein and her husband, Robert, say "the shocker" is the best way to control their son, and they have defended the practice successfully for more than three decades. But in December, the new owners of Bradley's group home announced they intend to stop the shocks.
"This can't just keep going on," said Art Dykstra, executive director of Trinity Services Inc. in Joliet, which took over Bradley's group home last year. "I am just strongly opposed to it, and I don't think it's appropriate in Bradley's case at all."
The Bernsteins have taken Trinity to court over that decision, saying it violates a settlement they reached with the state Department of Human Services in 1987.
Their motion seeking to enforce the earlier settlement will determine the future treatment of Bradley, whose behavioral and medical problems have made him one of the most expensive group home residents in Illinois history.
The case casts a spotlight on one of the most controversial issues in the field of autism and mental retardation: Whether it's ethical to use pain to control self-destructive behavior.
For now, a court order forces Trinity's staff to continue to use the electric prod. In the first three months of this year, Bradley was shocked 14 times, said group home officials.
The Bernsteins worry that without the threat of electric shocks, Bradley, who also suffers from severe mental retardation, would become too unruly for a group home and would be confined to a state psychiatric hospital.
"Because of the shocker, he has been able to learn," said Fran Bernstein, 72, who lives with her husband in Lincolnshire. "He has stayed calmer. He's able to go to a movie or a restaurant. He's able to live a more normal kind of life. ... It is the most humane thing we could be doing for Bradley, no matter what anybody says."
Advocates for the disabled decry electric shocks as cruel. At least two states, Pennsylvania and Nevada, have outlawed the practice. Illinois officials say that except for Bradley, none of the 16,900 developmentally disabled people who live at state-funded homes and other facilities gets shocks.
"It's akin to torture," said Steven Eidelman, executive director at the ARC of the United States, the largest advocacy group for people with mental retardation. "If this were happening in wartime to a prisoner, it would be against the Geneva Convention."
Bradley Bernstein speaks only eight to 12 words, communicating mostly through looks and gestures. He leads people to things he wants.
Other medical problems complicate his situation. Left unattended, he eats inedible objects. Once, he swallowed 90 coins; more recently, he ate a Styrofoam cup. He is allergic to many psychiatric medications.
Most troubling is his self-destructive behavior, which was hard to control when he was a boy, and nothing short of frightening as he grew to 5 foot 10 and a solidly built 225 pounds.
"When I came here in 1995, it was unbelievable," said Pat Coy, chief executive officer of Blare House, which houses 72 residents, including Bradley, at homes in the Chicago area. "He's extremely strong. Three, four people weren't even enough when he got really upset."
Said Fran Bernstein: "You have no idea how hard he hits himself. ... It's like pounding against a wall."
People with severe self-destructive behavior--as many as 25,000 nationwide, a federal panel has estimated--often punch or bite themselves, or bang their heads violently. They may do so to gain attention, express frustration or for reasons experts don't fully understand.
Over the years, some group homes and schools for the disabled have used all manner of punishments to try to deter such behavior, including hot sauce on a resident's tongue or the smell of ammonia.
Trend away from aversives
The trend in the last two decades has been against the use of such punishments, often called aversives. Experts instead have tried to figure out what situations trigger the behavior and give disabled persons some other way to communicate their needs or problems.
But the medical and psychological professions continue to struggle with whether aversives might be appropriate when nothing else works.
"It's about as controversial as an issue gets in this field," said Paul Appelbaum, a psychiatrist and specialist in medical ethics at the University of Massachusetts Medical School in Worcester, Mass. "The potential for abuse is real, but there's also a potential for benefit for some patients at least."
Even the Bernsteins' critics concede that the couple have pioneered helping people with autism in Illinois. In 1971, the Bernsteins founded one of the state's first schools for autistic children, Rimland School in Evanston.
In 1980, they started the state's first group home specifically for people with autism. And in 1984, the Bernsteins opened Blare House, which included a home in Schaumburg where Bradley lived for 19 years. He moved to a home in Rogers Park last year when the Schaumburg home closed.
Along the way, the Bernsteins say they have seen teachers and doctors try various methods to restrain or prevent Bradley's outbursts.
They have seen him placed in a time-out room, where he hit himself more. They've seen him wrestled to the ground and tied to chairs and beds. The Rimland School once put plaster of Paris tubes on his arms to stop him from hitting himself, but the tubes were heavy and prevented him from bending his arms, Fran Bernstein said.
In one incident, when Bradley was about 11, Fran Bernstein said she was called to his school because he had been hitting himself. She arrived to find that a teacher had tied him to a chair, leaving the deeply disabled boy to struggle helplessly in front of his classmates and wet himself, she said.
The idea to use an electric prod originated at a special school in Florida, which Bradley attended from age 4 to 9, she said. Fran Bernstein said she began using the shocker when Bradley was about 14.
The first shocker was a long, red livestock prod, about the size of a track baton. That prod was later replaced by a smaller livestock prod, the Hot-Shot Power-Mite, the size of two cigarette packs.
The electric shocks usually stopped him from hitting himself, and the threat of further shocks prevented many outbursts, Fran Bernstein said.
Her commitment to the device was cemented in 1986 when Bradley had cataract surgery, leaving his eyes vulnerable to any pounding. "That's the only way he can communicate with you, is eye contact," Bernstein said. "If he was blind, he would be lost."
That year, state officials threatened to withdraw Bradley's funding if the shocker wasn't discontinued. The Bernsteins sued, and after a five-month trial, a Cook County judge ruled that the shocks could continue.
State allows use of shocks
In 1987, state officials signed a settlement that approved a treatment plan for Bradley and stated that "the use of contingent electric shock at Blare House is necessary to insure Bradley's right to `adequate and humane care and services.'"
The years that followed were good ones, the Bernsteins said. Bradley had one-to-one staffing around the clock. He had a car, driven by a staff member, to get him to appointments or activities. He painted, and eventually, his handpainted designs were placed on ties, shirts, scarves and other items, which Blare House sells at a retail store called Designs by BB and Company in Park Ridge.
The 1987 settlement and later revisions gave group home workers authority to shock Bradley--usually after warning him once--for hitting or banging his head, biting himself or being physically aggressive. Bradley's psychologist filed reports to the court showing how many times he had been shocked and for what reasons.
The number of shocks varied. He might go months without being shocked or be shocked 20 times in a week.
But across the country, the controversy over such aversives continued to boil. In 1989, a panel at the National Institutes of Health issued a report that said painful punishments such as electric shock could be used as a last resort if closely monitored. But even that tentative endorsement brought attacks from disability rights groups.
NIH officials have since backed away from the report, issuing a disclaimer that says they no longer view it as guidance for medical practice.
Now, most facilities that treat self-destructive behavior will not use painful punishments because of the increased effectiveness of positive approaches and the advocacy of disability rights groups, said Wayne Fisher, executive director of the Marcus Behavior Center in Atlanta.
The center takes in about 50 children each year with severe self-destructive behavior and reduces that behavior by 80 percent or more in about 80 percent of cases, Fisher said.
But Fisher said that in a small number of cases--fewer than 10 in the last 15 years--he has concluded that a client could not be helped by non-aversive measures. In those cases, Fisher said, he told parents about facilities that use shock.
"It's tough to say to a parent, `We can't help you. These are the only options you have left.'" Fisher said. "But sometimes you get to that point."
Is Bradley just such an exceptional case?
Fran Bernstein believes the trial in 1986 answered that question. In the motion filed in January, the Bernsteins' attorney called the shocker "the most essential and unique aspect" of Bradley's program and warned that ending the shocks would trigger a "drastic and potentially catastrophic change."
When a psychologist from the state Department of Human Services reviewed Bradley's case in 2002, he recommended that the group home "reduce the reliance" on electric shock but did not suggest ending it.
Dykstra and Coy, however, say that Bradley is not as violent or hard to control as when he was younger. Dykstra contends that he is not even the most difficult client at Trinity.
Dykstra said using shocks on Bradley strikes him as so wrong he has considered disobeying the order. "I think there will come a point in time, where I'll say, `We're not going to do this. This is nuts,'" Dykstra said.
Meanwhile, every Sunday, Bradley Bernstein comes for dinner at his parents' apartment. He listens to music, lounges in his room and interacts with his family to the extent he is able.
"He doesn't talk to me, but I talk to him and with the eye contact, it's like he's responding," Fran Bernstein said. "It's a pleasure to watch him. He's come a long way."
There's rarely a reason to use the shocker, Fran Bernstein said. But "he knows it's there."
