Mandy Nichols and Mary Ellen Mayo of The Arc; Nathan Robinson and Lev Hirschhorn of Massachusetts Students Against the Judge Rotenberg Center; Gary Blumenthal, Executive Director of the Association of Developmental Disabilities Providers.

Bill sponsors Rep. Barbara L'Italien, Rep. John Scibak, Sen. Brian Joyce spoke in support of their legislation.

Senate President Therese Murray

New York attorney Kenneth Mollins

Showdown over shock therapy Testimony moves some critics; new bill would limit, not ban, treatment

By PATRICIA WEN

Boston Globe Staff

BOSTON - In a replay of a contentious scene that has unfolded many times over the past 20 years, supporters and opponents of the Judge Rotenberg Educational Center's use of shock therapy stood shoulder to shoulder in a State House hearing room yesterday as the Legislature considered sharply curtailing the school's controversial treatment approach.

Past efforts to prohibit all shock treatments have failed, but in an effort to break the logjam this year, some of the school's fiercest critics have offered a less aggressive alternative: Rather than an outright ban, the new bill would allow shocks to stop students from hurting themselves or others, but would prohibit shocks for more "minor" acts such as swearing, shouting, or failing to complete a task.

Critics, who have long condemned the center's shock therapy as cruel and barbaric, now say they have been partially swayed by years of testimony from allies of the special education school, largely parents, who have praised the facility as life-saving for mentally retarded and emotionally disturbed students.

Sponsors of the bill said they hope it would force the Rotenberg school, the only facility in the nation with such pervasive use of skin-shock treatments, to adopt a stricter standard for use of the unorthodox treatment. About 60 percent of the approximately 240 students at the Canton school can receive shock therapy under their treatment plans.

"Today we have an opportunity to act," said Representative John Scibak, a Hadley Democrat who is a cosponsor of the bill. "We cannot allow the status quo to exist."

But in daylong testimony before the joint House and Senate Committee on Children, Families and Persons with Disabilities, more than a dozen parents, relatives, and school officials said the school was an irreplaceable haven for mentally retarded and emotionally disturbed children, many who have previously been heavily sedated or expelled from other programs.

In one of the most powerful defenses of the school, Representative Jeffrey Sanchez, a Democrat from Boston, said the school has done more for his 31-year-old mentally retarded nephew than any other.

"He is alive today because of the [shock] treatment," Sanchez testified, while his nephew Brandon clung to him.

At the hearing attended by nearly 200 people, Sanchez said the Rotenberg school has a proud tradition of avoiding psychotropic drugs to control students, instead using shock treatments sparingly, as well as a reward system. Eddie Sanchez, Brandon's father, testified that the public has no idea about the nightmare that parents like him go through trying to find a safe educational environment for their severely retarded children.

"If you close the school, you take him home," Eddie Sanchez told the panel. "I can't do it."

Matthew Israel, founder and executive director of the 37-year-old Rotenberg Center, said the bill was hardly the compromise its sponsors contended. He said the legislation would gut the essence of his behavioral-control therapy. He said the bill would stop his staff from being able to administer shocks for outbursts and rebelliousness that can interrupt teaching in the classroom, as well as for behaviors that often precede violence or self-harm.

For instance, he said, students may be given two-second electrical shocks for getting out of their seat without permission because that act, in the past, has led to the student attacking a staff member. Similarly, a girl who has an obsession with pulling her hair out may receive a shock when her hand comes close to her scalp.

Israel, who has weathered two previous attempts by lawmakers to close his school, said, "In order to treat, you have to treat the antecedent."

He also criticized another provision, which would require the center to get the approval of a panel of psychological experts every 30 days for each student who would receive shock treatments. The bill would also require evidence that the treatments were reducing a student's violent behavior and that no alternative was effective.

Israel, however, said it was wrong to think that short-term shock therapy would always reduce violence for the long term. He likened shock treatment to a "prosthetic," such as an artificial limb or a pair of eyeglasses, that may be needed over the long haul. He said students are not shocked frequently - on average, once a week, he said.

Lawmakers, however, asked about the night last August when teenagers were wrongfully shocked dozens of times over a three-hour period at one of the school's group homes in Stoughton. A former student of the group home posed as a supervisor in the central office in Canton, calling the group home and commanding one of the staff members to shock one student 77 times, another 29 times. The caller said he was giving the orders based on instructions from Israel and his assistant director, Glenda Crookes.

Israel, sitting next to Crookes, told lawmakers he was horrified by the incident, describing it as being like 9/11 to him. He said the school has since initiated numerous changes, which include improved supervision at group homes and barring central office supervisors from ordering shock treatments from a remote location.

The case is under criminal investigation. State licensing investigators looking into the incident relied heavily on a videotape, made as part of the center's round-the-clock monitoring of students and staff in the school and 38 groups homes in surrounding communities.

Lawmakers asked Israel whether a copy of the tape was available, but he said it had been destroyed after he allowed some state investigators to view it. In an interview earlier this week, Israel said he routinely keeps videotapes for about 30 days and saw no need to keep the video from the August incident.

The joint House and Senate committee has not scheduled a vote on the bill. Supporters say they hope the bill, sponsored in the Senate by Brian Joyce, a Milton Democrat, will be passed by the committee in time for a full vote by the House and Senate by spring.

Senate President Therese Murray appeared at the hearing and described the measure as "excellent."

As a result of the controversy over shock therapy, some states have stopped sending new referrals to the Rotenberg school.

At yesterday's hearing, Greg Miller, a former Rotenberg staff member, said he quit after three years because he could not bear to see all the shock treatments administered to students, especially for minor infractions, such as stopping their work assignment for 20 seconds or closing their eyes at their desk.

He said some students had so many scabs from the electrical shocks that there was "no other place on the student's body to place electrodes without placing them on top" of more scabs. "Please stop shocking students for smaller behaviors," he pleaded to the committee.

'BARBARIC' OR LIFE-SAVING? IMPASSIONED, SPLIT TESTIMONY ON AVERSIVE TREATMENT

By KYLE CHENEY

State House News Service

BOSTON - Brandon Sanchez clung tightly to his uncle's waist, his head buried deeply in Jeffrey Sanchez's chest. At first it seemed like a loving embrace. Then Jeffrey Sanchez let go.

The first slap startled the hundreds of onlookers gathered at the State House before the Committee on Children, Families and Persons with Disabilities. Brandon's face twisted in agony and he continued to slap - squarely hitting himself on the left cheek with enough force to twist his neck in the other direction and to pierce an otherwise silent hearing room with smack after gut-wrenching smack. His uncle, a Jamaica Plain Democrat in the state House of Representatives, quickly grabbed Brandon's hand, embraced him again, and the slapping stopped.

Brandon Sanchez, 31, is one of 213 residents of the Canton-based Judge Rotenberg Center, where severely mentally and physically handicapped students are treated, as many as half of them with electric shock therapy, to stem behaviors like the one Brandon exhibited today. If it wasn't for the controversial electric shocks - a form of what is called "aversive therapy" - Brandon would be dead, his uncle and his father, Eddie Sanchez, argued today.

The committee, co-chaired by Sen. Karen Spilka and Rep. Cheryl Coakley-Rivera, heard impassioned arguments, some vilifying the Rotenberg school for its "barbaric" use of electric shock devices - known as GEDs - and others who said their lives would be immeasurably worse if it weren't for the aversive treatment.

"When Brandon was first brought into JRC, Brandon was clinically dead in my brother's arms," Rep. Sanchez told his colleagues on the committee. "This [electric shock treatment] has kept him alive."

The arguments centered around two bills, one that would restrict and regulate the use of aversive therapy, and another that would ban it outright. The former proposal, a first-time bill file by Rep. John Scibak, would only allow electric shocks when the patient is exhibiting violent or self-abusive behavior, and it would mandate stricter supervision and reporting from those who administer shocks. The latter bill, filed by Rep. Barbara L'Italien, has been around for more than 20 years but has never gained traction.

Rotenberg Center founder and executive director Matthew Israel said even restricting the use of GEDs would hamstring staff and prevent adequate care.

"If this bill passed, I wouldn't be able to keep Brandon Sanchez alive," he said, blasting lawmakers who tried to frame the proposal as a compromise solution.

Patients must receive treatment even for warning signs of aggression, he continued, not just the aggression itself.

Israel explained that electric shock therapy is a last resort, employed only when positive reinforcement and other non-aversive measures fail. In addition, most patients at the JRC are taken off powerful medications also intended to stop aggressive behaviors but that can put patients in a non-responsive stupor. They are also freed from physical restraints, often used for hours a day to keep patients from harming themselves or others.

"If it weren't for the JRC, these students would go back to being restrained on the floor for hours," said Louise Goldberg, mother of a 26-year-old resident of the Rotenberg center. Without the JRC, Goldberg said, her son would have to go back to "drug-induced stupors and drooling."

But advocates for limiting and banning aversive therapy argued that using GEDs - which Israel described as feeling like a "two-second bee sting" while others who experienced it said was excruciatingly painful - on disabled children unable to speak for themselves is cruel.

Rep. Tom Sannicandro told the News Service that when an aversives ban was heard last session, he asked that he be administered a low-level GED shock, akin to what many of the Rotenberg students experience.

"I never realized how long two seconds could be," he said, comparing it to "if you ever stuck your finger in a socket."

"Barbaric," "criminal," and "wrong" were the words Senate President Therese Murray used to describe aversive therapy in testimony to the committee. Calling the bills "excellent," Murray said her years of experience as head of the now-defunct Human Services Committee led her to oppose painful therapies.

"Why would we punish children who are unable to care for themselves?" she posed.

Murray said some children had received electric shocks merely for "spitting in a Coke can."

"Why do we allow this?" she asked.

Murray's argument was punctuated by descriptions of an August incident at the JRC in which two residents were woken up in the middle of the night and shocked repeatedly - one 29 times and one 77 times - based on a prank call from someone pretending to be a supervisor.

When the identity of the caller was determined to be an outsider, JRC administrators suspended all employees involved and, after an investigation, fired them.

Since the incident, which Israel compares to the terrorist attacks of Sept. 11, 2001 - "I can only compare it to 9/11. Who would have ever thought?" - the JRC said it has overhauled its monitoring procedures and restricted phone calls that can come into the center.

"When it happened, we were shocked, saddened, horrified, embarrassed, humiliated. What could be worse than giving shocks to someone who doesn't deserve it?" Israel said.

But skeptical committee members questioned how the incident could have occurred in the first place.

The JRC is the only facility in the United States that regularly uses shock treatment to correct negative behaviors. Israel said other countries, including Canada, have similar institutions.

Videos of the Rotenberg incident, which were shown to investigators at the time, have since been erased, Israel said, prompting disbelief from some lawmakers, and even a comparison to the CIA, which is embroiled in its own video tape cover-up scandal.

Although Brandon Sanchez still suffers from some of the negative behavior that led to his placement in the Rotenberg school, another resident, Ed Berry, 28, said his electric shock therapy has been so successful, he will be leaving the JRC in a few months after a 10-year stint.

"I've been off the GEDs for three years now," Berry said, his voice quivering as he spoke. "I have an outside job, I have independence."

Berry said he was proud that he could now take the train by himself and that he got work as a cashier at Wal-Mart, goals he could never aspire to when he was on debilitating medication.

Aversive therapy is already banned in 10 states, including California, New Jersey, Florida, Connecticut and Rhode Island. Of the 213 residents at the JRC, 59 are from Massachusetts, while others come from New York, New Jersey, New Hampshire, Florida, Rhode Island and Ohio.

In support of the legislation, 644 Brandeis University students submitted a petition and letter to Gov. Deval Patrick, urging the governor to speak out against aversive therapy.

At the hearing, Jean McGuire, assistant Health and Human Service secretary for disability policies and programs, testified that the administration would conduct a review of policies and procedures related to aversive shock therapy and that it had recently completed an investigation into the "inappropriate use of contingent electric shock."

"The Executive Office of Health and Human Services is deeply cognizant of the significant challenges these families face," McGuire said.

Other attendees include a New York attorney, Kenneth Mollins, who opposes aversive therapy and represents a client who attended the JRC, as well as several parents of children at the JRC who came to oppose the legislation. Some former employees of the JRC came to support restrictions on aversive therapy as well.

Panel weighs restrictions on aversive therapy

Associated Press

BOSTON - A key legislative committee is weighing a bill to dramatically reduce the use of shock treatments on students at a controversial special education school. Senator Brian Joyce calls the treatment barbaric and says it should be limited to those who present a clear risk of injury to themselves or others.

Parents of children with severe disabilities say they oppose the restrictions. Eddie Sanchez says the treatment saved the life of his 31-year-old son who suffers from autism and mental retardation.