It’s become a wrenching but familiar sight for members of the Legislature: Brandon Sanchez - restrained by his uncle, Rep. Jeffrey Sanchez - writhing as he attempts to kick, claw and slap at his own face, the self-injurious consequence of a debilitating mental disorder.
In some ways, Brandon has become the poster-child for the Judge Rotenberg Center, a Canton-based institution that backers say is the only one in the country to apply skin shock therapy to the severely disabled, a method labeled by some lawmakers as "barbaric" and "torture" but supported by families of patients who say it’s their last resort.
Brandon, one of about 90 patients at the Rotenberg Center authorized to receive shock therapy, was back at the State House Tuesday, restrained in a bear hug by his uncle, as Rep. Sanchez (D-Jamaica Plain) testified before a committee of his colleagues that skin shock therapy has kept his nephew alive. As Sanchez spoke, Brandon moaned sporadically, occasionally breaking his hand free and landing a high-pitched slap on his own head.
"They could put him in a straight-jacket and lock him up in a padded cell so he doesn’t hurt himself and he doesn’t hurt other people. The other option, along with being locked up and restrained is drugging him up with anti-psychotic medicines," Rep. Sanchez said. "There’s no guarantee that it would keep him alive."
Rep. Sanchez’s testimony to the Committee on Children, Families and Persons with Disabilities came in opposition to four bills that would sharply curtail the use of "aversive therapy," such as skin shock treatment, or other remedies that involve applying a negative stimulus - spanking, pinching or pungent odors - to prevent violent or self-injurious behavior. Currently, courts must sanction aversive therapy treatments, supporters note.
Backers of the restrictions say science and treatments have advanced enough to show that positive reinforcements, medication and other therapies could replace aversive therapy in nearly all cases. The bills would also grandfather in those patients currently receiving aversive therapy, ensuring that Brandon and other patients at the JRC could continue their course of treatment.
Critics of the Rotenberg Center say it essentially practices a form of torture that is outlawed in many states and likely impermissible against suspected terrorists. Senate President Therese Murray has ripped the practice as "inhumane" and the Senate in May unanimously endorsed a sharp crackdown on the use of aversive therapy. The proposal was dropped during budget negotiations with the House.
Sen. Brian Joyce (D-Milton), whose district houses the Rotenberg Center, has emerged as its sharpest critic, calling its practices based on "pseudo-science" and calling the facility a "house of horrors" that reeks of "burnt flesh." During Tuesday’s hearing, Joyce recalled an incident several years ago in which a prank call to the JRC resulted in two patients getting shocked repeatedly, to the point that their skin burned and they required hospitalization. JRC officials called the incident a breach of protocol and said it was isolated. Earlier this year, the JRC’s former chief Matthew Israel resigned, following an indictment on charges that he obstructed an investigation into the facility’s practices.
Joyce also suggested that the JRC’s motivation is money, having raked in hundreds of millions of dollars over the last decade and shelling out millions on lobbyists, public relations officials and lawyers. Some of his constituents agree.
"I’m tired of being called a citizen of the town of the Guantanamo Bay Prison for children," said Alice Brown, a Canton resident, who said her grandson’s attention deficit hyperactivity disorder is treated with medication. She called aversive therapy a "beautiful pseudonym for torture."
Rep. Thomas Sannicandro (D-Ashland) testified in support of his bill (H 77) that would ban all aversive therapy in Massachusetts, arguing that alternative treatments are more effective. Several years ago, Sannicandro asked JRC officials to shock him at the lowest level administered to patients. He described the pain as "unbearable."
But supporters of the JRC say critics are seeking to deprive families of what could be the most appropriate form of treatment for their loved ones - often the only alternative to mind-altering antipsychotic drugs or straitjackets and padded walls.
Robert Von Heyn, the director of clinical services at the JRN, testified that many of Joyce’s allegations were "totally false." He said no one at the facility had been "hospitalized for burnt flesh" and that those applying skin shocks are well-trained.
"The UN has not found what we do as torture," Von Heyn said, rejecting an assertion made by critics of the facility.
"Individuals on GED [graduated electronic decelerator] never require emergency restraint," he said. "While we’re helping them, we don’t want GED clients to come to us. The majority of them we don’t want to use it. But there are those few."
Von Heyn said about 90 residents of the JRC are eligible for skin shocks although many have been "weaned off."
Supporters of the facility are facing a new front in their efforts to preserve skin shock therapy as an option for future patients. The Patrick administration moved this month to unilaterally ban aversive therapy for prospective patients.
Secretary of Health and Human Services JudyAnn Bigby testified Tuesday that the move came as a result of the "rise in positive behavioral supports," often obviating the need for painful aversive therapy. She cited the support of a slew of national disability advocates for restrictions on aversive therapy, including The Arc.
"We feel that we’ve looked at those processes and have helped to make them work as well as we can," Bigby told reporters after testifying before the committee, "but that since the evidence shows that this type of treatment really does not meet the standard of the state of the art right now that it’s much more important for us to propose this regulation to eliminate these treatments going forward because there is, as I said, evidence that other types of interventions are effective and safer and more humane."
Health and human services officials anticipate final regulations to be issued in about a month.