Harvard Grad's School Draws Strong Criticism

To some, it seems almost like a relic of the Cold War, when Harvard researchers conducted experiments with radiation on retarded children in Massachusetts.

But right now, a Harvard graduate is running a school for mentally retarded teenagers and adults that uses electric shocks to control their behavior.

Since 1971, the Behavior Research Institute (BRI) in Providence, Rhode Island, has served some of the most violent and self-abusive mentally retarded and autistic patients in the nation.

In recent months, BRI, which was created by Matthew L. Israel '54, has found itself under fire from the Massachusetts Department of Mental Retardation, advocates for the disabled and the Food and Drug Administration (FDA). It has also been the topic of a CBS special and the target of a bill in the state legislature designed to prevent aversive therapies.

Harvard is connected to BRI on several levels: its founder trained at

Harvard, its philosophy of treatment is basedon the ideas of Professor Emeritus B.F.Skinner and the son of a current professor is apatient.

As an undergraduate at Harvard, Israeltook a psychology course with Skinner. Hisexposure to Skinner's theories of behaviorism andto the idea that people can be made perfect wouldaffect him for the rest of his life.

Skinner, who taught at Harvard from 1947 to1974, believed people's behaviors fell into twotypes: voluntary, or "operant," and involuntary,or "reflexive." Through punishment and reward,Skinner believed people could learn to controltheir operant behaviors.

If one could devise a way to condition peopleto live harmoniously, Skinner believed a communalutopia could exist. Skinner, in fact, took this sofar as to raise his daughters in glass "Skinnerboxes."

After a brief stint at Harvard Law School,Israel earned his Ph.D. in Harvard's psychologydepartment. He later did his post-doctoral work atHarvard with Skinner.

When Israel founded the BRI in 1971, he appliedSkinner's ideas to the treatment of the mentallyhandicapped, creating an elaborate system ofrewards and punishments for patients there.

Those punishments, called "aversive therapy" or"aversives," have triggered one of the most heatedcontroversies ever about the care of the disabledand about what can be done in the name of medicaltreatment.

Opponents argue that aversives are equivalentto torture, that they do not work in the long termand that there are more effective, humanealternatives.

Proponents of BRI's program, including parentsof patients there, say BRI is saving people'slives.

The main aversive therapy BRI uses is electricshock, delivered by a device called the GraduatedElectronic Decelerator that 58 out of BRI's 62students wear on their bodies.

Students receive shocks to stop them frommutilating themselves or from hurting others,Israel says. The Boston branch of the FDA confirmsthat the electric shock is applied for thesepurposes. The FDA has been receiving informationfrom BRI on the use of electric shocks since 1991.

"There are individuals whose lives are at stakebecause of their behaviors," Israel says indefense of the treatment.

Israel tells stories of patients who came toBRI beating their heads against tables and walls,attacking others and forcing themselves to vomituntil they were nearly starved to death. Thesepatients were controlled else where only by heavydoses of mind-altering medications, he says.

"Unless you realize that this can belife-saving, it's easy to make aversive therapyseem like some kind of unusual treatment," Israelsays.

Most patients come to BRI as a lastresort, Israel says. New York regulations requirethat a student fail out of ten programs before heor she is eligible for BRI.

But BRI's critics dispute this. StephenSchwartz of the Center for Public Representation,which has represented parents in claims againstBRI, alleges that some patients have not failedany previous programs and could function well atother institutions.

In addition to its use of aversives, BRI has anelaborate plan of incentives.

Students who perform well are rewarded withvisits home, with trips to local restaurants orwith play money which they may spend at a schoolstore. And Israel says part of the school iscalled Hope Academy, where punishments andrestraints are not used.

According to Israel, the punishment-rewardsystem works to stop self-mutilating behaviorbecause patients who self-mutilate are seekingattention or expressing unhappiness with asituation.

When patients start to hurt themselves, peopleoutside BRI generally let them stop whateverprovoked the episode, Israel says. At mostschools, this phenomenon occurs when a studentgets out of doing lessons by reverting to aself-abusive behavior which makes the teacher stopclass.

"If you're willing to do just what the studentwants, you don't need to use aversives," Israelsays. But the student may not learn anything, headds.

Opponents of BRI's techniques have a slogan:"Pain teaches pain."

Israel dismisses this slogan. But Caryn S.Driscoll, director of the Quincy-based Amegoprogram that treats similar patients, says the useof pain can encourage self-abuse in some patients.

"Some enjoy the feeling--that's the hardest,"Driscoll says. "We try to determine why people areself-abusing."

Driscoll also says there are alternatives tousing aversives.

"You'll hear a lot that the only alternative toaversives is drugs," Driscoll says. "[But] goodprograms in the Commonwealth [of Massachusetts]don't use drugs as a treatment."

She says her program only uses drugs with sixof its 32 patients.

But Israel says all other programs useaversives--they just call them by different names.According to Israel, frequently-used aversivesinclude "take-downs," where staffers wrestleviolent patients to the floor, and "prompts,"where staffers cause patients to do something bygrabbing them forcefully.

But several experts raise questions about theefficacy and safety of the aversive therapy usedat BRI.

Driscoll criticizes Israel's development of aneven stronger electronic shock device called theGraduated Electronic Decelerator 4. While aboutfour BRI patients have been removed from thedecelerator, BRI says an equal number require thestronger device.

"Ten years ago, a spatula spank was gettingthings under control, and now they're using theGED 4," Driscoll says, "You wonder what comesnext."

Even Israel acknowledges that about ten percentof the patients at BRI have become habituated topain and require stronger aversives.

And questions remain as to whether severaldeaths at BRI were caused by the use of aversives.

In the summer of 1985, Vincent Milletichdied at BRI of a seizure while wearing a helmetthe institute had modified for aversive therapyuse.

Milletich's death coincided with the office forChildren's annual recertification of programs.Concerned that the death revealed problems withBRI, the children's office suspended BRI'slicense.

In probate court, BRI sued for the right toreinstitute its aversive treatments on anindividual basis. BRI also sued the children'soffice for acting maliciously in revoking theirlicense.

The case never went to trial. But, in asettlement, Judge Ernest Rotenburg found that thechildren's office had acted in bad faith. Thejudge also granted BRI a huge award of legal fees.

BRI was ultimately cleared of anyresponsibility in Milletich's death.

In a settlement between the children's office,the state attorney general and the institute, BRIwas placed first under the supervision of theDepartment of Mental Health and later, in 1987,under the control of its sister organization, theDepartment of Mental Retardation (DMR).

BRI has been licensed and regulated by DMR eversince, in what Kim E. Murdock, the mentalretardation department's general counsel, calls an"acrimonious" relationship.

During DMR's routine recertification of BRI inAugust 1993, the department found evidence ofpossible violations.

"In the process of certification, things cameto light that they hadn't been revealing to us,"Murdock says.

What DMR uncovered, according to Murdock, was afood-deprivation program and the use of mechanicalrestraints, both of which are prohibited underdepartment regulations.

Israel alleges that the state is victimizingBRI.

"We were certified [by DMR] for two years withno problems," Israel says. "They're leading acampaign of attrition against us."

According to Roderick MacLeish, Jr., counselfor BRI, the school is allowed to use mechanicalrestraints as long as they are approved by theprobate court in each individual's case.

MacLeish says that every restrictive oraversive therapy must be individually approved foreach patient in a court process where patients areevaluated by teams of psychiatrists, psychologistsand physicians.

DMR officials say they have always hadregulations prohibiting corporal punishment.

"We've had it on the books for 20 years,"Murdock says. "We're just asking them to complywith the law."

For now, the question of whether or not BRI canapply mechanical restraints has become ajurisdictional one. Does the institute answer tothe DMR or to the probate court?

In addition to its legal problems withthe state, BRI is now encountering difficultieswith the FDA over the use of its electric shockdevice.

BRI submitted a pre-market notification for theGraduated Electronic Decelerator in April 1991.Officials say they have continued to supply theFDA with information on the decelerator during thepast three years.

The pre-market notification allows medicalinvestigators to use a new device withoutsubmitting to the more intensive InvestigationalDevices Exemption process. In this way, devicesnot intended for sale quickly receive approval foruse under the pre-market approval category.

In January of this year, two state officescomplained to the FDA that Israel planned tomarket the decelerator. The offices also allegedthat the machine misfires and causes seriousburns.

The Boston office of the FDA investigated andfound no evidence of commercial distribution,misfirings or burns, according to a statementprovided by the FDA.

And in an interview, an FDA spokesperson saidBRI's cooperation with the agency has beencomplete and its documentation through.

But in a letter written March 1 and obtained byThe Crimson, the FDA requested additionalinformation about the decelerator and thestructure of the studies BRI is conducting.

According to this recent letter, the FDA hasdetermined "it is in the best interest of thepublic health that [BRI's] studies be conducted inaccordance with the full requirements of theInvestigational Device Exemptions regulation," asopposed to less thorough pre-market approvalprocess.

Parents of patients have been strenuousadvocates both for and against aversive therapy.Some have taken a public profile, testifyingduring state hearings on BRI and appearing onnational television.

Driscoll's program, Amego, uses a star pupilnamed Cory Genereux to show that abusive patientscan be treated without aversives or drugs.

Cory, the son of Sandra and Wesley Genereux ofSouth Easton, is autistic and has engaged in boutsof violence towards himself and others since hewas little.

Between the ages of 14 and 20, Cory was deniedadmission to 25 special needs programs becausethey deemed he was too difficult for theirfacilities.

And Cory was kicked out of three schools forinjuring staff and students. At one school, hisbehavior put a staffer in the hospital.

In another incident, Cory trapped his father inthe bathroom, pinned his mother to her bed and bither on the head while slowly twisting her neckaround. After that, the autistic 20-year-old wasaccepted at Amego.

Amego initially had to add extra exits to eachroom and escape routes from the building toaccommodate Cory. But only three years after beingadmitted, he has a part-time job in town, seldomabuses himself or others and returns home forvisits, Driscoll says.

At hearings last month on the Anti-AversiveBill proposed by Rep. David Cohen (D.-Newton),Sandra Genereux and Driscoll told Cory's story.Genereux pleaded for the end of painful aversivesand likened BRI's program to "torture in the DarkAges."

But for every Cory opponents can produce, BRIpresents a success story of its own.

Take the example of the autistic son of aHarvard professor. Before being admitted to BRI,the son used to put his hand down his throat andpull out pieces of his own esophagus, according toIsrael.

The professor and his wife both declined tocomment for this story and asked that their namesnot be used.

But their son--called "Brian" in an article inthe Cambridge TAB--has improved so much at theinstitute that the professor and his wife head acommittee called the BRI Parents and FriendsAssociation.

Members of the association testify on behalf ofBRI at state and court hearings on aversivetherapies. According to Israel, "Brian" no longerhurts himself and is well enough to return homefor unsupervised visits.

With all the conflicting testimony, aresolution to the controversy seems far-off. Bothsides claim that morality and science supporttheir cause, but the moral and scientific factsare unclear.

Israel acknowledge: "There are manywell-meaning people who believe you should neveruse aversive therapy."

And as long as the controversy rages, theembattled Dr. Israel will be unable to achieve hisideal--and Skinner's ideal--of a communal utopia

Harvard, its philosophy of treatment is basedon the ideas of Professor Emeritus B.F.Skinner and the son of a current professor is apatient.

As an undergraduate at Harvard, Israeltook a psychology course with Skinner. Hisexposure to Skinner's theories of behaviorism andto the idea that people can be made perfect wouldaffect him for the rest of his life.

Skinner, who taught at Harvard from 1947 to1974, believed people's behaviors fell into twotypes: voluntary, or "operant," and involuntary,or "reflexive." Through punishment and reward,Skinner believed people could learn to controltheir operant behaviors.

If one could devise a way to condition peopleto live harmoniously, Skinner believed a communalutopia could exist. Skinner, in fact, took this sofar as to raise his daughters in glass "Skinnerboxes."

After a brief stint at Harvard Law School,Israel earned his Ph.D. in Harvard's psychologydepartment. He later did his post-doctoral work atHarvard with Skinner.

When Israel founded the BRI in 1971, he appliedSkinner's ideas to the treatment of the mentallyhandicapped, creating an elaborate system ofrewards and punishments for patients there.

Those punishments, called "aversive therapy" or"aversives," have triggered one of the most heatedcontroversies ever about the care of the disabledand about what can be done in the name of medicaltreatment.

Opponents argue that aversives are equivalentto torture, that they do not work in the long termand that there are more effective, humanealternatives.

Proponents of BRI's program, including parentsof patients there, say BRI is saving people'slives.

The main aversive therapy BRI uses is electricshock, delivered by a device called the GraduatedElectronic Decelerator that 58 out of BRI's 62students wear on their bodies.

Students receive shocks to stop them frommutilating themselves or from hurting others,Israel says. The Boston branch of the FDA confirmsthat the electric shock is applied for thesepurposes. The FDA has been receiving informationfrom BRI on the use of electric shocks since 1991.

"There are individuals whose lives are at stakebecause of their behaviors," Israel says indefense of the treatment.

Israel tells stories of patients who came toBRI beating their heads against tables and walls,attacking others and forcing themselves to vomituntil they were nearly starved to death. Thesepatients were controlled else where only by heavydoses of mind-altering medications, he says.

"Unless you realize that this can belife-saving, it's easy to make aversive therapyseem like some kind of unusual treatment," Israelsays.

Most patients come to BRI as a lastresort, Israel says. New York regulations requirethat a student fail out of ten programs before heor she is eligible for BRI.

But BRI's critics dispute this. StephenSchwartz of the Center for Public Representation,which has represented parents in claims againstBRI, alleges that some patients have not failedany previous programs and could function well atother institutions.

In addition to its use of aversives, BRI has anelaborate plan of incentives.

Students who perform well are rewarded withvisits home, with trips to local restaurants orwith play money which they may spend at a schoolstore. And Israel says part of the school iscalled Hope Academy, where punishments andrestraints are not used.

According to Israel, the punishment-rewardsystem works to stop self-mutilating behaviorbecause patients who self-mutilate are seekingattention or expressing unhappiness with asituation.

When patients start to hurt themselves, peopleoutside BRI generally let them stop whateverprovoked the episode, Israel says. At mostschools, this phenomenon occurs when a studentgets out of doing lessons by reverting to aself-abusive behavior which makes the teacher stopclass.

"If you're willing to do just what the studentwants, you don't need to use aversives," Israelsays. But the student may not learn anything, headds.

Opponents of BRI's techniques have a slogan:"Pain teaches pain."

Israel dismisses this slogan. But Caryn S.Driscoll, director of the Quincy-based Amegoprogram that treats similar patients, says the useof pain can encourage self-abuse in some patients.

"Some enjoy the feeling--that's the hardest,"Driscoll says. "We try to determine why people areself-abusing."

Driscoll also says there are alternatives tousing aversives.

"You'll hear a lot that the only alternative toaversives is drugs," Driscoll says. "[But] goodprograms in the Commonwealth [of Massachusetts]don't use drugs as a treatment."

She says her program only uses drugs with sixof its 32 patients.

But Israel says all other programs useaversives--they just call them by different names.According to Israel, frequently-used aversivesinclude "take-downs," where staffers wrestleviolent patients to the floor, and "prompts,"where staffers cause patients to do something bygrabbing them forcefully.

But several experts raise questions about theefficacy and safety of the aversive therapy usedat BRI.

Driscoll criticizes Israel's development of aneven stronger electronic shock device called theGraduated Electronic Decelerator 4. While aboutfour BRI patients have been removed from thedecelerator, BRI says an equal number require thestronger device.

"Ten years ago, a spatula spank was gettingthings under control, and now they're using theGED 4," Driscoll says, "You wonder what comesnext."

Even Israel acknowledges that about ten percentof the patients at BRI have become habituated topain and require stronger aversives.

And questions remain as to whether severaldeaths at BRI were caused by the use of aversives.

In the summer of 1985, Vincent Milletichdied at BRI of a seizure while wearing a helmetthe institute had modified for aversive therapyuse.

Milletich's death coincided with the office forChildren's annual recertification of programs.Concerned that the death revealed problems withBRI, the children's office suspended BRI'slicense.

In probate court, BRI sued for the right toreinstitute its aversive treatments on anindividual basis. BRI also sued the children'soffice for acting maliciously in revoking theirlicense.

The case never went to trial. But, in asettlement, Judge Ernest Rotenburg found that thechildren's office had acted in bad faith. Thejudge also granted BRI a huge award of legal fees.

BRI was ultimately cleared of anyresponsibility in Milletich's death.

In a settlement between the children's office,the state attorney general and the institute, BRIwas placed first under the supervision of theDepartment of Mental Health and later, in 1987,under the control of its sister organization, theDepartment of Mental Retardation (DMR).

BRI has been licensed and regulated by DMR eversince, in what Kim E. Murdock, the mentalretardation department's general counsel, calls an"acrimonious" relationship.

During DMR's routine recertification of BRI inAugust 1993, the department found evidence ofpossible violations.

"In the process of certification, things cameto light that they hadn't been revealing to us,"Murdock says.

What DMR uncovered, according to Murdock, was afood-deprivation program and the use of mechanicalrestraints, both of which are prohibited underdepartment regulations.

Israel alleges that the state is victimizingBRI.

"We were certified [by DMR] for two years withno problems," Israel says. "They're leading acampaign of attrition against us."

According to Roderick MacLeish, Jr., counselfor BRI, the school is allowed to use mechanicalrestraints as long as they are approved by theprobate court in each individual's case.

MacLeish says that every restrictive oraversive therapy must be individually approved foreach patient in a court process where patients areevaluated by teams of psychiatrists, psychologistsand physicians.

DMR officials say they have always hadregulations prohibiting corporal punishment.

"We've had it on the books for 20 years,"Murdock says. "We're just asking them to complywith the law."

For now, the question of whether or not BRI canapply mechanical restraints has become ajurisdictional one. Does the institute answer tothe DMR or to the probate court?

In addition to its legal problems withthe state, BRI is now encountering difficultieswith the FDA over the use of its electric shockdevice.

BRI submitted a pre-market notification for theGraduated Electronic Decelerator in April 1991.Officials say they have continued to supply theFDA with information on the decelerator during thepast three years.

The pre-market notification allows medicalinvestigators to use a new device withoutsubmitting to the more intensive InvestigationalDevices Exemption process. In this way, devicesnot intended for sale quickly receive approval foruse under the pre-market approval category.

In January of this year, two state officescomplained to the FDA that Israel planned tomarket the decelerator. The offices also allegedthat the machine misfires and causes seriousburns.

The Boston office of the FDA investigated andfound no evidence of commercial distribution,misfirings or burns, according to a statementprovided by the FDA.

And in an interview, an FDA spokesperson saidBRI's cooperation with the agency has beencomplete and its documentation through.

But in a letter written March 1 and obtained byThe Crimson, the FDA requested additionalinformation about the decelerator and thestructure of the studies BRI is conducting.

According to this recent letter, the FDA hasdetermined "it is in the best interest of thepublic health that [BRI's] studies be conducted inaccordance with the full requirements of theInvestigational Device Exemptions regulation," asopposed to less thorough pre-market approvalprocess.

Parents of patients have been strenuousadvocates both for and against aversive therapy.Some have taken a public profile, testifyingduring state hearings on BRI and appearing onnational television.

Driscoll's program, Amego, uses a star pupilnamed Cory Genereux to show that abusive patientscan be treated without aversives or drugs.

Cory, the son of Sandra and Wesley Genereux ofSouth Easton, is autistic and has engaged in boutsof violence towards himself and others since hewas little.

Between the ages of 14 and 20, Cory was deniedadmission to 25 special needs programs becausethey deemed he was too difficult for theirfacilities.

And Cory was kicked out of three schools forinjuring staff and students. At one school, hisbehavior put a staffer in the hospital.

In another incident, Cory trapped his father inthe bathroom, pinned his mother to her bed and bither on the head while slowly twisting her neckaround. After that, the autistic 20-year-old wasaccepted at Amego.

Amego initially had to add extra exits to eachroom and escape routes from the building toaccommodate Cory. But only three years after beingadmitted, he has a part-time job in town, seldomabuses himself or others and returns home forvisits, Driscoll says.

At hearings last month on the Anti-AversiveBill proposed by Rep. David Cohen (D.-Newton),Sandra Genereux and Driscoll told Cory's story.Genereux pleaded for the end of painful aversivesand likened BRI's program to "torture in the DarkAges."

But for every Cory opponents can produce, BRIpresents a success story of its own.

Take the example of the autistic son of aHarvard professor. Before being admitted to BRI,the son used to put his hand down his throat andpull out pieces of his own esophagus, according toIsrael.

The professor and his wife both declined tocomment for this story and asked that their namesnot be used.

But their son--called "Brian" in an article inthe Cambridge TAB--has improved so much at theinstitute that the professor and his wife head acommittee called the BRI Parents and FriendsAssociation.

Members of the association testify on behalf ofBRI at state and court hearings on aversivetherapies. According to Israel, "Brian" no longerhurts himself and is well enough to return homefor unsupervised visits.

With all the conflicting testimony, aresolution to the controversy seems far-off. Bothsides claim that morality and science supporttheir cause, but the moral and scientific factsare unclear.

Israel acknowledge: "There are manywell-meaning people who believe you should neveruse aversive therapy."

And as long as the controversy rages, theembattled Dr. Israel will be unable to achieve hisideal--and Skinner's ideal--of a communal utopia