The Justice

[For an easier-to-read, fully-formatted version of this reply, in which you will be able to use the links included there to go immediatetly to full text versions of each reference that is given in the below document, please go to http://www.judgerc.org/ResponsetoRobinson.pdf]

Nathan Robinson?s OpEd statement confirms the statement I made in my own OpEd piece: certain persons, including him, are unwilling to weigh the risks/costs/intrusiveness of rewards/skin shock therapy against its benefits -- even, apparently, if it would save lives (it has) or keep a child from going blind (it has).

Please allow me to correct some facts in Mr. Robinson?s OpEd piece:

1. He says that he read the New York State Department of Education?s damning 2006 report about JRC. His research apparently, however, did not include reading our response to that report which is at http://www.judgerc.org/ReplytoJuneReport.pdf. Just because a state agency report says something (particularly the report of an agency that is conducting a campaign to forbid parents from obtaining reward/aversive therapy at JRC) does not necessarily make it true.

2. He states that ?Modern psychological science has long since moved past the idea that corporal punishment is ever necessary....? There is a big difference between corporal punishment and the careful, professionally-supervised application of behavior modification treatment that includes rewards/aversives. For a comprehensive review of the psychological literature on the use of positive-only treatment that shows that it is effective in only 50% of the cases, see http://www.judgerc.org/PositiveBehaviorSupport.pdf. For evidence that positive-only treatment does not work with severe behavior disorders, see http://www.judgerc.org/SevereAggressive.pdf. For proof that when positive-only treatment programs encounter difficult-to-treat students they expel them and the students are often then referred to JRC for effective treatment, please see http://www.judgerc.org/posonlyprograms.pdf

3. It is true that a number of disability groups oppose the use of rewards/aversives on philosophical grounds. I have heard persons from the Massachusetts Civil Liberties Union, for example, say things like, ?If a child wants to bang his head against the wall, that is his right to do so!? But what about the parents of special needs children with life-threatening self-abuse and aggression whose children have been expelled from programs that are unable or unwilling to use rewards/aversives? Please read a few letters from these parents at http://www.judgerc.org/parentletters.html.

For position papers of professional and advocacy organizations which have issued statements supporting the parent?s right to choose the form of treatment that will be best for his/her special needs child, please see the following: http://www.judgerc.org/TheTreatmentofSelf-InjuriousBehavior.pdf (Association for Behavioral and Cognitive Therapies); http://www.judgerc.org/TheRighttoEffectiveBehavioralTreatment.pdf (Association for Behavior Analysis); http://www.judgerc.org/GuidelinesforEffectiveBehavioralTreatment.pdf (Division 33 of the American Psychological Association; and http://www.autism-society.org/site/PageServer?pagename=optionspolicy (Autism Society of America).

4. Mr. Robinson mentions two students who died while in the care of JRC. They died of natural causes, having nothing to do with the reward/aversive therapy that they were receiving at JRC. JRC has a near-zero rejection policy which means that it accepts students with pre-existing medical conditions that may shorten the child?s expected life-span. All large treatment facilities for the severely disabled experience deaths, especially facilities like JRC that have been in operation for over 35 years and that treat the most fragile and dangerous population. JRC actually has experienced very few deaths, all of which were investigated by the proper state authorities, and none of which were found to be caused by JRC?s treatment program.

5. The use of reward/skin shock treatment is one of the most widely reported-on behavioral procedure in the psychological literature. Our bibliography (see http://www.judgerc.org/aversivesbib.html) counts over 110 articles on its use. None of them, which go back for about 42 years have ever reported ?deep-rooted psychological trauma down the road?? The fact is that skin-shock used at JRC (which involves applying a shock to the surface of the skin, typically of the arm or leg, for a two-second period, where its frequency of use is only once per week on average) has no significant adverse side effects, either short-or long-term.

6. Mr. Robinson implies that our treatment involves ?exclusive reliance on jolts of electricity instead of behavioral education.? Until I read that, I had given him the benefit of the doubt that he had been reading our web site. If he had really reviewed our web site, he would have learned that we employ innovative, state-of-the-art, and comprehensive reward and behavioral education systems, many of which are found in no other program. See
http://www.judgerc.org/Key_Features/positive_programming.html and see
http://www.judgerc.org/Key_Features/education.html

7. Mr. Robinson incorrectly suggests that JRC believes a parent should determine whether reward/aversive therapy is used with a child. We do not. The decision is made by a Probate Court Judge on an individualized ?substituted judgment? basis after a hearing in which the student?s interests (as distinct from that of his/her parents) are represented by a court-appointed separate attorney that is paid for the Commonwealth of Massachusetts. That attorney hires a psychologist, at state expense, to advise him. The Probate Court judge then receives quarterly reports and reviews the student?s progress and treatment every six months. Although the basic decision is made by a judge, JRC also requires that the parent give his/her approval in addition to the court approval. The parent can withdraw his/her approval at any time.

8. Mr. Robinson incorrectly assets that Probate Court judges do not have legal authority to authorize the rewards/aversives treatment. In Massachusetts, intrusive treatment is approved by the Probate Court in a two step substituted judgment process. In the first step, the judge decides whether the individual is competent to make his/her own medical decisions. If not, then the judge decides what the individual would have chosen if he/she were competent to make a decision.

9. Regarding the skin-shock device that we use, it was designed by an electrical engineer and was modeled after a device (?SIBIS?) that has numerous peer-reviewed papers reporting on its effectiveness. See http://www.effectivetreatment.org/bibliography.htm#SIBISbib . When registering a device with the FDA (the GED is so registered) one must present evidence of safety and effectiveness.

10. There is no ?lack of trained psychologists at JRC.? JRC employs 14 clinicians, 11 of whom doctoral degrees in psychology. Seven of those eleven are licensed psychologists. Three clinicians have masters degrees in psychology. Four clinicians are Board Certified Behavior Analysts and three more are in process of becoming so certified.

11. There is no ?refusal to administer medication? at JRC. We currently have approximately 26 students at JRC who are receiving psychotropic medication. We do try to reduce or eliminate the use of psychotropic medication and that is a very desirable policy.

12. Mr. Robinson characterizes JRC as an ?extremely secretive?environment.? How secretive can we be if our web site has given him all the ammunition he needs to oppose JRC, and if we have extended an invitation (in my OpEd article of October 9) to the Brandeis anti-JRC club members to visit us?

I note that Mr. Robinson accuses JRC of avoiding the issue of ?whether it's morally acceptable to administer painful electric shocks to handicapped children; children with mental retardation, autism and depression.? Suppose that an autistic child is banging her head against walls and floors and is in danger of brain damage, or is refusing food to the point of starvation, or is poking at her eyes so forcefully with her fist that she has detached her retinas and is in danger of blinding herself. Suppose, also, that all of the positive reward and educational procedures have been tried and have failed to adequately control these self-abusive behaviors. And suppose that psychotropic drugs have also been tried and have failed. These are all real cases that have been brought to JRC?s door.

Now suppose that we can stop the head banging, eye-poking or food-refusing through the application of a scientifically-approved behavior modification treatment that involves adding, to the ongoing rewards-and-education program, a two second application of shock to the surface of the skin of the arm or leg that has these characteristics: it has no harmful side effects, either or short or long-term; it causes the student to be more relaxed and happy and enables her to start learning new skills because her repertoire is no longer completely filled with self-abusive behaviors; it is required only once per week on the average; and it is so effective that in some cases the student may be able to graduate from its use entirely.

Which is the morally acceptable course: (1) allow the student to cause brain injury, blindness or starvation, but be in keeping with political correctness among certain advocacy agencies who are unwilling to weigh risks against benefits when aversives are involved; or (2) save the student from brain damage, blindness or death by providing a new, but politically unpopular form of reward/aversive treatment?

A further point. Mr. Robinson says the issue is "whether it's morally acceptable to administer painful electric shocks to handicapped children; children with mental retardation, autism and depression." At JRC reward/skin shock treatment is never used to treat depression. The assumption in the quoted material that it is so used makes me worry whether Mr. Robinson has confused skin-shock with electro-convusive shock. The latter is psychiatric procedure, done in a hospital with the patient often being drugged. The procedure involves passing a current of electricity through the brain to deliberately cause seizures. It is sometimes used to treat depression. I have explained the difference between the two procedures at http://www.judgerc.org/faqs.html#soundsbarbaric I don't know of a single study in which behavioral skin-schock has been used to treat depression and it is never used for that purpose at JRC.

Reward/skin-shock therapy is also never administered to someone simply because he or she is "handicapped" or has "mental retardation" or "autism." Instead, it is used to treat specific harmful behaviors that special needs children –regardless of diagnosis-- may show and which cannot be treated successfully by any other means.

Dear Mr. Israel,

I would first like to thank you for taking interest in our group. It is encouraging to know that word is getting out about our cause!

Let me get to the point: no matter how much evidence I am presented with regarding the legitimacy of aversive therapy, whether psychological or legal, I still cannot- from a purely moral/ethical standpoint-support the use of aversive treatments. Would you allow a parent to beat a child, whatever positive benefits they may claim? Why is it okay for parents to allow pain to be inflicted, but cannot do it themselves? This legal double-standard is appalling to me.

More important than the temporary behavior of these kids is their long-term abililty to function in society. At your center, some students remain wired to the GED into adulthood. This contradicts your claim that aversive treatment allows disabled people an independent lifestyle. I am even more disturbed by the concept of the GED-4. Some students become immune to the pain of the GED and revert to former behaviors, and you handle this by attaching them to a more painful device. Progressing from one shock device to another is not the independent lifestyle that your center works towards.

Lastly, we are not alone in our dissent. Disability rights associations across the country oppose aversive treatments at the JRC. There is movement in the Massachusetts state house to outlaw extreme forms of punishment, such as H109, sponsored by Barbara L'Italien. New York attorney Ken Mollins is representing plaintifs in four lawsuits involving your center, and adamantely opposes aversive treatments. Students at Brandeis are horrified by practices at the JRC, and are now mobilizing. Your center is quickly becoming quite politically unpopular, and so will politicians who support it.

Thank you again for your responses.

Sincerely,
Liza Behrendt
lizaveta@brandeis.edu

I had a feeling Matthew Israel would issue a long, point-by-point response to my article. He tends to do this whenever anybody dares to question the JRC or its methods. I did not wish to have to respond to one of these attacks. But I feel obligated to defend myself, and to offer a justification for why I said what I said. It is a shame that what should be a reasoned, enlightened debate, has devolved into a bitter back-and-forth. I suppose I bear some of the responsibility for that myself. But I cannot walk away from this now, and let Matthew Israel?s ?rebuttal? be the last word on this issue. So let me go through point by point.

Nathan Robinson?s OpEd statement confirms the statement I made in my own OpEd piece: certain persons, including him, are unwilling to weigh the risks/costs/intrusiveness of rewards/skin shock therapy against its benefits -- even, apparently, if it would save lives (it has) or keep a child from going blind (it has).

This is a Machiavellian ?ends justify the means? argument, the only type of argument that can possibly be employed in defending this type of treatment. If this argument is to be accepted, it opens up the door for all kinds of other similar horrors. If beatings could change behavior (they have) would they be justified? If we could create a way to inflict horrible pain without leaving a mark, and it successfully modified behavior, would we be justified in using it? What limits are there? Where is the line drawn? To accept aversive treatment is to accept the idea that as long as a treatment works, it is acceptable.

Please allow me to correct some facts in Mr. Robinson?s OpEd piece:

Let me preface my response to these points by saying firstly that, as I am a college student preparing for mid-terms, I do not have as much time as I would like to go in-depth in my counterpoints. Secondly, the vast majority of these are not ?fact corrections? so much as argumentative disputes. Dr. Israel would like to portray himself as the one with truth and evidence on his side. Our side?s argument is based on emotion, his on reason. This couldn?t be further from the truth, as I hope to demonstrate.

1. He says that he read the New York State Department of Education?s damning 2006 report about JRC. His research apparently, however, did not include reading our response to that report which is at http://www.judgerc.org/ReplytoJuneReport.pdf. Just because a state agency report says something (particularly the report of an agency that is conducting a campaign to forbid parents from obtaining reward/aversive therapy at JRC) does not necessarily make it true.

We did read the response to the report beforehand, and while, since I don?t have a direct window into the operations of the Judge Rotenberg Center, I cannot pretend to decide whether Israel or the State of New York won that particular round of ?he-said, she-said? bickering, I do find it strange that Israel tries to portray an unbiased government agency, whose only purpose in conducting the report is accountability, as some sort of vindictive witch-hunt. I, for one, trust a non-partisan government investigation over the words of the very organization that is being investigated. In regard to Dr. Israel?s extremely lengthy response to the NYSDE report, however, we find it to be extremely flimsy. In it, the JRC justifies administering shock to students who nag, swear, or ?begin to disrobe in public.? These are not, in themselves, violent behaviors, and Israel?s horror stories about students cutting themselves and putting out their own eyes hide the fact that these are only the most extreme of examples, and that in many cases, very minor behaviors are considered shock-worthy.

2. He states that ?Modern psychological science has long since moved past the idea that corporal punishment is ever necessary....? There is a big difference between corporal punishment and the careful, professionally-supervised application of behavior modification treatment that includes rewards/aversives. For a comprehensive review of the psychological literature on the use of positive-only treatment that shows that it is effective in only 50% of the cases, see http://www.judgerc.org/PositiveBehaviorSupport.pdf. For evidence that positive-only treatment does not work with severe behavior disorders, see http://www.judgerc.org/SevereAggressive.pdf. For proof that when positive-only treatment programs encounter difficult-to-treat students they expel them and the students are often then referred to JRC for effective treatment, please see http://www.judgerc.org/posonlyprograms.pdf

Corporal punishment, however carefully administered and ?professionally supervised? (it is worth noting that doctors are not the ones pushing the buttons on the GEDs), is still corporal punishment. In case Dr. Israel has forgotten the actual definition of corporal punishment, it is this: infliction of physical pain upon a person's body as punishment for an infraction. The use of electric shock devices at the JRC certainly fits perfectly into this definition, despite Dr. Israel?s efforts to pretend otherwise.

Once again, I would like to state that the main issue is a moral one. If this works (it may well, since if I were shocked every time I did something wrong, I?d learn my place pretty quickly), it does not automatically justify its use. Effectiveness is not a moral argument.

Furthermore, despite Israel?s literature (all from his own website), he is grasping at straws. Although he can drag out a few leftover behaviorists to back him up, Israel never pretends that he?s not in the minority as far as psychological science goes. He admits that his treatment is not ?politically correct,? whatever that is supposed to mean. I never said that there weren?t studies confirming the effectiveness of aversives. I said that firstly, they were wrong, and secondly, the majority of the psychological community (and those who work with the disabled) have moved past them. Israel?s treatment is the only one of its kind in the country. Aversive therapy is even banned in several states. Clearly, it?s extremely unpopular. If it were as accepted as Israel likes to delude himself into thinking it is, surely the Judge Rotenberg Center wouldn?t be the only ones shocking children into conforming.

3. It is true that a number of disability groups oppose the use of rewards/aversives on philosophical grounds. I have heard persons from the Massachusetts Civil Liberties Union, for example, say things like, ?If a child wants to bang his head against the wall, that is his right to do so!? But what about the parents of special needs children with life-threatening self-abuse and aggression whose children have been expelled from programs that are unable or unwilling to use rewards/aversives? Please read a few letters from these parents at http://www.judgerc.org/parentletters.html.

For position papers of professional and advocacy organizations which have issued statements supporting the parent?s right to choose the form of treatment that will be best for his/her special needs child, please see the following: http://www.judgerc.org/TheTreatmentofSelf-InjuriousBehavior.pdf (Association for Behavioral and Cognitive Therapies); http://www.judgerc.org/TheRighttoEffectiveBehavioralTreatment.pdf (Association for Behavior Analysis); http://www.judgerc.org/GuidelinesforEffectiveBehavioralTreatment.pdf (Division 33 of the American Psychological Association; and http://www.autism-society.org/site/PageServer?pagename=optionspolicy (Autism Society of America).

Here, Dr. Israel attempts to dismiss the opposition of numerous disability rights groups (20 in Massachusetts alone) with an un-sourced and clearly out-of-context quote, and through (as I predicted) bringing out his useful set of glowing testimonials. I notice that he doesn?t address, even in the slightest, the disability groups themselves, nor does he answer the question I had in my initial article. What does Dr. Israel know that these groups don?t?

4. Mr. Robinson mentions two students who died while in the care of JRC. They died of natural causes, having nothing to do with the reward/aversive therapy that they were receiving at JRC. JRC has a near-zero rejection policy which means that it accepts students with pre-existing medical conditions that may shorten the child?s expected life-span. All large treatment facilities for the severely disabled experience deaths, especially facilities like JRC that have been in operation for over 35 years and that treat the most fragile and dangerous population. JRC actually has experienced very few deaths, all of which were investigated by the proper state authorities, and none of which were found to be caused by JRC?s treatment program.

I mentioned questionable circumstances, which there certainly were in these examples. Read the Mother Jones article to see for yourself, though, of course, our central argument stands without the MJ article.

5. The use of reward/skin shock treatment is one of the most widely reported-on behavioral procedure in the psychological literature. Our bibliography (see http://www.judgerc.org/aversivesbib.html) counts over 110 articles on its use. None of them, which go back for about 42 years have ever reported ?deep-rooted psychological trauma down the road?? The fact is that skin-shock used at JRC (which involves applying a shock to the surface of the skin, typically of the arm or leg, for a two-second period, where its frequency of use is only once per week on average) has no significant adverse side effects, either short-or long-term.

6. Mr. Robinson implies that our treatment involves ?exclusive reliance on jolts of electricity instead of behavioral education.? Until I read that, I had given him the benefit of the doubt that he had been reading our web site. If he had really reviewed our web site, he would have learned that we employ innovative, state-of-the-art, and comprehensive reward and behavioral education systems, many of which are found in no other program. See
http://www.judgerc.org/Key_Features/positive_programming.html and see
http://www.judgerc.org/Key_Features/education.html

I know full well that other treatments are used, but they are not what the issue is about. If the JRC were to remove its electric shock component and rely solely on its other methods, we would have no issues with it. But, in the event, these electric shocks are being used on plenty of children, and this is what we wish to debate. I only talk about the electric shocks because they are the entire subject of this discussion. I?m not here to debate whether children should have access to rewards, because I agree with that part of the JRC?s program. I?m here to debate whether they should have electric punishments, because that is the part I take exception to.

7. Mr. Robinson incorrectly suggests that JRC believes a parent should determine whether reward/aversive therapy is used with a child. We do not. The decision is made by a Probate Court Judge on an individualized ?substituted judgment? basis after a hearing in which the student?s interests (as distinct from that of his/her parents) are represented by a court-appointed separate attorney that is paid for the Commonwealth of Massachusetts. That attorney hires a psychologist, at state expense, to advise him. The Probate Court judge then receives quarterly reports and reviews the student?s progress and treatment every six months. Although the basic decision is made by a judge, JRC also requires that the parent give his/her approval in addition to the court approval. The parent can withdraw his/her approval at any time.

Once again, the Pope, the President, and the Prime Minister could give their approval for the use of this treatment, for all that it matters. These entities do not have moral authority over the fundamental dignity of children. The titles held by the people making these decisions are utterly irrelevant, because the decision is not theirs to make. An individual, no matter who they are, cannot violate another?s natural rights in this country. And we believe that the right not to have horrific pain forcibly inflicted on an individual is just as important as any other right.

8. Mr. Robinson incorrectly assets that Probate Court judges do not have legal authority to authorize the rewards/aversives treatment. In Massachusetts, intrusive treatment is approved by the Probate Court in a two step substituted judgment process. In the first step, the judge decides whether the individual is competent to make his/her own medical decisions. If not, then the judge decides what the individual would have chosen if he/she were competent to make a decision.

I was referring not to the rubber-stamping of the children?s electric-shock treatment by the courts, which I acknowledge. Despite loopholes in the current law that have allowed it to happen, judges do not have the legal authority to authorize cruel and unusual punishment, which is exactly what this electric-shock treatment is. Furthermore, there is a higher moral law at stake here. Each of us has unalienable basic rights, simple human dignities, that cannot be overridden by parents or judges. A parent and a judge could authorize any number of things, but it does not make an action moral, and it certainly doesn?t mean that an action

9. Regarding the skin-shock device that we use, it was designed by an electrical engineer and was modeled after a device (?SIBIS?) that has numerous peer-reviewed papers reporting on its effectiveness. See http://www.effectivetreatment.org/bibliography.htm#SIBISbib . When registering a device with the FDA (the GED is so registered) one must present evidence of safety and effectiveness.

The Food & Drug Administration has not actually approved the device, however, has it? It hasn?t undergone any testing by the FDA itself. Furthermore, the GED device is ?based on? a device that has been peer reviewed, but Israel presents no evidence that it has been peer reviewed itself. With something clearly so controversial and potentially dangerous, one would expect at least some accountability. Effectivetreatment.org, which is another site run by Israel (it?s interesting that every bit of evidence he presents comes directly from his own website) cites peer-reviews of skin-shock effectiveness (once again, effectiveness is not the central issue), and of this ?SIBIS? device, but none of the actual GED. So this device itself hasn?t been peer-reviewed. If it had, I?m sure we?d have a PDF on it by now. What this means is that the only person holding Matthew Israel responsible for his device is?Matthew Israel. Who is testing the GED, apart from those affiliated with the Rotenberg Center? Who is making sure it is used fairly in every case (apart from committees set up by the Center)? What scientific bodies have actually checked out the GED? The research Israel presents, while it covers many, many pages, is flimsy at best.

10. There is no lack of trained psychologists at JRC.? JRC employs 14 clinicians, 11 of whom doctoral degrees in psychology. Seven of those eleven are licensed psychologists. Three clinicians have masters degrees in psychology. Four clinicians are Board Certified Behavior Analysts and three more are in process of becoming so certified.

This information contradicts a number of published sources, and, once again, we only have Israel?s word to support it. It is, in many cases, difficult for me to argue with Matthew Israel, not because he is right, but because he has far more access than I do to the JRC. Nevertheless, I would ask for a bit of clarification. Does he mean that there are 14 people involved in the direct care of the children? Are all of the people in charge of shocking children medical doctors? Does anyone without a degree in psychology ever have discretion over when a child is shocked? Are these 14 clinicians the teachers of the students? If so, with several hundred students and 14 clinicians, how much one-on-one time can the average possible child get? The skimpy response Israel has offered invited myriad questions. However, I?m not going to get deeply into this issue, because it, like so many others, distracts us from the central moral question.

11. There is no refusal to administer medication at JRC. We currently have approximately 26 students at JRC who are receiving psychotropic medication. We do try to reduce or eliminate the use of psychotropic medication and that is a very desirable policy.

Dr. Israel loves to use the scary word ?psychotropic? every time he mentions medication. It conjures up images of extreme brain modification, of L.S.D., of hallucinations and fright. It has a negative connotation in today?s world. But let?s look at the definition of the word. Psychotropic simply means ?having an altering effect on perception, emotion, or behavior.? So, why, exactly, is all medication that affects behavior bad? Certainly it can be if over-used or poorly applied, but the use of medication in itself is not explicitly harmful, and the fact that 90% of students at the JRC are on no medication whatsoever is extremely frightening. Behavior problems stem, at their root, from brain chemistry, and by using physical pain instead of medication that actually fixes the neurological problems that cause the behavior, the JRC only scratches the surface of these children?s disorders. The disorders are still there when the JRC is finished, they?re just covered in a layer of fear. Eliminating medication as a whole is in no way a desirable policy, and Israel?s instant condemnation of any and all medication (no matter what its actual effects are), shows just how simplistic the practices of the center are. If Israel views all medication as a negative force, has he really explored all avenues? That?s an important question, because a core part of the pro-JRC argument is that the center stands as a ?last resort? for desperate parents. The children at the center are the ones for which ?nothing else works.? But how can we possibly know nothing else works if we instantly assume medication is a negative? It seems to me like that sort of attitude would cause an instant leap to electric shocks, and an unwillingness to experiment.

12. Mr. Robinson characterizes JRC as an extremely secretive environment. How secretive can we be if our web site has given him all the ammunition he needs to oppose JRC, and if we have extended an invitation (in my OpEd article of October 9) to the Brandeis anti-JRC club members to visit us?

As Dr. Israel is no doubt aware, we had received no such invitation when I wrote those words (my article also appeared on October 9th!). But let me clarify what I meant. I wished to imply that the center has very little outside accountability, and seems to operate entirely free of oversight. When the NYSDE conducted what seems to be the first comprehensive outside report about the center, it was viciously attacked by Israel and the Center. For such a controversial treatment program (the only one of its kind in the nation), one would expect major investigation. With the horrifying reports that have come from those who have visited the center (Jennifer Gonnerman, the NYSDE, Ken Mollins), it would seem logical for there to be mass exposure about the center. If electric shocks are being used on children, it should be a matter of public record every single time a child is shocked, and what their specific offense was.


I note that Mr. Robinson accuses JRC of avoiding the issue of ?whether it's morally acceptable to administer painful electric shocks to handicapped children; children with mental retardation, autism and depression.? Suppose that an autistic child is banging her head against walls and floors and is in danger of brain damage, or is refusing food to the point of starvation, or is poking at her eyes so forcefully with her fist that she has detached her retinas and is in danger of blinding herself. Suppose, also, that all of the positive reward and educational procedures have been tried and have failed to adequately control these self-abusive behaviors. And suppose that psychotropic drugs have also been tried and have failed. These are all real cases that have been brought to JRC?s door.

Firstly, these horror stories are the minority, the ones that Israel drags out in order to justify a shocking in a large number of cases in which there was not such extreme self-harm involved. Secondly, the fact that a behavior is severe does not warrant the logical link to the use of electric shocks. Strapping a GED device to a child is not the obvious solution to violence. Israel, however, ignores all other possible solutions (seeing medication as only an occasional necessary evil, rather than an effective treatment, and refusing to consider the many possibilities that modern medicine presents us with). Because Israel refuses to acknowledge alternatives to radical behaviorism, he views his treatment as the only answer. I have talked to psychologists, who have informed me that there are plenty of available options in the case of severely violent children, including, but not limited to, a wide variety of safe, effective medications. I am of, course, at a disadvantage here, because I am not a psychologist. However, I am a person who can recognize a fundamental affront to human dignity, and the use of electric shocks on children is such an affront.

The examples Israel cites are intended to alarm us into considering letting the ends justify the means. In his Justice article he cites examples such as ?cutting off their own earlobes with scissors; swallowing X-acto knives; and cutting their skin.? Perhaps in these cases it would be wise to deny children access to X-acto knives and scissors. Perhaps, in other cases, restraint is in order, followed by careful rehabilitation through a combination of positive rewards, lengthy one-on-one counseling, and medications which can either cure the behavior or at least calm and relax the child. I am not a psychologist, but I have consulted them, and there are a slew of alternative treatments that can be used. Electric shocks are not only never a morally acceptable option, they are also never a necessary option.

Now suppose that we can stop the head banging, eye-poking or food-refusing through the application of a scientifically-approved behavior modification treatment that involves adding, to the ongoing rewards-and-education program, a two second application of shock to the surface of the skin of the arm or leg that has these characteristics: it has no harmful side effects, either or short or long-term; it causes the student to be more relaxed and happy and enables her to start learning new skills because her repertoire is no longer completely filled with self-abusive behaviors; it is required only once per week on the average; and it is so effective that in some cases the student may be able to graduate from its use entirely.

I find Israel?s use of the phrase ?harmful side-effects? curious. Israel believes that his shock does no harm to children, but evidently does not consider pain to be ?harm.? If it doesn?t leave a mark, it must be harmless. Secondly, Israel does not consider the point I made in my article. Why is the behavior changed when the skin-shock is applied? Because the child is afraid of receiving another skin-shock. So the behavior modification is based on fear of a consequence. Is a permanent state of fear not a ?harmful side-effect?? Is living your life knowing that if you put a toe out of line, a shock awaits you, completely harmless? It would take extreme na?vet? in order to think otherwise.

Which is the morally acceptable course: (1) allow the student to cause brain injury, blindness or starvation, but be in keeping with political correctness among certain advocacy agencies who are unwilling to weigh risks against benefits when aversives are involved; or (2) save the student from brain damage, blindness or death by providing a new, but politically unpopular form of reward/aversive treatment?

This is a logical fallacy we tend to call a ?false alternative.? Our options here are not blindness, starvation, and injury versus safe, effective treatment. If it was, we wouldn?t be having this argument. The issue is whether if administering pain can fix behavior, it is justified. And I feel that it is not, for as long as there are less painful treatments available (and there are), there is no cause for inflicting cruel and unusual punishment. Israel?s perpetual, extreme defensive attitude certainly indicates that he doesn?t even consider other possibilities of treatment. He instantly lashes out at any critic of his program, whether it be the well-respected Mother Jones magazine, or the New York State Department of Education (an agency whose only goal is to serve the children of the state as best it can). Certainly, this contrasts sharply with the attitude of our group. We waded through the sea of information about the JRC that exists on the internet (including the massive, repetitive, hyper-defensive PDFs scattered around the JRC?s site), and made sure we knew all of the facts before we decided on a position. We considered Israel?s take on things. But it just doesn?t hold up. Even though APA guidelines clearly state that aversive therapy is only to be used in life-threatening cases, Israel admits that it is sometimes used in cases of nagging or swearing (despite his citation of the APA in order to prove the acceptability of aversives). Frankly, Israel?s arguments don?t hold up. Although he issues pages and pages of refutation in response to any attempt to criticize him, close analysis reveals it to be sketchy and weak. Please, don?t buy into Dr. Israel?s propaganda. What is going on at the JRC is an insult to our natural rights as human beings, and it must be stopped. There is no excuse for giving electric shocks to children. None. The ends do not justify the means. We are a society of rights and dignities, and we must preserve those, especially in our most vulnerable citizens.

Oh, by the way, you can view a properly-formatted version (with all Israel's quotes in italics, to alleviate confusion) on my website, located here:

http://www.monocleandtophat.com/israelresponse.doc

I'd just like to show my support for Nathan and Liza and the Students Against the JRC by adding my own two cents:
Dr. Israel,
One of the major issues brought up in our meetings was that of the faculty at the Center. You say that your "behavior modification treatment" is "professionally supervised" and also that the Center employs a number of licensed psychologists and doctors in psychology, &c. However, as Nathan alluded to in his response, the literature we found reported that the staff members actually administering the shocks often had obtained only high school diplomas. How can one be sure that the treatment is being handled correctly by people who do not necessarily have sufficient education to do so? Even if the treatment itself is sound and moral, as you assert, if it is not handled soundly and morally, is it not possible then for the good to be canceled out?
Several aspects of the JRC have seriously concerned us here at Brandeis, hence the group and this article. Most essential of these was the basic question addressed by Nathan, Is it moral to use electric shocks on children under any circumstances? This continues to be our basic moral concern. However, a number of more nuanced issues exist, many of which you responded to here. I would like to hear what you have to say on this topic.
Thank you.

While it is very clear that Mr. Israel and the JRC have good intentions, I believe that Israel fails to see the great moral dilemma presented by the shocking of children.

Life cannot be divided into a simple equation that weighs the 'risks and rewards' that he keeps on referring to. There are complexities that arise when dealing with the question of whether it is appropriate or not to electrocute children, fully abled or not. As Mr. Robinson pointed out, Israel takes the Machiavellian approach, it doesn't matter to him what pain is inflicted on these people, all that matters is the final product, the final result.

I cannot accept this, and for this reason I support the efforts of the Brandeis Students Against the Judge Rotenberg Center.

There are other options.

In many of the comments I have seen about this topic, there seems to be a kind of horror factor at the thought of skin-shock being administered to someone. Perhaps this is because most persons have never experienced this and there is a natural fear of the unknown. The sensation has been compared to a hard vibrating pinch or a vibrating sting that lasts for two seconds. But it has no lingering sensation and no side effects, either short or long-term. And remember: we are not talking about the use of electro-convulsive shock, which is a very different type of treatment and which is never used at JRC.

If given a choice between taking a 2-second shock to the surface of my skin and being placed on psychotropic medication, I'd easily take the skin-shock. If given the choice between being subjected to being "taken down" to the floor by 2-8 staff members versus a 2-second skin shock, I'd easily choose the latter. And here are some other typical consequences that a special needs student with severe self-abusive or aggressive behaviors might have to receive as treatment alternatives to skin shock, all of which would be much more intrusive and more objectionable: being placed in a time-out room (isolated) for long periods--possibly for hours--during which one is prevented from coming out, until one is showing calm behavior in the time-out room; being physically restrained by 2-8 staff members on the floor for as long as one continues to try to be aggressive or self-abusive; being placed in a psychiatric hospital; or being placed in a restraining device such as a straight jacket or on a restraint board for long periods of time.

It is understandable and desirable that we try to minimize any kind of discomfort that is administered to special needs children in the treatment of their major problematic behaviors. But when thinking about this issue, please consider two things. First, we at JRC are dealing a very small fraction of the population of special needs children. We deal with those that display very serious life-threatening behaviors – for example, behaviors that could cause an individual to go blind or to die. We are not talking about cute little autistic children who sit in the corner and whose behavior problems can be easily managed in public school or in most nonpublic special needs schools with positive-only procedures.

Second, please consider what alternative procedures will have to take the place of skin-shock if it is ruled out. If we get rid of skin-shock as a treatment procedure, the realistic alternatives are psychotropic drugs, restraint, isolation procedures, placement in a psychiatric hospital, jail and/or expulsion from the program because the current setting is unable to cope with the problem behavior. Are these alternatives really morally superior, safer, preferable and more effective?

Some will argue that none of these procedures are necessary--that it is possible to treat severe problem behaviors without any of these procedures. I wish it were true. I ask those of you who believe this is true to read a paper on our web site that deals with 10 students who were expelled from programs in Massachusetts and New York that employ "positive-only" procedures. All were expelled from those programs because they were unable to treat the problem behaviors using "positive-only" treatment and drugs, and were eventually referred to JRC for effective treatment. In one case, the positives-only program that expelled the child specifically stated that the child needed aversives and referred the child to JRC. The paper is at http://www.judgerc.org/posonlyprograms.pdf and there is an executive summary at the beginning if you do not have time to read the entire paper. These ten students are only a few examples of the JRC students who have been rejected or expelled from countless "positive only" treatment programs.

I also recommend an article by Dr. Richard Foxx, entitled, "Severe Aggressive and Self-Destructive Behavior: The Myth of the Nonaversive Treatment of Severe Behavior." Dr. Foxx has nothing to do with JRC. The full text may be found at http://www.judgerc.org/SevereAggressive.pdf.

Mr. Israel makes a good point regarding the more traditional treatments used in place of his shock treatments. It is true that there are children for whom positive-only procedures will not work.

What I am unclear on is why Mr. Israel seems so convinced that these other treatments are all such a bad idea. The phrase 'psychotropic drugs' seems to be a particular favorite of his. As Mr. Robinson pointed out in his earlier comment, the word psychotropic merely means 'having an altering effect on perception, emotion, or behavior'. Does Mr. Israel consume alcohol, or caffeine? Both of these substances, commonly used by large portions of the population, would fit under this definition. So what's the problem with psychotropic medications? If used properly, they can improve our moods, our behavior, and more. I simply can't understand Mr. Israel's issue with the proper, careful use of such medication.

I use "psychotropic" to distinguish drugs that are designed to change behavior from those that are prescribed for medical reasons. All psychotropic medications have worrisome and sometimes poisonous side effects. Some of the original anti-psychotic medicines caused permanent damage to the nervous system in the form of tardive dyskinesia, an uncontrolled shaking for which there was no cure, enlarged breasts, constant drooling, enlarged gums. etc. Some of the current anti-psychotic medicines cause excessive weight gain and diabetes. Some current anti-depressants cause increased suicidality in children and adolescents. Some drugs impair cognitive functioning, making learning more difficult Some drugs have metabolic effects that shorten the individual's lifespan. The human body is not designed to get rid of these drugs and too much of them can damage the liver and kidneys. The mother of one of the first individuals every placed at JRC died (about six months after he had been removed from JRC) in his 20's from kidney failure caused by overuse of psychotropic medication.

For a table listing the side effects of common psychotropic medications please see http://www.judgerc.org/sideeffects.html

For links to the full text of 29 articles dealing with the problems with psychotropic medications, please see http://www.judgerc.org/Key_Features/medpolicy.html

The currently known side effects of these drugs are only the ones we happen to have discovered during the years since the drug's introduction. The really scary thing is that for many psychotropic medications, side effects are not discovered for 10, 20, 30 or more years and then it may be too late to undo the damage.

The evidence for the effectiveness of psychotropic medications with children is very thin. Almost all of the testing that has been done on these drugs has been done with adults. This lack of evidence of effectiveness in treating the behaviors of children, combined with the serious negative side effects, has caused the FDA to refuse to approve almost all of them for use with children. Psychiatrists who prescribe them for children prescribe them "off label," meaning that they are prescribing them even though the FDA has only approved their use for adults.

All of this might be acceptable if the drugs really helped to treat aggressive, self-abusive or other harmful behaviors. Unfortunately they usually do not. Psychotropic drugs really cannot be targeted at individual behaviors; instead they often have a global effect on the whole body and its functioning. If you give a person enough psychotropic medication, he/she will be put largely to sleep for much of the day. As a result, such a student will be less aggressive while he is full of the drugs; however, he/she is really no longer a sober, vibrant, interesting human being and instead is in a sleepy, zombie-like, drugged stupor.

One mother told me her son had been so drugged in a placement prior to JRC that he could not even recognize her. Essentially such a student is "out of it" when in such a condition and is not able to study, learn or enjoy a normal life. We have had two cases where students were given so much psychotropic medications when they first came to JRC that they went into a life-threatening drug-induced coma, and had to be hospitalized for weeks due do the poisonous effects of the drugs.

Once psychotropic drugs have been prescribed for someone, that person will often on such drugs indefinitely. Unfortunately, the psychiatrist usually does not have objective behavior data for evaluating the drug's effects and has to rely on subjective impressions of the individual or of others around him to judge effectiveness. Often students end up taking a whole cocktail of drugs in which the interactions among the drugs can be cause for even further concern.

Some of the parents of JRC students are extremely grateful to JRC simply for the fact that we are able to take their students off of the cocktails of ineffective psychotropic medications that they had been placed on in other facilities. Some of our higher functioning students are able to tell us how much better they feel by being able to get off the medications they had been on.

In summary, it is always better to be able to treat problem behaviors in children and adults without using psychotropic medication if that is possible.

I sometimes wonder why those who are so vigorous in opposing reward/aversive therapy are not equally or more vigorous in opposing the use of ineffective and mind-numbing psychotropic medication. Why does the infliction of these drugs on children not raise equal or greater moral and ethical concerns than reward/skin shock treatment does? Is it because the damage that the drugs are doing to the body is often unseen? Is it the fact that they may be prescribed by a physician? Is it that we are bombarded with commercials from drug companies singing their praises?

Mr. Israel, with regard to your question about why those of us who oppose your treatment methods are not so opposed to psychotropic medications, while I can not speak for everyone, I know that I have seen plenty of cases where these medications greatly benefited people in my life. Now obviously every medication will not have the same effect for every person, but I am inclined to place at least some level of trust in such medications after seeing what is possible when they are used correctly.
Yes, some mood altering drugs will have a negative affect on the user, but I feel that careful use of these medications can be beneficial. It's often a matter of finding the right medication and the right dosage, and that may take time. And while there may not be a perfect medication for every child at JRC, I am more inclined towards at least attempting to find the right option for them than causing these children any amount of pain.

Mr. Robinson seems to take great pride in the fact that he has looked at both sides of the controversy concerning the use of aversives before taking his position. However, I see no mention of him actually talking to any parent of a child on the temporary skin shock device nor with any student who has benefited from its use. Has he even visited the school? Mr. Robinson also states that the use of such a device is immoral. Calling something immoral is always easy from a distance. As a parent of such a child who has been greatly helped by the educational/rewards program I found the numerous medications prescribed by prominent doctors in the field of autism to be immoral. No, I'm not against medication if they work. Giving medications when all they do is sedate the child or make him sick is not the answer. One clinical director of a previous failed placement by NYS said that perhaps the best thing to do is warehouse my son in a place that makes no demands on him. That is immoral! The Judge Rothenberg EDUCATIONAL Center helped him get a high school equivalency diploma and now they are looking into community college courses. The last placement couldn't even get him to class without a struggle.

I am not denying Mr. Robinson's good intentions, however, he must get all the facts before he starts something that can have life threatening consequences to many, many children.

There is an open letter to the American Psychological Association asking them to join in condemning the practices of the JRC. It is available on the web at

I believe that Nathan, and others, are doing a fine job here in their debate with the director of the JRC. I do, however, want to offer comment regarding the directors claims that the deaths of Vincent Milletich and Linda Cornelison were of "natural causes."

Here is information related to the death of Linda:

On December 19, 1990, Linda Cornelison, a patient who was mentally retarded and non-verbal, died of causes related to stomach perforations and ulcers. The Center failed to properly diagnose these apparently pre-existing conditions, and failed to provide an appropriate diet and treatment. When symptoms occurred that should have provided an opportunity for further examination, the JRC instead opted to punish her with a plethora of aversive treatments, including 61 that were administered on the day of her death. Linda, who had weighed 120 pounds when she began the Center?s food program, weighed just 90 pounds at the time of her death, which was less than one year later. A subsequent report on the investigation of her death was released by the Disabled Person?s Protection Commission (DPPC), and the Massachusetts Department of Mental Retardation. Report information is also available at this link: http://normemma.com/lcorneli.htm The investigation included the interviews of 72 witnesses, the review of hundreds of documents, and reports by four experts. The report contained descriptors such as, ?egregious? and ?inhumane beyond reason? in describing the actions of several specific staff members. Some of the treatment was said to violate ?universal standards of human decency?. Abuse and violations of DMR regulations were also found in the woman's treatment by JRC/BRI prior to her death.

Here is information related to the death of Vincent Milletich:

On the 23rd of July, 1985, Vincent Milletich, a 22 year old student with Autism, died while he was a resident at the JRC?s (Then Behavior Research Institute) group home in Seehonk, Mass. According to a New York Times article, ?he (Vincent) had been shackled, fitted with a helmet and forced to listen to static noise through earphones. The Rhode Island medical examiner who performed an autopsy on Mr. Milletich said the victim died of asphyxiation but said it was not known what cut off his oxygen supply.? The article goes on to say, ?Judge Ryan said Mr. Israel ''was negligent in authorizing the use of this helmet without having an expert in helmet construction design the helmet or subject it to a safety inspection.''
http://query.nytimes.com/gst/fullpage.html?sec=health&res=9B0DE0D7153BF93BA35752C0A961948260


On page 153 of Joseph P. Shapiro?s book, No Pity: People with Disabilities forging a New Civil Rights Movement, Crown Publishing Group (January 1994), the writer reveals, ?Vincent Milletich died after BRI workers `pushed his head between his legs, cuffed his hands behind his back, put a helmet on his head with radio static hissing into his ears and masked his face. He went limp and was declared dead on arrival minutes later at Rhode Island Hospital in Providence.?

According to Director Matthew Israel?s own words, posted on JRC?s Website, ?The cause of death (Vincent?s) was ultimately determined to be natural causes related to his condition of tardive dyskinesia and not due to the restraint procedure that had been employed.? http://www.judgerc.org/history.html However, his claim is not substantiated in the coroner?s report or the findings of the court, which explicitly stated that asphyxiation was the cause. Vincent?s parents have said that he suffered from epilepsy. Regardless of what other diagnosis Vincent may or may not have had, Judge Ryan did declare Mr. Israel ?negligent? in regards to the helmet that was used in his treatment on the day of his death. This fact is a linkage between the JRC staff and the death of Vincent Milletich that Matt Israel cannot evade with clever words.

The director of the JRC also claimed that Jennifer Gonnerman was incorrect about Danny Aswad's death occurring at a JRC facility. Danny's death did occur at BRI California, which was a facility under the direction of Dr. Israel. The predominately aversive California BRI disappeared under intense state scrutiny and intervention, but another operation emerged which is known as Tobin's World (named after Judy Weber's son), Judy was recently married to the Director of the JRC. Good questions for the JRC Director are these: Who was responsible for Danny Aswad being restrained while laying face down and unattended for an hour? If he had been attended and not restrained, could his death have been prevented?

Parents who have placed a child at the JRC, or who may be considering placing a child there, may want to carefully consider the potential harm that can come upon a child when extinguishing behavior is the primary focus, and underlying causes of behavior are not considered. Sometimes behaviors are indicative of major illness. The death of Linda Cornelison is an example of this.

As an advocate, I refuse to allow these deaths to simply be forgotten, or inaccuracies to cloud the facts.

I am greatly dismayed at the responses from students to the Judge Rothenberg Educational Center and its court approved use of a temporary skin-shock device. When I went to college serious research involved more than just reading reports and taking them as facts. One had to go in the field and actually do research. Of course that may cause one to change his/her position which many do not want to do after taking a strong position on a very serious matter. And the use of aversives is a very serious matter for my son, my wife and me for it has saved him from causing great harm to others and himself. So PLEASE, before you write letters, picket, etc., visit the school, talk to parents and students.

After 12 years at JRC my son is now transitioning into living independently. He is inteligent, considerate and able to make sensible decisions regarding his future. He was on the GED. In the beginning it was the only thing that would stop him from hurting himself or others. Gradually the use of the device was diminished. During this time is when he was able to be taught to realize the differance between right and wrong actions. For the first 16 years of his life he had become totaly uncontrolabale.Every school he had been in had given up. When I could not handle him without fear of hurting him I found JRC. He is now able to have a life. No amount of love or patience could reach him. Now he is happy and verfy kind. Volunteers several days a week and works. He will be successful. People who meet him have no idea of the hard road he traveled and are surprised if he tells them. You should not try to stop JRC. Our son said he will never stop helping JRC so that other students will have a chance to learn as he did.

My daughter has been at JRC for the last 2.5 years after numerous placements in special schools, group homes, hospitals, etc. When she arrived at JRC she was on 9 different psychotropic drugs. She developed diabetes due to these drugs and they did nothing to stop her self-destructive behavior. Every psychiatrist and so-called expert we went to had a different diagnosis and treatment plan. NONE of them worked. She was totally out of control, cutting herself, disappearing for months at a time, attacking others with little provocation. There are no places other than a psychiatric hospital in NYC that can keep a child behind locked doors and safe, so my daughter disappeared from every place she was in. The hospitals she was in did nothing but continue to add drugs to her treatment plan which did nothing to improve her behavior. They only put her in a semi-catatonic state where I almost didn't recognize her. She has made great strides while at JRC and although the skin-shock treatment hasn't been used on her, she has been approved for it by myself and the courts. I have personally seen and heard lower functioning students banging their heads against their desks, biting themselves, etc. and no amount of postive reinforcement or trying to gently stop these kids from hurting themselves will work. When in an agitated state like that they either need to be physically taken down and restrained or restrained and then drugged into submission. They could spend the rest of their lives in this drugged out state but is that any way to live? JRC has given these kids a chance at having much more "normal" time in their lives than they ever could have before. I equate this skin-shock treatment just about the same as giving a smack to the hand of a young child that is going to touch fire, or cross the street. That is not child abuse by any means and sometimes it's the only way to get your point across and if it saves their life, what is the problem here. We are not talking about the shock treatments that are used to deaden the brain, we're talking about a deterrent that these kids can immediately relate to the behavior they are exhibiting at that moment and learn to stop repeating that behavior. People who have never experienced the nightmare of having an emotionally or mentally handicapped child have no idea what we as a family go through, and how little help there really is. Then answer is not always a pill.

I am a parent of a student who is currently attending the JRC.I understand the response most people have about the use of adversive therapy. The thought of electric shock brings memories of "one flew over the cuckoos nest" and other horrors. Also the argument of it being morally wrong has been brought up over and over again. I understand how people can have these opinions but you must see this from all sides. Here is how our familly came to JRC.

Our son is autistic,only minimally verbal was attending a local day program. He was given over 6 different medications to curb bad behaviors (the medications include respiradol, and other antidepressants, to the point he was napping durring the day and in a fog the rest). Because of the medications there was substantial weight gain in the end he was 327 pounds.He had learned that if he acted out (hitting ect,) he would get a time out which he enjoyed because in time out there were no work demands. In the end the school informed us we need to find another placement because they could no longer handel him. Also the local transportation company would no longer transport him because of bad behavior. At home he was also becoming violent attacking his siblings and breaking windows and furniture in rages. We then visited all of the schools recomended by the school district but none of them would take him, because of the behaviors or because of lack of space. At one point we at a local mental hospital but he was discharged after 16 hours after being medicated and no beds available.We came upon the JRC almost by accident when in a panic we were calling schools looking for placement and one of the administrators said "off the record" the JRC might be a good fit. We visited the school and they outlined the program and told us that adversives might be used if the positve reward program did not work.They also told us of thier medication free policy and that our son would be weaned offf all behavior medications.It was also explained how the adversive (GED) system worked and how the court and a judge and attorney would be involved if the adversives would be used.

After 6 months the positve reward program was not working. We had a meeting at school and signed the paperwork allowing JRC to pursue the GED program. We went to court met with the judge, the attorney, and independant medical and mental health people to get approval for this program.

Our son has been on this program for about 4 years. After being off all mediactions he weighs 175 pounds and is healthy and alert. His violent outbursts are a thing of the past. This program has saved his life. I do not know where we would be without the JRC. THe adversive therapy program is not for all students. But there is a small number of students that need this because all other methods have failed. I admit that this program is not our firt choice but was our only workable option. I would like you to meet our son and see first hand what the program has done for him.


Bill Murphy

One of the things that I have witnessed several times while involved in my efforts of opposing JRC practices, is that the parents, and sometimes even students, will become involved (within forums like this) in supporting the JRC practices. This will often take place very shortly after the director of the JRC makes his appearance. As a person with Asperger's Syndrome, a parent of a son with Autism, and the brother of a sister with Autism, I will not respond harshly to these individuals. I fully understand how coping with severe situations, that most people have never witnessed, can lead to decisions made out of desperation. I also understand that there will be some situations in which the application of skin-shock, or other painful aversives, can lead to diminished self-abusive behavior (SIB) or, in very rare situations, complete elmination of such behaviors. It may also reduce or eliminate other behaviors, including those that may be dangerous to other people or that cause damage to property.

The use of punishments or restraints has historically been effective from the stand-point of external observation. Some governments have used, and some still use, methods of power that subdue certain behaviors that are not tolerated by that government. While suppression can be effective at creating a superficial calm, it has extremely limited effectiveness at dealing with underlying causes of behavior.

The application of severe forms of punishment will usually result in other negative effects. Dr. Israel's teacher at Harvard, Dr. B.F. Skinner, who is considered by many to be the most influential psychologist of the 20th century, clarified his position regarding punishment at the age of 83. Here is an excerpt from an August 25, 1987, New York Times article, titled "Embattled Giant of Psychology Speaks His Mind:

"The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ''aversives'' -such as pinches and shocks - with autistic children. ''What's wrong with punishments is that they work immediately, but give no long-term results,'' Dr. Skinner said. ''The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever
punishments are used.''"

On page 29 of B.F. Skinner's book, Beyond Freedom and Dignity," it states, "If two organisms which have been coexisting peacefully receive painful shocks, they immediately exhibit characteristic patterns of aggression toward each other. The aggressive behavior is not necessarily directed toward the actual source of stimulation; it may be "displaced" toward any convenient person or object. Vandalism and riots are often forms of undirected or misdirected aggression. An organism which has received a painful shock will also, if possible, act to gain access to another organism toward which it can act aggressively."

At this moment I would suggest that three considerations are of immediate importance regarding the use of aversives and mechanical restraints at the JRC.

Consideration #1:

Underlying Causes are being Ignored.

If one of us were having a heart attack and exhibiting certain behaviors indicative of a heart attack, our very future would be dependent upon those symptoms being recognized and properly treated. If we were the subject of an incorrect diagnosis and subsequent treatment then our life would be adversely effected and could ultimately cease as a result.

Linda Cornelison's death in 1990, is an example of where the BRI/JRC punished behavior while failing to identify underlying causes. In Linda's situation, stomach ulcers and perforations, lead to her symptoms/behaviors, and the BRI/JRC staff applied aversives as treatments for the behaviors. Linda died without a correct diagnosis or appropriate care. The director of the JRC has often attempted to distance himself from her death, by saying that she and others died of "natural causes." While in Linda's case this may be somewhat true, it still does not diminish the reality that the JRC staff punished her for behaviors/symptoms associated with a medical emergency, and she died without appropriate diagnosis and care. While under JRC care, her weight had dropped from 120 pounds to just 90 pounds, and they had ample opportunity to realize that she had a serious medical condition. I wonder if the director of the JRC sees Linda's frail image in his mind, and considers whether she could still be alive if she had been properly diagnosed and treated.

Children and young adults with Autism often have underlying medical conditions that can be treated if a correct diagnosis is obtained. These conditions often result in behaviors that are difficult or impossible for parents or caregivers to manage. While some JRC parents have sought out diagnosis and treatment, the underlying causes are often difficult for even skilled medical professionals to discern or discover. The lack of a correct diagnosis does not justify the use of aversives as "treatment."

Many children with Autism have extreme difficulty coping in a world where they are often subject to typical methods of teaching that they have no ability to apply to themselves. This is a factor that often results in severe inner frustration for the child.

Coping with sensory issues is another reality that a person with Autism deals with. The average person who does not have Autism may not be able to understand how difficult this is for the child, and may not know how to adjust the child's environment to accommodate these needs.

The JRC environment does not take these factors into consideration. They will instead identify certain negative behaviors, and apply punishments. Their concern is with extinction of the behaviors. Underlying causes are not considered important.

Consideration #2:

"Treatment" is being administered that if applied under any other context, or to any other group, would be considered torture.

There seems to be a rationalization taking place that makes it possible for children with Autism, other developmental differences, or mental health challenges, to be treated in a manner that would otherwise be considered torture for any other group. "Treatment" based upon this rationalization is being justified and the results are being declared as "effective" because some of the target behaviors are being stopped or brought under control. However, suppression of behavior by means of force should be highly suspect. This methodology is normally seen in acts of police intervention or military actions. As we consider this, it should be apparent that children with Autism are not typically criminals or enemy combatants.

While a few parents are able to declare that their child has improved, there are many other children who continue to receive skin-shocks, or are deprived of food, or are placed in mechanical restraints, and their behavior does not improve. Former JRC staff member, Greg Miller, reports that some of the children who are shocked with the GED-4 device (4 times more powerful than the standard GED) are subject to so many skin-shocks that their limbs become covered with scab like injuries where blood comes to the surface after the shocks. He has described how the contacts are moved frequently to minimize injury, but still yet this scabbing phenomenon occurs. In Greg's own words, he describes seeing JRC clients who had, "scabs on top of previous scabs, resulting from so many scabs that anywhere you move the electrodes on the arms, legs or torso will result in placing the electrodes on top of another scab." Dr. Israel, would you be willing to explain the meaning of the word "crispy," as it is used by JRC staff members? While you are at it, can you also explain what a GED Holiday is?

It is my belief that most, if not all, of the parents who support the JRC in forums such as this have never witnessed many of the horrors that take place inside the school.

Consideration #3:

The lack of resources centered in best practices does not justify the application of less than best practices or even worst practices.

I know first hand that positive interventions work. However, they will usually only works when underlying causes of behaviors are correctly identified and replacement behaviors are taught. Sometimes environmental changes are necessary. Sometimes parents and care-givers may need appropriate education and support. It is unfortunate that correct knowledge and supports are not always available, sometimes even after extensive searches are made by parents/caregivers. We need to diligently work in this area. It is not enough to just oppose treatments that are centered in archaic worst practices, such as those that take place at the JRC. We also need available resources that are established in best practices and that are proven through research. The knowledge exists; it is the availability and access to resources that is severely lacking.

While the practices at the JRC are perpetuated, the awareness of, and growth of effective best practices are hindered. Demonstrating that force can accomplish a certain purpose is not a matter of rocket science. Applying force can subdue entire countries, so it is not unreasonable to understand how it can be used to control behaviors. Best practices will usually require more knowledge, more time, and more effort. However, the long term benefits will be far more rewarding to all people involved than the application of force.

In conclusion, I strongly oppose every aspect of this facility. Torturing children is despicable. Positioning children in front of computer monitors, while some of them do not even comprehend what they are doing there, is a mockery of education. Observing every student 24 hours a day is a violation of their basic human right to privacy. Forcing students to carry around the very device that punishes them is degrading to them and a source of perpetual fear.

I ask any person who reads these words to consider how you would feel if you were the one being shocked, mechanically restrained, and/or deprived of food. Next, imagine that this is happening to you under circumstances in which you have absolutely no awareness of having done anything wrong. Finally, imagine that you are one of the students who has no ability to stop the target behaviors, and therefore you are shocked many times every day until there is no area of your body to shock that is not covered with scabs. Perhaps then the GED holiday is the only respite you have to look forward to while under JRC care. I will leave you with those thoughts.

Having read the entirety of this comment board, I admit I am a bit drained. The persuasiveness of the arguments on both sides of the issue at hand is so great that I find myself pulled much farther from camp to camp than I had ever expected.

Let me say one thing:
Bravo to my peers at Brandeis for legitimately holding their own against the very founder of the organization they are fighting; I am proud to know several of them.

And you know what? I want to declare my respect for Matthew Israel in treating the action being made at Brandeis seriously and taking the time to give our students the reponses they deserved.

With the modest amount of nerdiness which I can claim, I offer the following analogy to what I have just witnessed: were this the battle of Helm's Deep, and Brandeis' bunch is the human-elf-ent-etc. coalition, and Israel and the parents are Sauron's army of Urukhai-Orcs-etc., then Derrick Jeffries is Gandalf.

The war may not be over, but (for now) the battle has been won. And that's all I'm gonna say about that.

Linda Burke wrote: "I noticed that you don't suggest any alternative treatments or places that you would recommend other that JRC. Could that be because there aren't any? "

This is my personal opinion, and I am certain that some will disagree with me. I would suggest looking into the knowledge and resources available from Division TEACCH at the University of North Carolina, Chapel Hill. Eric Schopler, and his work has always been less visible than ABA which is a Behaviorist model. However, it is research based and has been proven highly effective. Please see: http://www.teacch.com/welcome.html

Schopler's Developmental model looks underneath the behavior, to see what the developmental losses and abilities are. Having an understanding of the underlying issues provides a basis for treatment that is based upon genuine knowledge of the child's needs. The behavioral methods of the director at JRC do not consider underlying causes as being significant, and they are based upon increasing levels of force and environmental manipulation.

Children with Autism, often from birth, find themselves in a world that is less than ideal for them. They may be tormented by environmental attacks. My parents, as an example, did not recognize my sister's sensory needs. Because of her being born during a time of ignorance, which was complicated by the ludicrous teachings of Bruno Bettelheim and company, none of her needs were recognized. When she would rip off her clothing and run away from her parents, they did not have the awareness to know that the clothes they dressed her in were like sand-paper to her body. My father applied discipline that he believed to be appropriate, but it was strongly centered in criticism and efforts to try to force her to behave in a typical manner. She withdrew further and further into herself. She clawed at herself, attempted to swallow sharp objects, put her arms through glass windows, etc, etc, etc. They were unable to keep her safe, and decided to place her in a state mental health institution when she was 9 years old. I was 4 at that time, but can still remember that day.

Even though my parents placed my sister in such a place as that, they loved her with all of their heart, as I believe you also love your child. Even today, while in their 80's they visit her regularly. Through the years, as she was transferred from one facility to another, and drugged with one medication after another, she went through horrible times.

Today, after finally being placed in a facility where positive intervention techniques are applied, and after her diet has been modified, she is actually a very calm person. One of the things she loves most is working and being a valued part of her community. She has people around her who are not constantly focusing on, and correcting behavior with verbal directives, but they allow her to have her little idiosyncrasies that do not harm her or anyone else. She is respected as a human being. It is just so unfortunate and such a shame that it took so long for her to finally be treated decently. However, her life is not ideal. She does not live in a home and with a family as other people do. She probably never will. Things could have been so very different, if it were not for the era of darkness.

The methods employed by the JRC director are no better for people with Autism than Bettelheim's allies identifying my mom as a "refrigerator mother," and sending a nurse to our home to observe her. We have only shifted from one form of ignorance to another. Yes, force works, but at what cost? Because a parent observes their child's negative behaviors cease or decrease, does that justify the methods, or prove them effective? What about the other children at the JRC who have behaviors that even the GED-4 does not stop? Is this "treatment" EFFECTive when these children are shocked 30 times a day(the maximum allowed without special permission)? Dr. Skinner, who was a TRUE scientist, said that this type of treatment causes "Bad EFFECTS." He was, and still is, correct.

Here are some words from Greg Miller, former JRC staff member, that he shared with me:

"Students lives are not validated, but are invalidated through their tasks. I now work at a school for children with autism where students lives are validated through the many activities that they can do that they might not think that they could do. Music jazz band, choirs, riding unicycles, gymnastics, ceramics, art, skits and plays, baseball, golf, real jobs in communities for older students, academics broken down so that they can learn them and succeed. We just don't know what each student is capable of doing until we try. And success in accomplishments and identifying individual abilities and creating bonds with staff are highly effective tools for reducing student behaviors.

JRC does not even try. They have students folding wash clothes over and over and over, the same ones, for hours, or stuffing three small stuffed balls into a small 4 x 4 x 4 inch box over and over and over for hours. The older students count 12 popsickle sticks and put a rubber band on them over and over all day long, seven days a week in a room with no windows. Imagine doing this for the past 10+ years and wondering if this is all that life has to offer you. Ask if you might get frustrated and scream, or flip the table you are at, or jump up out of your seat. For these reasons the students are shocked in front of their 40+ peers."

This is the report of a man who actually worked at the JRC. This is what the parents do not see. The director, with the help of the woman who is now his wife, has created a glitzy looking environment for you to see. This is something that the director DID learn from Dr. Skinner; how to influence people's feelings and actions through environmental manipulation. The parents, see this environment, they may also see a ceasing or reduction of certain behaviors, but the whole truth may not be visible to them. The same man who instructed his BRI California staff members to pinch students (using long fingernails) in places that the parents would not easily see (as reported in California legal documents), is the same man who now directs the operations at JRC. Please think about these things the next time you enter into his glitzy rooms. You may be seeing just exactly what he wants you to see.

A valuABLE program is one that looks at the WHOLE person, not the behaviors alone.

I have identical twin brothers with severe life-threatening behaviors extreme and rare even for persons on the autism spectrum. I have been practicing psychiatry over ten years and I specialize in persons on the autism spectrum. Yet, I have only seen a handful of cases which can be classified as severe as my brothers. My daughter is also autistic. She is five, nonverbal but I am thankful she does not have the behaviors which my brothers exhibited, although I am in tremendous debt paying $90,000 a year tuition for her school, plus speech, occupational and physical therapy. For her first month of school I had to drive her every morning and start my job at 11 AM, leave at 7:30 PM, get home at 9PM and do the same the next day. Thank goodness my extended family has been supportive. Her school does not employ the use of aversives and she does not need it. I did try to get her into a public school which was appropriate for her, but they only accepted seven children from all of New York City last year and my daughter ended up on the lottery wait list. When I attended the lottery there were many parents in tears. If NYSED (New York State Education Department) truly cared about these children there would be an appropriate placement for each and every child. Public school programs here many times are not providing the services which are in the child's federally mandated Individual Education Plan. New York City public school autism programs are also using methods with no scientific evidence such as the Miller method and the Option method when there are methods with scientific evidence. Using an unvalidated method when there are validated methods to treat a condition is unethical. I do not understand how people can take NYSED reports seriously when many of their own public schools are not in order.

Regarding my brothers, one twin has lived at JRC for
almost twenty years. Before arriving there he banged his head so severely he had to have surgery to close it. He would bang his head suddenly, even during the night without a clear reason. He was in a hospital for over five months, and my parents were told his insurance was running out and they would have to flip the bill. He had no education in the hospital because he attacked the teacher. He also became very sick from the medications used to try to control his behavior. He had obesity, drooling, sedation and tardive dyskinesia. At one point he could have died from neuroleptic malignant syndrome from his haldol. The medications did not control his behavior. In the hospital he had one to one at all hours and he still needed repeat suturing for repeated head banging. The board of education requested my parents waive my brother's right to an education. They said there was no place which would take him. My mother found out through her internist about the Judge Rotenberg Center. We got him tranfered within a few days of the insurance running out. He was taken off all his medications there although he still has permanent tardive dyskinesia. He is happy there and states he wants to "stay at JRC forever." He enjoys the reward store and going on trips such as the zoo, museums and special olympics. I am calm to put him in the back seat of my car with my small children and take him out. (Prior to arrival at JRC he would attack my mother while driving). He does receive skin shock on average once to twice a month. At times he will actually ask to wear the device because he knows it gives him boundaries. Most of all, headbanging is a thing of the past.

I will now discuss my other twin brother. He once did very well. He had full time job for two and a half years and traveled independently. He moved into a group home during this time. One day another worker was teasing him and repeatedly was telling him he had to work until 5 PM when my brother knew that he leaves at 4 PM. This was a fixed routine for him. My brother became so agitated he grabbed the other worker's butcher knife. I understand that my brother had to be fired. Since then, he has gone down hill completely. He started to develop a compulsion regarding fires and tried to place himself and someone else on fire. He has run into traffic. He also was aggressive, tried to punch and choke others for a minor problem, i.e. a staple being out of place on a chair. He was placed on about fifteen different psychotropic medications in various combinations. He developed obesity, sedation, hypotension, tardive dyskinesia and generalized seizures, once on a subway platform during a snowstorm. The medication has not been helping his symptoms. He has been hospitalized since July. His group home understandably is unwilling to take him back and as New York does not want to fund Judge Rotenberg Center for him (and he cannot live with his closest relative) he has nowhere to go. I think even the Judge Rotenberg Center positive behavior program may be sufficient for him as there is consistency there. He did well in his day school when he was younger. Unfortunately in New York State the agencies funded to treat persons over the age of 21 do not have direct care staff appropriately trained in the principles of applied behavior analysis and consistency of a behavior plan is a problem in the agencies. My brother never required medication
when he was in his structured and consistent day school program before he was 21 or when he had his job.

My parents tried different approaches to my brothers, even took them to a doctor in Europe for a treatment. My grandfather spent about half his life savings to fincance the trip. There is no medication which has shown to be 100% effective to control behavior like my brothers have. Positive behavior interventions are not sufficiently effective in all cases to supress problem behaviors and there is a metaanalysis in 1999 that clearly shows this. As far as other methods proposed such as TEACCH and sensory integration, I think they can be helpful for some symptoms but they have never been shown to sufficiently treat the types of behaviors my brothers' have. In fact a small study on sensory integration resulted in an 11% decrease in the frequency of self-stimulatory behaviors. This does not cut it for a life threatening condition. However, there have been 111 peer reviewed articles on behavioral skin shock. I received the New York Medical College Award for Academic Excellence for my research on medication and behavioral skin shock to control life-threatening behaviors in persons with mental retardation or autism. Medication can sometimes be helpful but results are mild to moderate to decrease frequency of behavior. Behavioral skin shock gets on average an almost 100% decrease in frequency of behavior in subjects. My brother would be dead without this therapy and my other brother is dying.

To have a family member with special needs is stress enough. To be in financial debt is more stress and to have to deal with life threatening behaviors is even more stressful. I find the criticism directed toward the Judge Rotenberg Center to be further stressful. I feel my family is being judged and marginalized after all we have already been through.

Dr. Slaff, none of us mean to marginalize your family's difficult situation. The students involved in Brandeis Students United Against the Judge Rotenberg Center have spent a large chunk of our meetings discussing the center, and the difficulty a family must be facing before such a place would even become a viable possibility. None of us would even consider saying your family's emotional, financial, and physical struggles are meaningless, and I'm sure the decision to place your brother in the JRC and have skin shock as part of his treatment was taken very seriously.

However, that does not change our opinions on the ethics of the center. Just as you find it invalid to treat autistic children with methods that have not been scientifically backed, we have problems with the use of skin shocks. We find these treatments to be immoral, and whether or not they work, find it impossible to support using pain as part of the treatment plan for disabled children and adults.

Please understand that our goal is not to marginalize your family's struggle. We would never consider such a thing.

Let me ask you then, are you also against the use of defribrillators for cardiac arrythmias because they can cause painful electric shocks?

I would rather have not jumped into this, given that it seems that have grown and grown far beyond where it should have, but I must question Dr. Slaff's unnecessary comparison between the aversives used at the JRC and defibrillation for cardiac arrhythmia. Certain arrhythmias are life-threatening in the immediate and must be treated immediately. Obviously there is no question here. Others can be treated with a pacemaker. For non-life-threatening arrhythmias, when defibrillation is used the patient is anesthetized and unconscious. If cardioversion is used, the area of treatment is anesthetized. The only time the patient may feel pain in these four cases is if their heart has stopped and must be restarted, and I think we can agree that they have bigger concerns at that point than pain. The situations - that is, cardiac arrhythmia versus JRC-specific cases - are hardly comparable.

Head banging into sharp objects requiring general surgery is also life-threatening in the immediate and must be treated immediately.

I also want to add that it is immoral to allow someone to die and deny the only effective treatment available to them. My brother has had classmates leave JRC only to die soon later from their behaviors. One (K.B.) ran into the traffic and got struck and the other scratched himself to death as he had multiple infections throughout his body. He was only 26 years old. I find anyone who contributes to my brothers' deaths by denying him the treatment they need to survive to also be immoral.

Regarding a helmet, we tried that. My brother found it very uncomfortable and refused to wear it and if we tried to put it on he would grab it and throw it at us when he lived at home. On the other hand, he has even requested to wear the shock device because it gives him his boundaries. Furthermore, no one can wear a helmet 24 7. It has to be removed for cleaning someone's head.

To: Linda Burke,

I can understand your dilemma as perhaps few people can.

I believe you when you explain how there is a lack of "safe havens." The JRC facilities are an example of places that are not safe. Former staff member, Greg Miller describes one of the horrors that is a part of what is defined as treatment at the JRC.

"I told ABC in my 2+ hour interview with them about JRC
tying students into restraints on a four-point board and shocking them five times consecutively (over 10 minutes, or 40 minutes, whatever is on the student's plan) for certain behaviors. The person with the remote control in one hand that you saw on the documentary, and a timer in the other hand, would remain out of sight from the student on the board to administer the shocks. That is to create as much panic and fear in the student as possible to make the punishment far worse than the shocks itself. This was all pre-approved by parents and the judges and the laws of Massachusetts."

Linda, as you read in my previous words, "there is no organized system." This is very true, and many other parents and families have found themselves in similar circumstances. Some of them, of whom I have personally communicated with, were forced to find their own ways of coping in the absence of a system.

I wish that you could communicate with one of the parents who had to make the decision to remove her child from BRI California. Leaving her child at a place where the employees were instructed to grow their fingernails longer, so they could inflict more pain while pinching the soles of the children's feet, was not an acceptable option to her. If you have not yet read the official California report regarding the investigation of that facility, you may want to. The same director who was in charge of that facility is currently in charge of the JRC. The technology is perhaps more advanced now, but the methods and purpose of the methods are fundamentally the same; force compliance through fear and pain.

If you wish to speak with her (the parent who removed her child from BRI California) about possible options for your child, I could ask her if she is willing to communicate with you. I can make no guarantees though. The choice would have to be hers and yours.

I also communicate with a member of TASH who is familiar with some other options that may be available in the east. However, these options will not be within an air-tight facility. The care would be in your hands, with support from others.

If you are interested in finding a humane alternative, I will do everything that I can to help you. Entering into Best Practices is not going to be an easy route by any means. It may require life and lifestyle altering changes on your part.

Positive methods are not quick options, and that is generally why many people believe that they do not work. Changes are required environmentally, not just to keep household objects and people safe, but to make the environment tolerable and functional to the person with Autism. The predictability of life schedules and events must be established to meet the needs of the person with Autism. The communication styles may need to change from a direct communication style, to an indirect (real life social story) type communication. In this type of environment the parents begin to change from leader types who are pushing and pulling, to parallel guides who are instructing objectively according to the logical needs of the child. This would become a real life explanatory educational world wherein the child begins to see the benefit of the learning from their own perspective.

It is not an easy thing for neuro-typical people to change their lives to accommodate the needs of the person with Autism. Typically, parents will do everything humanly possible to teach the child with Autism to adapt to the neuro-typical world. Some children with Autism may be able to function in limited ways in such environments. Others are innately unable to function whatsoever in that manner. I believe that many problems begin to surface because of this clashing of two different worlds. The un-doing of this clashing of two worlds is not something that can be accomplished through shocking, restraining, or depriving of food. It is also impossible to change it through the use of medication cocktails.

No, I am not attempting to "close down the only place that has been able to help." The methods used at JRC are simply unacceptable. They are forceful, not helpful. They have been unacceptable since the early days in Rhode Island and California. If such methods were applied to criminals, enemy combatants, or any other group that we can imagine, they would be immediately condemned. And yes, such methods would be able to force compliance upon any other group, just as it does in many cases with children on the Autism spectrum. If you or I had a shocking device strapped to us, and our instructors or bosses held the remote device that would jolt us with pain, then we would be forced to comply. I oppose this because it is simply wrong. Attempting to justify such methods and devices because they work where nothing else seems to work is a compromise of moral and ethical standards. If oppression is justified by submission then slavery can also be considered acceptable. Even someone who is pro-slavery can claim that he can provide a better life for someone who came from an impoverished land where life was uncertain and food was scarce. The whips and chains are tools of compliance, while the slave now has good physical health from lots of exercise, good nutritional meals, and a roof over his head.

Under these types of circumstances, the rights and feelings of the slave or the person with Autism are made to be less than the rights and feelings of the person who has the power of choice over them. This is oppressive.

The argument will continue to be made that the person's life is being saved by this "treatment." Whether we are discussing the person with Autism who has severe self-injurious behavior, or the person in Africa who is skin and bones because of drought conditions, bringing oppression upon them is not offering them help.

I fully realize that some may be offended by my comparison of a situation wherein a parent is attempting to protect their child from harm, with another situation wherein a master is profiting from a slave. By bringing up this comparison I am not judging your motives. My purpose in using this illustration is to reason with others regarding the nature of oppressive methods and their effect upon a human being. There may be completely different motives and justifications for placing a child in the JRC facility verses placing a person into slavery. However, the effects upon the person being oppressed are essentially the same. To say that it is acceptable to treat either a person from Africa or a person with Autism with forceful and painful treatment, is prejudiced treatment when such treatment is not acceptable for other people. The oppressed person's basic rights and freedoms have been stripped from them. There can be no justification for this type of treatment.

I am curious. Does anyone have a problem with hidden aversives as practiced at the Anderson School in New York or police threatening disabled children and adults with pepper spray and taking them away in handcuffs as practiced in New York State? Well apparently NYSED does not have a problem with this even when they were aware of the situations. What action have you taken on your part about this problem? The "others" of which you have referred to in your earlier comment have not taken any actions. In the case of Anderson school, the child had old and new bruises and was deprived of food because he refused to wear his shirt. He became terribly sick. Of course the school could not inform the family and medically monitor the child or have any other safeguards because the use of aversives was not transparent. Of course, NYSED is correct in stating that New York State programs do not use aversives. This is something else. Since the "others" are not looking into "something else" what actions have you taken or are you going to take?

You miss the point here, Dr. Slaff. Asking those who oppose the JRC why they are not fighting what you describe as similar problems elsewhere does nothing to buttress your own argument. You're either avoiding the points raised or don't care enough to answer them. If it is deemed necessary, maybe we will indeed focus our efforts on other areas once the JRC's practices have been changed. Maybe not. But the issue is not New York state, it is Massachusetts. It is not the Anderson School, it is the JRC. And there is no reason we should dilute our efforts into facing multiple causes when we can focus them with our greatest intent and fervor on practices we know to be unjust.

If would be "unjust" to allow to brother to die because he cannot get this therapy. This is the only intervention that has kept him alive and safe.

I appreciate that some individuals are giving great thought to the postings and their responses here...but I do believe that the views expressed by some have given little, if any, consideration to those of us who must make decisions for our loved ones. Simply put, we have enough to bear when we have severely handicapped children whose lives depend upon us. The additional burden of hours of time--often late into the night --required in order to respond factually and truthfully to defend the very lives of our children is almost insurmountable--and, in itself, an immoral task placed upon us. I beg that those of you who believe you have a moral issue here think deeper below the surface of the morality you perceive as easily apparent. Become aware that we, the family members who have endured decades of unfathomable pain of empathy for, and decision on behalf of, our children, would come of necessity to realize deeper layers of moral and ethical question. Simply put, listen to what we have to say.

Other life and death issues are not precluded, just because we are dealing with the life and death issues of our children. For several days I could not post because 97-year-old Grandma Pearl (whose statement will appear in an upcoming post) has had an emergency hospitalization and I and other family members have been visiting her at the hospital, lengthening our very long days. Let me now tell you OUR ethical and moral reality...

I am a speech and language pathologist and audiologist who entered my profession before the birth of my handicapped identical twin nephews Matthew and Stuart, and have worked more than 30 years with special needs children and adults.

We must not dilute the issue.
We must be certain that a given treatment of last resort for a given condition is made available to those identified who require it.

In the case of a self-mutilating, self-blinding, child with a compulsive, self injurious behavior--SIB as it is known in the medical community--where all other interventions have failed (medical, behavioral, chemical, physical, etc.) we must utilize the treatment of last resort. We cannot allow that child to blind himself, cannibalize his own body parts, or excoriate himself to death.

I know of no one who has worked with my sister's identical twin sons Matthew and Stuart, or has known the inexhaustible sufferings of our family, that has voiced opposition to the use of aversive interventions -- the only therapy that has kept my nephew Matthew alive. On the contrary, they emphatically supported these interventions.

There are syndromes in which an individual will compulsively eat off their own fingers (Lesch-Nyhan syndrome for example) -- and even when restrained they will chew off their own lips, rip out their own fingernails or even pull their own intestines out of their rectum. The professional nomenclature defines stereotypic movement disorder with the sub-class of severe self-injurious behavior (SIB), obsessive-compulsive behavior, and oppositional defiant disorder. Although not commonly known to the general public, there is legitimate, documented, unbiased, medical information available about these conditions and syndromes and their comorbidity.

Some individuals with these rare, but known conditions, like my identical twin nephews Matthew and Stuart, will engage in acts so horrific they are incomprehensive to people like ourselves.

Repeatedly, my nephew Matthew smashed his head into sharp pointed or spiked objects, and finally, strong enough at the age of 16 years, he successfully impaled his head on a sharp point and split it open--necessitating a 5-1/2 months hospital stay at Lenox Hill Hospital in New York City. He was kept barely conscious on multiple drugs and guarded 24 hours a day one-to-one, and yet he re-split his head smashing it directly on the wound and requiring re-suturing. He managed to run into the isolation room of a patient with a deadly contagious disease. And a teacher sent to his room refused to return after just one brief interaction with him--when he grabbed her head and attempted to slam it into the corner of a wall. Although he could be discharged after surgery to repair the gaping hole in his head, no one would take him in fear of his self-mutilating and deadly behaviors, and he languished in Lenox Hill Hospital those many months. My sister, Matthew's mother, was asked by New York State to sign away her son Matthew's right to an education because New York State had no place for him. She refused to do so. Her husband, Matthew's father, feared for the loss of the family home when he was told by the insurance company that they would no longer pay for Matthew's hospitalization.

Matthew had no education--he had no life. On the contrary, the adverse effects of the psychotropic medications he was forced to take--the writhing movements that he endured--distorting his mouth, face, body, and limb, caused him to become completely unintelligible. He had been a verbal child, but for years he could not tell us his pain as the drug-induced dyskenias contorted his mouth and face. Our family members watched his tortured body and suffered with him. All of us in this family have traveled the agonizing course of waiting every moment of the day and night for one of my sister Lorraine's, tormented and frantic telephone calls.

As a professional and academician who has worked with special needs individuals more that 30 years, rarely have I encountered such monstrous self-mutilation, debilitation and suffering at one's own hands --in the educational or medical arena.

Yet there is an intervention, a two second surface skin shock inhibits the behavior, and reverses years of physical and mental damage, destruction and self-mutilation. Matthew entered Judge Rotenberg Center in Massachusetts where such intervention is utilized to save a child from chewing off their own fingers or tongue, or blinding or excoriating themselves to death, a "treatment of last resort" when all other interventions have failed.

The families of our children may, for decades night and day experience the fear of their child's torment--and the fear of their child's death--a slow and tortured death by self-mutilation like J.V., or an immediate death by riding a bicycle into a moving truck like K.B. Fear through the night and every waking moment of the sound of your child's head crashing through a pane of glass, or in Matthew's case--a sharp, pointed spike-like projection.

It is a matter of public record that J.V. (whose obituary appeared in the New York Times) and K. B. are two children who died when they were withdrawn from this type of therapeutic intervention. K. B. was returned to a New York State facility and drove his bicycle off the grounds into the back of a moving vehicle. J. V. compulsively ripped his flesh to the bone losing the use of his legs and confined to a wheelchair the last year of his life, when his infections could no longer be medically controlled, as the New York Times reported it, he died at the age of about 25. If the therapy is not available to those who desperately need it, others will die just like they did.

No one would take Matthew until he was accepted at Judge Rotenberg Center (JRC) where he now resides. When all other treatments have failed, JRC uses a COURT ORDERED, PARENTAL APPROVED, 2-second skin shock therapy, which Matthew has received to control his life-threatening, compulsive self-injurious behaviors (SIB) condition. Matthew has remained not only drug free in his current residence at JRC, he can speak clearly because his twisted and tormenting body movements gradually subsided as he was weaned from the drugs. Shortly before this posting Matthew called, as he freely and frequently does, to talk about his interests and activities. He enjoys his hobbies, dinosaur collecting, birds, his telescope, reading, visits and vacations with his family. Family members frequently visit Matthew on unannounced visits and are always welcome. Matthew participates in life and tells us he is happy and safe.

Stuart, Matthew's identical twin, had been residing in a residence within New York State. Skin-shock therapy is legal in New York State, but it is unavailable, (which is why New York State sent Matthew to Judge Rotenberg Center in Massachusetts). Because of the medications Stuart is forced to take to "control" his behaviors, he now suffers some of the movement disorders his twin brother Matthew no longer has. These same "drug cocktails", none of which have been approved for use in these conditions, have not altered Stuart's behaviors, but have only complicated them. Although never having been an epileptic, the medications have altered his brain so that his seizure threshold has been lowered and he has dropped unexpectedly in the New York City subway system -- we were called to an emergency room during a 12-inch snow storm recently because he was unconscious. Despite the medications, Stuart has had multiple and dangerous New York State approved aversive "take-down" procedures. He has been handcuffed and removed from his residence by the police, and has had 5 emergency psychiatric hospitalizations in the past few years. On one occasion he attempted to hold someone's hand over an open flame--almost setting the two of them on fire.

We know Matthew is alive, enjoying his life, and safe. He tells us he is happy. We have pleaded with New York State officials to have Stuart placed with his brother at Judge Rotenberg Center. As of this writing, Stuart, (who once worked a full-time job in the community, but has deteriorated in a "positive only" program), is at this moment, in diapers, in an acute care psychiatric facility for more than four months in New York for having bolted into city street traffic because (as he tells us) a string on his favorite chair was displaced. The hospital wants Stuart to leave; insurance no longer wants to pay; no facility wants to take Stuart; no one wants him because he is so unpredictable and dangerous to himself and others. WHAT IS YOUR MORAL ANSWER?

We know Stuart can die at any time, and Stuart tells us he is miserable. Stuart, like his identical twin brother Matthew, needs the same COURT APPROVED life-supporting skin shock therapy. WHAT IS YOUR MORAL ANSWER?

We would like both boys to be with us. We would like both of them to have a safe and happy life. WHAT IS YOUR MORAL ANSWER?

There is no issue. There is no controversy. No one who has not experienced or witnessed the "Sophie's Choice" brought upon our family should presume to decide for us, or to even consider withholding the only treatment that has kept one of our twins alive. THAT IS YOUR MORAL ANSWER!


Dr. Phyllis Klein

I am Matthew's grandmother. I am 96 years old, very much capable of speaking for myself and my family, and capable of speaking out against injustices done to people who are handicapped. Matthew goes to Judge Rotenberg Center.

Matthew had been in and out of hospitals and was unresponsive to positive reinforcements and only became worse from the medications he received. Finally, despite all attempts to keep him safe, he put his head through a spike and spent months in a hospital and had surgery to close his head. Judge Rotenberg Center in Massachusetts was the only place that was willing to take him from the hospital where he had spent more than five months. JRC is the only place where he has had a comfortable life for himself. Matthew would not be alive if it were not for JRC.

Matthew and children with problems like his who could not be helped in any other way, and who are now at Judge Rotenberg Center and doing very well, will certainly die as others have when they left JRC.

Our family is very happy with the life Matthew has at JRC and he tells us he is happy too. He travels with his family, goes out on day trips regularly with his school, and calls me on the telephone a few times a week and I speak to him from my home in New York City. I often visit him with other family members. We could never imagine unfortunate people like Matthew could have such a wonderful place to stay.

Those who have not had a child like ours should not talk about "Our Children" or presume to understand. You have never lived with our children or even talked to our family. THESE ARE NOT YOUR CHILDREN!

To the person that has written horribly biased statements I say: Deliberate sensationalized misrepresentation of Judge Rotenberg Center is false, possibly for your own personal greed. If these children are hurt because of your statements, you will need to live with your own conscience because other children have died when they left JRC. You know there has been no other treatment for them that has worked and that is why each case has been through an impartial court hearing that has determined that they must have this treatment.

To those people who write I say: JRC has been open for our unannounced family visits in the many years Matthew has been a resident there, and all the members of our family visit him frequently and regularly. My children and grandchildren who surround and care for Matthew and support his needs are trained New York State licensed specialists in the field. Matthew's sister, my granddaughter, Dr. Ilana Slaff, is a physician and psychiatrist with a specialty in autism. His aunt, Dr. Phyllis Klein, has specialized in the treatment and care of non-verbal multiply-handicapped children and adults since before Matthew and his identical twin brother, Stuart, were born. The boys were treated in early childhood at Columbia University where his aunt studied.

They have had the best of care we could get for them. My daughter Lorraine and her husband Myron have traveled and stayed in Europe for treatments to help their twin sons. They would have gone around the world for them; they would have gone anywhere for them and they did, and they continue to do so.

Matthew's identical twin brother Stuart has a similar problem, and to our misfortune he has steadily regressed as his behaviors deteriorated over time, despite every intervention that has been available in New York City where he lives. He is currently in an acute care hospital in New York City in diapers since bolting into street traffic. He has been there for more than 4 months because no facility will take him--we have begged New York State to have him transferred to JRC where his brother is safe and happy.

It is tragic that Stuart and many other children with similar problems, whose families have been desperate to help their children, are denied this life-saving treatment because it is not available in New York State. Many haven't survived. I worry each night that Stuart could die a horrible death because he does not understand that his self-destructive and dangerous behaviors could kill him.

From Matthew's and Stuart's distraught grandmother,
Grandma Pearl

This sounds like a very worthwhile cause. If anyone is interested, there's a site, wwww.toggin.com, where you can post your cause and have college students nationwide sign a petiiton in support of banning electric shock therapy It's a great way to raise awareness and gain support on campuses nationwide.