State Officials Respond to Mother Jones' "School of Shock" Story, Call the Judge Rotenberg Center "Inhumane"

REGARDING A DISTORTED PIECE OF WRITING AND OVERT OMISSION OF FACTS, CLEARLY BIASED TO SENSATIONALIZE FOR PERSONAL PROFIT AND GAIN ? WITHOUT REGARD TO THE FAMILIES WHO GIVE OF THEIR LIVES, AND TO THE INDIVIDUALS WHO GIVE OF THEIR HEART, TO CARE FOR THESE VERY SPECIAL NEEDS HANDICAPPED CHILDREN.

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, resides 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 new 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 in New York for having bolted into city street traffic because (as he tells us) a string on his favorite chair was displaced. 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.

We would like both boys to be with us. We would like both of them to have a safe and happy life.

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.

Dr. Phyllis Klein

REGARDING A DISTORTED PIECE OF WRITING AND OVERT OMISSION OF FACTS, CLEARLY BIASED TO SENSATIONALIZE FOR PERSONAL PROFIT AND GAIN ? WITHOUT REGARD TO THE FAMILIES WHO GIVE OF THEIR LIVES, AND TO THE INDIVIDUALS WHO GIVE OF THEIR HEART, TO CARE FOR THESE VERY SPECIAL NEEDS HANDICAPPED CHILDREN.

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, resides 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 new 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 in New York for having bolted into city street traffic because (as he tells us) a string on his favorite chair was displaced. 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.

We would like both boys to be with us. We would like both of them to have a safe and happy life.

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.

Dr. Phyllis Klein

This is the most disgusting story I've ever heard. I'd also like to know why legislators have been working on this for over twenty years without results. Something is rotten to the core in Massachusetts.

The people who treated these children with such cruelty ought to be locked up for life. I am incensed that the Rotenberg Center has been allowed to torture these children for so long. Whatever happened to the Eighth Amendment?!

Since Massachusetts politicians have done nothing for apparently the last twenty years to stop this atrocity, I've written Arlo Guthrie via his web site and asked that he get personally involved. I hope others will do the same. This is beyond belief.

For the longest time I have participated in various blogs that demanded action..from 9-11 to AIDS.
FINALLY it seems some results are to come from this, it was getting frustrating blogging my lil arse off and nothing was getting done....
Well now, Mother Jones has just changed all that!
Thanks MJ and keep up the good work, yall brought a tear to me eye :)

And for a fully formatted version of my response to Ms.Gonnerman's article, please see http://www.judgerc.org/ResponsetoGonnermanArticle.pdf
Matthew L. Israel, Ph.D.
Executive Director
Judge Rotenberg Educational Center

Individuals, for political gain, often overlook the truth. I, and members of my family have personally spoken to Ms. Millman and visited her offices. We clearly demonstrated to her that our child would not be alive today if he did not receive the therapy provided at Judge Rotenberg Center--intervention that is, and continues to be--COURT ORDERED, WITH PARENTAL CONSENT. After speaking with us she informed us her activity would not precede. Ms. Millman knows our child's life depends upon the COURT ORDERED intervention he receives. In the personal interest of furthering her popular political appeal, her words to the family of a handicapped child desperately trying to keep that child safe, apparently, do not matter to her.

With respect to the testimonial of "Phyloz", it is not realistically possible to make the claim that "our child would not be alive today if he did not receive the therapy provided at Judge Rotenberg Center". In actuality, the comment betrays a mind closed to evidence and desensitized to the suffering of the child. It would be reckless for an elected official to predicate public policy on the basis of statements such as this.

Like Phyloz, the statement by Dr Slaff has the ring of a rationalization for the decision to place her brother at JRC than a genuine post of information. The claim that 100 studies show the efficacy of skin shock would have more weight if it explained how such studies got past the ethical considerations of Human Subject Review Boards and that the claim was followed by an irrelevant, scapegoating comment about schools in Brooklyn not following IEPs.

I am Matthew Slaff's grandmother. I am 95 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. To the person that has written this horribly biased article I say: You have never lived with our children nor studied their conditions. THESE ARE NOT YOUR CHILDREN! Your deliberate sensationalized misrepresentation of Judge Rotenberg Center is false, possibly for your own 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 that same person who writes this article 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 after bolting into street traffic—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

Phyllis Klein et al, including Matthew Israel, must know that In Defense Speech (as posted in the comment directly above) off by heart, the number of times it has been used over the last year give or take small modifications at beginning and end to suit the recipient.

What may be the original (with an interesting end) can be found at:

http://www.judgerotenbergcenter.org/Klein_VV.pdf

When did the terms "Court Ordered" and "Parental Approved" replace the term 'Science Based Evidence' as the criteria to measure the safety and efficacy of electrical shocks on children and young adults where it is already unlawful to do so to the most hardened of criminals?

Would the Court who approved JRC's treatment consider that it is now acceptable to use that treatment on criminals?

Replacing one bad practise / choice with an equally bad one does not excuse either. There are other options. Obviously - it is a very small minority of the children with similar behavioural problems who get to JRC, and JRC is the only place in the US, and possibly in the world, who are approved to use a method found to be repugnant and against human rights in prisons and in the rest of the Western World.

The approval JRC do have is by a judge in a court of law rather than by experts in behavioural problems. The law should be upholding justice, not protecting a man who shames the title of 'Doctor' by running a center committing gross and unjust abuse on the vulnerable. Money talks.

Appalling.