Difficult Reading on Recent Topics: the JRC, John Odgren
March 6, 2007 by Kristina Chew, PhD
Filed under Crime, Disability Rights, Safety, Treatment
Only the most recent comments made on this blog appear in the sidebar to the right and I wanted to highlight two posts, both on topics that are not the easiest to read about, but which contain comments of note.
- Aversive Stimulation, Improper Behavior, and the JRC (February 20, 2007) was recently commented on by Greg Miller, a former teacher’s assistant at the Judge Rotenberg Center, and by Phil Schwarz, who is the Vice President of Asperger’s Association of New England.
- Shame and Stigma: On what happened on January 19th (January 27, 2007) was recently commented on by a relative of John Odgren, J. Odgren.
At the end of a post from a few days ago, On violence, suffering, horror, and hope, I wrote this, which I wanted to note again here with a small revision:
Sure we hear a lot, even too much, about violence and autism: But I think we need to continue to talk about these issues so that others who do not have the chance to be (as I am) raising a great kid named Charlie —- so that those who think that life with autism is full of tragedy and is depressing —- can see that there is a lot more to autism then suffering and horror.
I hope always to emphasize that where there is autism, there is plenty of hope, plenty of light.
Jeff Stimpson
Jill Cornfield
Yes , good point Kristina…There IS plenty of hope and light..
Just last night Mark had a terrific melt down. He has never been self injurious, however he will lash out and bite kick etc…
Well he went up to his dad and gave him a big head butt in the jaw .
I grabbed him as poor Dad sat down nursing his very painfull jaw.
Mark is quite strong, and so am I(doing weights certainly helps) As I was holding his arms, his movements were somewhat restricted, not so his mouth however. He lunged at my leg and I copped a big bite that drew blood.
It was all over in half an hour..
Fortunately these sessions,though they may be quite intense, are usually of a short duration.
Afterwards he is soon all smiles again, wanting to listen to Carly Simon.
It’s as if nothing has happened.
I do notice that these meltdowns seem more often to occur when he cannot have his own way.
But you know, the good times far out weigh the bad. His happy smiles and giggles. Rocking together to music (sitting on the sofa), dancing, walking to school together holding hands. The look of joy on his face when I pick him up from school. Just a few examples..
Sure there are difficult times. But, we also have THEM with our daughter too, and she is not autistic..
In fact Kristina, I had almost forgotten about that bite until I read this piece of yours!
Thanks for reminding me…. LOL!
Thank you, Kristina, for updating us on this.
I hope everyone signs the Odgren petition. I’m not sure if it will do anything, but we must not/cannot stand silently by and let another injustice occur.
It’s important to follow these cases. The big lump in my throat and the sadness of my soul prevents me from adding anything else at the moment.
This article from the March 6th Boston Herald is about James Alenson.
Kathy: We’ve been through some tough moments just as you describe. I’ve struggle to learn how to steel myself to stay calm—being upset when Charlie is upset certanly does not help. I always that Charlie is trying to communicate something and we have to figure it out.
Yes, but there is always much more light than dark—-and light shining through the dark.
I’m missing something (maybe it’s just late at night), where is the Odgren petition?
Here is the link:
http://www.care2.com/c2c/share/detail/313892
(I am posting this for Derrick Jeffries—kc)
Please read all of this very important email, and then circulate it far and wide if you agree with it’s purpose. This is a revised version that follows the ABC Primetime episode about the Judge Rotenberg Educational Center that aired on February 20, 2007.
The purpose of this email is to inform concerned individuals about a judicially protected facility that is blatantly violating the basic human rights of severely challenged or disabled individuals. Many of the residents of the Judge Rotenberg Educational Center http://www.judgerc.org are people with Autism, some of whom are non-verbal.
The Judge Rotenberg Center’s main location and administrative offices are located in Canton, Massachusetts, and it’s 50 other residential homes are located in several cities in Massachusetts. The director of the JRC, Matthew Israel, was a student of the late B.F. Skinner, a psychologist who was a strong proponent of behaviorism, who formed many of his beliefs from experiments with animals. http://www.infoplease.com/biography/var/bfskinner.html However, Israel departs from Skinner’s teachings, in that Skinner believed aversives (described below) should be limited to extraordinary or emergency situations and not for standard training, while Israel relies upon them predominantly for many of his students.
The JRC uses level III aversive techniques to alter or suppress self abusive behaviors, or any other behaviors that staff members deem as uncooperative or unfavorable. Aversives used at the JRC, which was formerly known as the Behavior Research Institute (BRI), may include: spanking, pinching, forcing to eat taste aversives (vinegar mix, jalapeno peppers, hot sauce, etc), withholding food, forcing to smell ammonia, spraying water to the face, forcing to listen to static noises through specially designed helmets, and their trade mark method, the use of the Graduated Electronic Decelerator (GED), which simply put is a shocking device that delivers a jolt to the student/patient of up to 65 volts of electricity through remote control. These aversives are sometimes administered while the patient has their hands and feet restrained.
Two deaths at the Center raise serious questions regarding their methods. 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 which 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. http://normemma.com/lcorneli.htm
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.” 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.
It should also be known that the Center imposes a diet upon it’s student population that is high in wheat and other grains that have high gluten (a protein) content. Many parents and experts will very quickly point out that gluten, and also casein (a dairy protein) cannot be properly digested by some people with Autism. The result of eating such foods will often lead to hyper-active, uncooperative, or confused behaviors. The demonstration of such behaviors would undoubtedly lead to aversive treatments being applied to the students, yet the Center’s, and Dr. Israel’s philosophy is not concerned with the cause of behaviors, only the cessation of them.
Many foes have arisen to oppose Dr. Israel’s continued use of level III aversive treatments. The Massachusetts Office for Children failed to stop him in 1985. Since 1986, the Massachusetts legislature has been unable to ban their usage. Throughout most of the 1990’s the Massachusetts Department of Mental Retardation was also unable to stop the aversives. The courts have continuously favored the Center. Matt Israel’s cause is also supported by a troop of parents who will always favor keeping their children’s behavior subdued, rather than seeking out treatments that focus upon identifying the causes and meeting developmental and other needs.
In 1994 Eye to Eye with Connie Chung attempted to expose the JRC, but Connie may have found Dr. Israel to be far more clever than she was prepared for. Please click on the following link for more details: http://query.nytimes.com/gst/fullpage.html?res=9805E4D7103DF933A15750C0A962958260&sec=&pagewanted=all
Currently, New York Senator Martin J. Golden has introduced Senate Bill 6876, which if approved by vote, will prevent New York schools from sending students to the Judge Rotenberg Center. If you live in the state of New York please email, phone or write your local state senator and plead with them to pass this bill. Here is a link to the text of the bill: http://assembly.state.ny.us/leg/?bn=S06876&sh=t
This link will allow you to track the progress of the bill: http://assembly.state.ny.us/leg/?bn=S06876
You will find email addresses for New York Senators at this link: http://www.senate.state.ny.us/Senatorbio.nsf/Public_MemberEmail?openform
Here is a link for contacting lower house members by email: http://assembly.state.ny.us/mem/
If you are not a New York resident, it may still be worthwhile to email your concerns. You may also want to investigate whether your state is sending children to the JRC. If so, please contact them and remind them that the aversive therapies used by the JRC may violate the Individuals with Disabilities Education Act, which requires an extensive focus on positive behavioral interventions. Please contact the Federal Department of Education with any complaints through this link: http://www.ed.gov/about/offices/list/oig/hotlineform.html?src=ct
It may also be helpful to contact the Food and Drug Administration (FDA) and demand a re-evaluation of their registration of the Graduated Electronic Decelerator (Shock Device), which is manufactured by the Judge Rotenberg Education Center, Inc. It’s registration number is: 1222743, and it is classified as an “Aversive Conditioning Device, FDA regulation number: 882.5235. Please inform them that this device is being used on individuals with severe forms of Autism who may be completely unable to associate the reason for the pain (shock) with their behavior. They may also suffer from sensory related issues that increase their pain level far beyond what a typical person may experience. Even the aversive shock testing that Dr. Ivar Lovaas performed on people with Autism did not reveal any lasting learned benefit. This fact alone should clearly reveal that the GED is not a suitable “conditioning device,” since it’s effect is quickly lost once the device is no longer employed. This reality makes it evident that the so called “conditioning device” has become an ongoing cattle prod or dog collar, which produces only pain, with no educational benefit. There are other non-invasive treatments that are proven to have long term benefits. Please email the USFDA Center for Devices and Radiological Health at this link: mailto:dsmica@cdrh.fda.gov , or write to them at:
FDA/CDRH/OCER/DSMICA (HFZ-220) 1350 Piccard Drive Rockville, MD 20850-4307 U.S.A
Phone: 1-800-638-2041 or 301.443.6597
Be sure to specify the GED’s registration number. It should also be noted that this device is NOT FDA approved. It IS FDA registered. If anyone finds references to claims of FDA approval, or has heard Dr. Israel make claims of it being approved, they should immediately report this to the FDA.
In conclusion, I want it to be known that this message was originally written by a person who has Asperger’s Syndrome (A milder form of Autism), who chooses to remain anonymous. My sister is severely effected by symptoms related to Autism, and has been in institutions for 38 years of her life. I have personally seen many cases of self abusive behavior within the hallways of these institutions. With all that I know, and all that I have seen and felt, I would never send my sister to such a place as the Judge Rotenberg Education Center. My little boy is also diagnosed with Autism. He is the most beautiful and innocent person in the world to me. The idea of someone purposefully shocking him under the guise of medical care infuriates me. Please read, hear and feel my words as being alive and full of empathy for my fellow friends who live with Autism. Yes! It is possible for a person with Autism to have empathy!
At the time of writing, this letter is being witnessed by members of the Autism community, including people with Autism, parents of children with Autism, and professionals and advocates who respect and care for people with Autism. Included in these paragraphs are the collective thoughts and feelings of many of us who sincerely care about how people with Autism are treated. Permission is granted to distribute this document for positive advocacy purposes. Permission is not granted to make alterations. However, I will permit notations to be added to indicate outdated portions of the text, or to explain the outcome of a legal decision, or other needful clarifications, as long as they are accurate, clearly identified as notations, and they must not detract from the purpose of this document.
Thank you for caring!
5/25/06
Hopefully this will post.
Please note that the previous letter is not completely up to date. I will post an updated version as soon as possible.
Thanks,
Derrick
Derrick, Thank you so much for posting this. I have to do some thinking and sit next to Charlie before responding more.
After all he was obsessed with, he got confused with the fantasy and reality of life. Why would any individual human being with Autism have the possible intention of becoming a criminal and even looking like a criminal? His mind is inept, just like Rain Man. For instance, times when your unable to obey the cross walk sign, and times when your unable to realize that killing is wrong. How do they compare? It all depends! This young man didn’t realize what he was up against.
Are you kidding me? You want this murderer tried as a child, so he can be out in a few years? He needs to be tried as an adult!