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Testimony on Matthew's Law
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Email from Rick Tallman dated January 19, 2003 (Used with
On Thursday (January 16, 2003) the New Jersey State Assembly held hearings on a bill (A2855) known as "Matthew's Law". The bill was intended to eliminate the use of restraints and aversive techniques in facilities for persons with development disabilities. Below is my testamony regarding the issue. Following that is statement of the bill that was approved (A2849), known as the "Committee Compromise Bill".
Chairwoman Weinberg, Chairman Paine,
Vice-Chairman Conaway, Vice-Chairman Cryan
Thank you for this opportunity to express my views on this important issue.
On May 11, 1993 our youngest son Jason was placed in a residential treatment facility in Pennsylvania. The following evening when I got home from work our oldest son told me that the facility had called and said that they had a problem with Jason and that I should call them back. They forgot to leave a number. About an hour later, I got a second call from the facility. The person said that Jason had been involved in an argument in the dining hall and they had restrained him and that he had 'passed out' and they had sent him to a local hospital and we should call there to find out any further information. (I found out later that the person who called was the person who had restrained Jason.)
When I called the hospital, I found out that he had not 'passed out'. His heart had stopped. He was airlifted to Children's Hospital in Philadelphia where he died on May 13th. He was 12 at the time.
It was not until the following week, when the Philadelphia medical examiner declared the death a homicide that the police were notified. One of the people involved in the restraint was tried for involuntary manslaughter, but acquitted. The jury felt it was an accident. A civil case against the facility was settled out of court in 1996.
When we settled our civil suit we were under the impression that ours was a unique situation. In fact, the attorneys for the facility even stated, "at least we know that a tragedy like this will never happen again."
Shortly after that a friend from Connecticut told us of the Andrew McClain case. That case led to the Hartford Courant's special report on restraint deaths in October 1998, which detailed 142 deaths as a result of restraints. Since then I have documented a total of over 200 people dieing as a result of being restrained. Many of these are children under the age of 20.
In December of 1998, another youth aged 14 died at the same Pennsylvania facility after being restrained. Ironically, this young man lived in Toms River, about 20 miles from where we live. This time, the county prosecutor decided not to press charges. He didn't want to lose another case, and he felt it would adversely affect the employment possibilities of the people involved. In fact most cases of death by restraint are ruled accidents.
As I further researched the issues of restraint, In addition to documentation of over 200 people that have died as a direct result of restraint, I discovered that these same techniques are used in some schools for autistic children. It is called therapeutic restraint. This worries me greatly. One of our other children, David age 26 has autism. Right now he lives at home and attends a day program, but at some time in the future he will be in the care of someone else, and my wife and I are concerned that he could suffer the same fate as his brother.
The first instance I learned of in which restraint was used in a school environment was that of a ten-year-old girl with autism in Massachusetts. Restraint was being used in the classroom to correct what was considered inappropriate behavior was. She was placed in a face down floor restraint for not blowing her nose the way her teacher felt she should. Her parents have since placed her in a private school for children with autism. I have since heard of many other similar cases.
I have found many other events in which children with autism have been traumatized by the use of restraint.
Recently I attended a conference for disability organizations at which one of the best-known schools in for children with autism in New Jersey distributed a handout opposing the passage of Mathews Law.
This handout starts out by saying Throughout the history of services to children and adults with autism, for every proponent of one theory or practice, there are individuals vehemently opposed to such theories and practices. Often times these individuals hold lofty positions in universities and advocacy organizations and offer their options without understanding the learning and behavior challenges of individuals with autism.
In the 1950s Dr, Bruno Bettelheim, head of the Orthogenic School for emotionally disturbed children at the University of Chicago, published articles on autism. He focused on how the lack of parental love and acceptance caused Autism. He had a big presence in the media, which helped to disseminate the Refrigerator Mother theory throughout the American mindset.
Dr. Bettelheims theory prevailed for the next two decades, putting autism research on hold for over twenty years.
In the 1940s a procedure was developed that was widely accepted. In fact, in 1949 Dr. Antonio Moniz was awarded the Nobel Prize for medicine for his research in the area. That procedure was called a lobotomy.
The handout continues with the idea that families and individuals with autism must have the freedom to choose the services they feel are most indicated for their children or themselves. and continues that This freedom of chose is the hallmark of American culture, and the foundation of Americans pursuit of happiness.
The last I heard, polygamy, human or animal sacrifice is not allowed as freedom of chose or pursuit of happiness.
The handout suggests that restraints and aversive techniques are often the only option and that those opposed to their use offer no alternative treatments. They are not the only option, and alternative methods do exist. Many schools and facilities do not use them and still have a very high rate of success in teaching people with autism. Alternative treatments must be made available because if the only tool you have is a hammer, you tend to treat every problem as a nail.
The handout claims that people with autism do not respond to reward systems or positive reinforcement, therefore, restraints and aversive techniques must be used. If, in fact, they dont respond to rewards or positive treatment, why would anyone believe that they would react favorably to negative treatment?
Surely something must be done to prevent someone from hurting themselves or others. We would want to stop anyone from running out into a busy street or from climbing out a window. But why use a different technique just because someone has autism? The idea of hold them down till they calm down rarely works. First of all it is demeaning to the person, second and more important, it can and has killed people. A prone restraint or a basket hold places pressure on the chest and abdomen making breathing difficult. No one is going to calm down if they are having a problem breathing.
Restraint is an easy way out of a situation that can very quickly become overused and abused. The facility were me son died changed procedures shortly after his death. Shortly before the second child died there, they had told the vendor that developed their new procedure that they had used his technique over 30,000 times without a fatality or serious injury. Thirty thousand times in a five year period averages out to sixteen times a day.
When a tragic event occurs as a result of restraint the victim is referred to in the media as autistic, or a troubled youth or a kid in crisis. This seems to place these children in a different category and somehow make the world see the event as less of a tragedy because they were problem children.
In conclusion, let me remind you that the most recent pictures of my son Jason and of Matthew Goodman were taken by a medical examiner.
The "Committee Compromise Bill" summary:
This bill is intended to reduce the use of physical and mechanical restraints on persons with developmental disabilities and provides that physical or mechanical restraint may be used as an emergency procedure but shall not be used as a planned intervention in an individual habilitation plan unless:
-- the interdisciplinary team determines that less intrusive techniques have not been successful in protecting the person or others;
-- the use of the physical or mechanical restraint has been reviewed and approved by a human rights committee; and
-- there is informed consent from the person or his legal guardian.
The bill also provides that the use of mechanical restraint as safeguarding equipment would require a prescription by the person's treating physician or another licensed physician.
This bill does not change very much. It still allows restraint and aversive treatments. The statement "there is informed consent from the person or his legal guardian." really leaves a lot to be desired. Most parents or guardians will only recieve information from advocates of aversive treatment programs.
The most interesting part of all this is that the "compromise" bill was submitted before the original.
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