DR. CHILDRESS: Mrs. Beverly Post?

Thank you for joining us today.

MRS. B. POST: Thank you for having me.

I am Beverly Post, Highland, New York. When I lived in Maryland I was co-president of the Alliance for the Mentally Ill. I was co-president of the Alliance for the Mentally Ill of Anne Arundel County and it was at that time our son was a research subject at the Maryland Psychiatric Research Center.

He was there for two years. We had been led to believe that we would find answers for his unclear diagnosis. We know now he should have been excluded from being admitted because (1) he did not suffer from schizophrenia and (2) I had informed them of a previous severe reaction to haldol, which they said would have excluded him. I have just found that out.

He suffered more at Maryland Psychiatric Research Center than ever before or since. His condition deteriorated badly. Despite my warning he received haldol. It resulted in a dystonic reaction requiring emergency surgery intervention.

Against my vehement objections he was subjected to amphetamine to be administered intravenously on three different days. The third session was canceled due to his extreme reaction.

Spinal taps were also performed. Why? Spinal tap is quite painful, I know. I have had two for medical reasons.

Another test used Apo morphine injections causing bizarre behavior.

Growing up no one had ever hit our son but a staff member severely blackened his eye when he did not respond quickly enough to picking up books. I have his statement which was notarized of what happened at the time.

Asbestos was discovered in the building where the unit was located. After seven months of exposure to asbestos a previously condemned building was used. This was D cottage. Research was at a stand still and lacked facilities for protocols to be carried out.

It took me two years to get his records, to get those protocols, and I had to get a lawyer to help me do it. I did not know at the time what was going on.

It was while in D cottage that the male patients were illegally subjected to the humiliation and cruelty of what is called "Charm School." They were tied in chairs from 10:00 o'clock until 3:00 o'clock. Some more loosely than others. They were not able to leave the room. Lunch was brought in. No books. No music. No TV or writing materials were allowed.

What was the purpose of this dehumanizing experience? Imagine if you can the effect on our son. He is musically gifted and he is a compulsive writer. I called the doctor twice to tell him that this was against Maryland law HB-1314 regarding restraints. I had lobbied to get that law passed. Ironically my son was now being illegally restrained. I was ignored.

I did not know what to do. Finally a consumer advocate who learned about the situation reported the abuse to Dr. Carpenter and the State's Patient's Rights Advisor who sent in the Spring Grove Rights Advisor on a surprise visit to investigate. An immediately stop was put to Charm School.

After they moved to the new quarters I was called in and told my son was being discharged. He was stable and then going out to a day program. Suddenly for no reason his medication was changed. He came apart at the seams. In a panic his low dose was tripled. I never found out why. Just that it was a team decision.

When we left MPRC he was broken physically and mentally. He had been exposed to and acquired a positive TB test there. He had been a nonsmoker when he entered. He left a chain smoker. He has developed an allergy to tobacco causing him to be rushed by ambulance to the hospital for treatment of severe bronchial spasm.

He is still bitter about his experience there.

He has now been correctly diagnosed at three different institutions, Johns Hopkins, University of North Carolina and Westchester Institute for Human Behavior. He is a high functioning artistic person. He receives services from the Developmentally Disabled Office.

It concerns me greatly that the animal activists can protect the lower forms of life from inhuman research but thus far little has been said about human guinea pigs.

This is an article, a study in which my son was used, published by the doctors at Maryland Research Center. Two years of his life were lost there. I will never get over my guilt for encouraging him to go there and for ignoring him when he wanted to tell me to go to another hospital.

Thank you for listening to me. I hope this will help in the future. I cannot help my son. The past is gone. But I hope maybe others can be helped with better regulations and monitoring. Research needs to be done. I know that. But it can be done differently.

DR. CHILDRESS: Thank you for sharing this important story and also for the recommendations you made.

Are there any comments or questions?

Alta?

MS. CHARO: Yes. Ms. Post, I am trying to understand how this can have happened. It is the second story we have heard now about the same facility. These questions may not be things that you can answer but do you know if this is a private facility or a state facility or part of a university?

MS. POST: I am sorry. I cannot understand the question.

MS. CHARO: Is it that you cannot hear me or -- I am trying to understand what kind of institution this is? If it is private? If it is part of the state health department or if it is part of the University of Maryland?

MS. POST: Maryland Psychiatric Research Center at that time was under Maryland University but it was on the grounds of Spring Grove hospital so it would be served by Spring Grove hospital by the space they used, by the meals that were brought in. But, yes, it was the University of Maryland because Dr. Monroe at that time was head of everything. Dr. Talbot now holds that same position.

MS. CHARO: When your son was admitted to the unit were you under -- did you have the understanding he was being admitted for therapeutic treatment or as part of a research protocol?

MS. POST: My understanding was we do not have a clear diagnosis. Here he will get PET scans and MRI's. We will do all kinds of testing and we will maybe even give him a trial of new medications. Nothing helped him. Nothing will have helped because he is artistic. He is not schizophrenic. He is a bipolar. I did not know that then. I know it now.

MS. CHARO: Thank you.

DR. CHILDRESS: Thank you very much.

Our next speaker --

DR. BACKLAR: I am sorry, Jim.

DR. CHILDRESS: Sorry, Trisha.

DR. BACKLAR: I just wanted to make the point, this is not a question, that both Ms. Becker and Ms. Post made that at the time that you thought your son had schizophrenia and that both of you said that you felt very guilty about having done this.

I think one of the issues that we do not address here but we will be taking into account in terms of families and care givers is that often people do not know what to do when they have a relative who has a serious mental disorder and attempt to find care in a research protocol.

DR. CHILDRESS: Thank you, Trisha.