DEAF WATCH----MAY 1998 Greetings Everyone! Again this month is "Mental Health Month", and comparatively speaking, to us this is similar to Halloween. The psychological industry for many years have been like our prison wardens. Recently there has been minor improvements in how they deal with Deaf consumers in many areas. However some areas still has Deaf people languishing in squalid environments or has Deaf people living w/o any language or means to communicate. We must find them and liberate them using whatever means possible. Starting exactly a year from now, I will launch the Orange Neptune Project which will be similar to "Search and Liberate" operations. This is not going to be a website project. This is not going to be an educational project. I will be assembling a group of volunteers who will canvass the mental institutions for Deaf people that want out and to try liberate them through legal maneuvers. Hopefully by the end of this year I will have a lineup of volunteers and plans laid out. If anyone is interested in becomming a volunteer, please let me know. Interested persons may apply at the Orange Neptune page of our website. This is set to be a giant project and I will need a lot of help. I am confident that Project Orange Neptune will have a thunderous effect on the psychology community. Soon as you go down on this newsletter, you will read several accounts of misdiagnosis, lack of effective communication, and neglect of Deaf consumers and some are quite graphic stories. Dont let it happen to you, or your relatives. On the Deaf Health Resources page of the Deaf Watch website is a large collection of links to mental health resources. As long as psychological diagnosis is opinion based without scientific backing, there is plenty of room for social politics, misdiagnosis, mistakes, and this usually results in the loss of freedom for innocent Deaf consumers. Finally as this newsletter is being released, thousands of disabled people are marching the Million MAD March in Washington D.C. in protest to forced psychiatric drugging and for equal treatment in hospitals. Deaf Watch Newsletter commends the disabled participants for joining this protest. The Editor ************************************************************* DEAF CONSUMER PSYCHOLOGICAL HORROR STORY #1 This is one of my greatest horror stories. I have changed the name of the person, the facility, the area (used just a generic area) to protect *myself* . But, this is very true. Many Years ago, I worked in a health center in one area of the New York City metropolitan region.....this health center was in New York City itself. I had a contract between my audiological services and a local (New York City/State) agency serving the severely mentally retarded/developmentally disabled population. By law, these clients had to have annual hearing screenings. One client was brought in for his annual audiological (hearing) screening. However, prior to seeing "David" (I'll call him), one of the agency's speech-language pathologists (a very aggressive, concerned individual) spoke with me. She felt that David was smarter, and more intelligent, than all of the other adult clients she served for speech-language problems. Her service was to teach David sign language (at least functional signs) and she noted that he was putting together sentences, and giving higher level responses in sign than would be expected. Background on David: He was in his early 50's (age) when I saw him. He had been diagnosed as severely MR/autistic as a child, and was placed in a well known New York City institution for the mentally retarded/psychiatric patients. Some of you may remember that because of scandals at many of these sites, they were either closed or carefully scrutinized, and many (as the SLP called them) "inmates" (actually residents of these institutions) were released into neighborhood housing - and followed by agencies. David was one of these clients. (Note: As the SLP stated to me, they were treated as if they were in prisons, actual,like psychological and sociological prison, that many professionals in the agency referred to them as the "inmates" as opposed to those clients who were never in such institutions.) OK, back to David. Reminder: David as all clients of the agency had to have annual hearing screenings. I looked over his previous record, and found that he never had a complete screening of his hearing, he was seen by a licensed, certified audiologist from a different (yet affiliated with the health center) hospital facility. The previous audiologist's comments (annually) was CNT = could not test....unreliable.....but, informal assessment indicated non-responsive to sound due to autistic behaviors and related autistic factors. OK, so, sign language was to be offered to this adult. He had no means of formal communication and had been institutionalized for at least 40 years with no services provided and no communication skills developed. My evaluation, I used every method of gestures, signs, etc. to communicate with David to explain the hearing test. I also decided not to screen his hearing but to test him completely. This was accomplished through earphones for speech awareness, and sound awareness. Interestingly, I was able to obtain consistent and reliable responses at levels indicative of a bilateral severe to profound sensorineural hearing loss. David was asked to return for a follow-up audiological test one month later in order to verify the reliability of these results. They were essentially the same (within acceptable clinical allotted differences). David was then tested objectively with electrophysiological measures (first complete AR testing which indicated absent reflexes at all frequencies tested 500 - 4000 Hz up to 110 dBHL). and vi ABR which confirmed no ABR results up to the max. of the equipment which was 90 dBnHL - Note ABR at that time was only for the high frequencies where he had a profound loss. Based on these results, I ordered two hearing aids for David. The State approved a monaural fit, and he was fit with one hearing aid (I forget which ear). Immediately, he was responsive to sounds in the environment, including calling his name. Now, he did not understand the meaning of these sounds, but he heard them, and they were usable, and he could be trained to be aware of sounds. 6 months post -hearing aid fitting, David came back for followup. (He also returned one year post for his annual). But, at 6 months, he was more aware of sound than ever expected, could localize by turning his head., and demonstrated significantly no autistic like behaviors. Within that time period, he was given a program of auditory training, along with continued sign language development as his means of communicating. (At one year, he was vocalizing, although it would best be called almost babbling, not really language or speech, but responding to sound...he made sound). OK, what else. In the interim, I kept in touch with the SLP. I brought up how the Dx of MR was made ? She had no idea, and the records of entry in the care of the agency showed no recent psychological eval. (He had been previously diagnosed as MR/autistic - and this was accepted by th agency.) So, we did get the agency's psychologist to agree to a reevaluation using only non-verbal methods for testing - this was done to declassify him as autistic and reclassify him as MR/Deaf. Results of the non-verbal IQ tests placed David at the borderline/normal range (79IQ). Considering the fact that he had no real stimulation (training, formal stimulation) it is amazing that he had the ability to complete the non-verbal or performance parts of the WAIS at the 79IQ level. Thus, our conclusion.....David was a young deaf child who was misdiagnosed by the psychological/psychiatric community as retarded and autistic. For his 50+ years of life he was denied access to sound and to a communication method which could have developed higher intelligence and literacy. He could have become a contributing adult (working, providing some job skills for society). Instead, he has been a financial burden to society, and has been denied the rights to a true "pursuit of happiness" as stated in our constitution. (Contributed by an anonymous doctor) ************************************************************* HORROR STORY LINKS TO CHECK OUT: "DEAF and DAMMNED" - Artie Martinez's story. http://www.phoenixnewtimes.com/archives/1996/100297/feature1-1.html "DEAF MAN ENJOYS LIFE AFTER DECADES OF HELL" - Junius Wilson's story. http://207.179.44.6/96/FEB/03/twr/02234249.htm ************************************************************* U.S. DISTRICT JUDGE BLOCKS FLORIDA FROM ENFORCING THE BAKER ACT. MIAMI -- U.S. District Court Judge Frederico A. Moreno has permanently blocked the state from enforcement of a Florida statute that exempts certain medical records from disclosure to patients. The court held that those provisions discriminate illegally against the mentally disabled in Florida last December. The landmark ruling came in a lawsuit filed by The American Civil Liberties Union Foundation of Florida, Inc. and the Advocacy Center for Persons with Disabilities. The lawsuit -- Chris Doe, et al. v. Dr. Carlos Stincer, et al. Case No. 96-2191-CIV-MORENO -- was filed by the ACLU in 1996 after the Florida Legislature enacted a statute that exempts hospitals from the requirement to disclose to patients certain records of treatment for any "mental or emotional condition" at health facilities. The statute was designed specifically to restrict patient access to records of their treatment when they have been involuntarily hospitalized under Florida Statute Section 394.4615, commonly known as the "Baker Act." Copies of all other medical and insurance records at hospitals generally must be provided upon request to discharged patients. The U.S. District Court held that the exemption for records of treatment for a mental or emotional condition improperly discriminates against the mentally disabled and is prohibited by the Americans with Disabilities Act, a federal civil rights statute that prohibits discrimination on the basis of a disability. "This decision is an important step in opening up all medical records to private citizens in Florida," said James K. Green, a cooperating attorney for the ACLU of Florida. "One of the most dangerous aspects of this statute was that it was an attempt to insulate hospitals and doctors from scrutiny for involuntarily committing patients under the Baker Act." Ellen Saideman, an attorney with the Advocacy Center for Persons With Disabilities, noted that the "victory also firmly reiterates that state laws are subject to the federal Americans with Disabilities Act, and may not discriminate against the mentally disabled." The ACLU said that the decision appears to be the first in the nation to hold that the Americans with Disabilities Act prohibits a state from excluding psychiatric records from the same type of disclosure required for other medical records. ************************************************************** DEAF CONSUMER PSYCHOLOGICAL HORROR STORY #2 I did not see all of the original post - but I am happy? to pass on stories. They did not take place where I live now (Nanaimo, BC). I do not know why you are collecting these and so I will provide sketchy details. I met a boy wearing and FM. I had worked at a school for the deaf (McKay Centre in Montreal) as a teaching assistant so recognized the FM. I commented and another teacher (I was a teacher by then - but not a TDHH) told me to talk to the boy's Tr. She was pleased to meet me and said she knew nothing about the Fm, deafness, etc. This was in the far North and the boy got next to no attention. I looked into it because I was concerned. It turns out the mom didn't even want him to go for any testing in the South because of her past experience. She had a daughter. The girl was diagnosed as MR and was sent to live in an institution. This is a First Nation's family and that adds to the horror they have experienced as a People. I don't have the clear details - but some doctor saw her and thought something was odd. She ended up being adopted by this doctor and his wife (more strangeness when she had a family - but that may have had to do with prejudice, etc.) Yes, she was Deaf. But the story is that she had lived with the MR so long that she "acted" like them ..... So, this mom was afraid she would lose her son if she let him go away from her to see "specialists". She was told it was only for testing to help develop a programme for him - but who could blame her reticence? Story #3 A mother takes her 2 y/o to see the doctor because something is "not right". The mom has two older boys. Mom thought it was a hearing problem. Over the years (2 and 1/2) she sees a number of different doctors, etc. She told me they said the girl didn't talk because: - she has older siblings and they are talking for her - she is mentally handicapped - she is just behind for her age; she'll catch up - someone intimated child abuse! - one doctor did the "tuning fork test"; the child turned her head so she hasn't got a hearing problem - you're a mother; mothers are supposed to worry. Go home. Probably more ... I don't know how, but when the girl was 4 1/2 she finally ended up in the hands of an audiologist. She had a moderately-severe to severe hearing loss. She got hearing aids. She started making noises, etc. and her face lit up when she figured out SHE could make the noises. When I first met the child i saw her sit on her grandma's knee, look up into grandma's face, and move her mouth - imitating speech patterns. She knew people moved their mouths ..... I taught her basic signs (the hearing aids were not ready - molds etc.) and the mom took classes. She was enrolled in a pre-school - she had to travel hours three times a week... I moved away but kept track of her. 6 years later she is in school. She has a full time interpreter (fully qualified). She is doing well - not great but ok. She uses her speech most of the time, but it is not clear to most people. I have taught Deaf kids in the past. I am no oralist, but I also believe all kids should have access to everything that will help them communicate. I think teaching hard of hearing kids to sign is a smart thing to do (and encourage my parents to do so). This girl missed the most important stages of language learning because no one gave her a hearing test. At 2 and 1/2 she could have started signing AND using hearing aids. At 4 1/2 she was already behind in both. No need to go on. You get my point :-] Take care. Good luck. Cindy ************************************************************* DEAF CONSUMER PSYCHOLOGICAL HORROR STORY #4 I am not deaf but have worked in the mental health setting for 4 years. From time to time we receive deaf patients. so far from what I can tell there have been no misdiagnosis. However, one major problem that these deaf patients face is the lack of interpreters and support in the hospital. Many times interpreters are not provided..many times I was asked to interpret. which I declined..my job was admissions counselor..not interpreter. Although I am fluent in Sign and am graduating with My BA in interpreting...I am not certified and refuse to interpret. I only believe in RID interpreters should work in the medical/mental health field. Another issue besides interpreters..is that these patients have no one to talk to. They go to groups and therapy session..hopefully with an interpreter..but what about the socialization and interaction that these individuals miss out on. I don't know what the answer is or the solution to the problem but it seems to me there could be more done to accommodate these patients. There needs are different and should be met. I do recall one incident when a deaf patient was put in four point restraints for pretending to hang himself..all he did was put a strap around his neck and act like he was hanging himself..he did this to get attention and make us laugh..the nurse got angry and ordered him in restraints, the problem was, it is the law to explain what is happening but she would not allow me to explain to him what was happening and why he should not pretend to do that. Actually an interpreter should have been called. It was terrible and I felt defenseless as well as the patient feeling that way. Just thought I would share my story.. Cindy ************************************************************* RESOURCE OF THE MONTH: Justice In Mental Health Organization (JIMHO) advocates for the rights and dignity that all people suffering from mental or emotional illness deserve. Justice in Mental Health means justice within our lives. Justice in family, housing, employment and our social lives, with civil and legal rights as well. Our motto, "Gentle Justice," has taken JIMHO far as an organization in helping to secure dignity and respect for mental health consumers. This agency serves Michigan consumers. Contact Information: Justice In Mental Health Organization 421 Seymour St., Lansing, MI 48933 Fax (517) 371-5770 (http://members.aol.com/jimhofw/jimho.htm) Project DOORS (517) 371-2266/2221 jimhojim@aol.com Drop-In (517) 371-2794 jimhops@aol.com Project Stay (517) 371-4661 jimhops@aol.com Fairweather Project (517) 485-2592 jimhofw@aol.com ************************************************************* Disability Lawsuit List. EEOC REACHES GROUND BREAKING ADA SETTLEMENT FOR DISCRIMINATION IN LONG TERM MENTAL HEALTH BENEFITS The U.S. Equal Employment Opportunity Commission (EEOC) announced a ground breaking settlement of agency litigation against Israel Discount Bank (IDB) of New York under Title I of the Americans with Disabilities Act (ADA). The lawsuit charged IDB with engaging in disability-based discrimination by offering a long term disability (LTD) policy, insured by Metropolitan Life Insurance Company, that limits benefits for individuals with mental conditions to 24 months but continues benefits for individuals with physical conditions up to age 65 ------------------------------------------------ GEORGIA MENTAL HOSPITALS VIOLATES ADA L.C. v. Olmstead, 1998 WL 163707 On April 8, 1998, The U.S. Court of Appeals (11th Circuit) issued a ruling in a case of first impression, in which patients challenged their continued confinement in psychiatric facilities in Georgia. The Court held that: 1) The ADA and the Department of Justice's integration regulation prohibit the state from confining people with disabilities in a state run institution when that individual could be more appropriately treated in a more integrated community setting. 2) The continued confinement of patients in state psychiatric hospitals, in segregated environments, violated the ADA, despite the state's claim that it did not have funds available to fund alternatives. The Court remanded the case for further proceedings on the issue of whether requiring the state to make additional expenditures would fundamentally alter the service it provided. ************************************************************* This month's recipients of the Deaf Watch GOLD Award. Lauri's Home Page (http://members.aol.com/Lbox7272/homepage.htm) Excellent New Site! Let's give these sites a round of applause! And a visit too!!!!!! ************************************************************* This month's recipients of the Deaf Watch Award. InfoSord (http://www.redestb.es/personal/fesoca) First Spanish site to get this award! Good site too! El Paso Center of the Deaf and Hard of Hearing (http://www.whc.net/epcdhh) Excellent Site! ************************************************************* "Moving, moving. I’m ready to leave. Let’s go!" Artie Martinez just before his release from the mental hospital. ************************************************************* "There is no evidence to suggest that there is any greater occurrence of mental illness in the Deaf population. But, poor diagnosis, miscommunication and misguided treatment programmes have resulted in the gross over-representation of Deaf people in mental hospitals" A study by Timmermans (1989) identified that whereas hearing patients had remained in psychiatric hospital for an average of 148 days, Deaf patients' average stay was 19.5 years. ************************************************************* Letters from readers. Tammy Benson 2209 Ewart Avenue Saskatoon, Saskatchewan S7J 1Y1 Dear friends, Hello. My name is Tammy Benson and I am desperately in need of your help. I am the mother of a delightful 3 1/2 year old boy who has a profound hearing loss. Here in Saskatchewan, the predominant ideology views sign language as a 'last resort', only to be introduced after a child has 'failed' orally. Allow me to describe the current situation: * All children in Saskatchewan under the age of three who are diagnosed with a significant hearing loss must be referred to the Saskatchewan Preschool Auditory Rehabilitation Centre (SPARC) in Saskatoon. * SPARC's philosophy is that of an oral/aural approach with emphasis on auditory/verbal therapy for ALL the children they provide service for. * There are no sign language programs available in this province for young deaf and hard of hearing children. * Parents are discouraged from using sign language - we were told to "just wait and see what the hearing aids would do for him" when we asked where and how we could learn sign language. * When it become apparent that the hearing aids were of no use for my son, the ONLY option - the ONLY program - presented to us was the cochlear implant program. My son was then left without any direct service for eight months - until after he had the surgery. * The ONLY preschool program for deaf and hard of hearing children is strictly oral/aural. Despite my best advocacy efforts, my request for an interpreter was denied. I was told that "providing a visual language interpreter for your son would be contrary to the philosophy and objectives of the preschool program". (I was very fortunate that our separate (Catholic) school system has since responded to our son's educational needs, and has provided him with an ASL interpreter. He is, however, the only deaf attending this school. * Saskatchewan does not have a School for the Deaf. You cannot imagine our horror when my husband and I realized that Saskatchewan is one of the few, perhaps the only place in all of North America where the communication options available for young deaf children are limited to one. Outraged, we have been actively advocating for our son (and for substantive program changes) for several months, but no one is listening. On March 10, 1998, I made a public statement (the story was aired on the CBC news) to our Minister of Health. I told him that he had a moral, an ethical and a legal responsibility to initiate immediate changes in the program options available to young deaf children and their families. He has agreed to "look into it" but needs documentation of sign based programs that are available in other provinces. He also requested any other information that would substantiate my position. Please understand, I am challenging a very powerful, firmly entrenched, 'oral/aural only' establishment. I need your help! Please send to the Minister of Health information, statements, or literature concerning any or all of the following: 1. Documentation of existing signing programs for young children. 2. Sign language as a viable alternative to cochlear implantation. 3. Sign language as a positive contribution to the child's overall communication strategies. 4. Parents must have choices available to them and deserve to have their choices respected and supported. Please copy and pass this letter along to colleagues, educators, professionals and parents who may wish to help send a strong message to the Saskatchewan government that the programming currently available for profoundly deaf children in our province is both inappropriate and unacceptable. I also respectfully request a copy for myself so I can be aware of what the Minister has received on this issue. Please, for the sake of the children, take the time to respond. Thank you. Sincerely, Tammy Benson FAX: (306) 242-2467 Voice/TTY: (306) 343-9611 The Honourable Clay Serby Minister of Health - Sask. Health Room 346 Legislative Building Regina, Saskatchewan S4S 0B3 FAX: (306) 787-8677 ------------------------------- Gallaudet University provides an internship experience for students in their School Psychology Program. The Louisiana School for the Deaf has served as an internship site for several years. We feel our participation in this program has been of great benefit to our school and our students.. We recommend that you consider this program if you aren't already doing so. For information contact: Dr. Spencer Gibbins Department of Psychology Gallaudet University 800 Florida Ave. NE Washington, DC 20002-3695 Phone (voice/tty) (202)651-5540 email: SGibbins@gallua.gallaudet.edu ------------------------------- Don't know if this is something for your newsletter or not but I was watching 20/20 last night and it discussed the "Jerry Springer Show" and how many people were appalled by the contents of the show and that someone ( I wasn't totally paying attention then ) wanted to cut federal funds that support the captioning of that program. The Jerry Springer Show isn't really my bag but it wouldn't be right if they do cut captioning funds. If someone up in the federal level doesn't like that show they should ban it all together not just ban it for the deaf audiences. I'm all for taking the show off the air but to cease captioning it because it upsets a few people would be wrong! Thanks - Stevie ------------------------------- Hello, my name is Chris Lagarde I am the manufacturer of some device for impaired people. I do produce the screen braille communicator , a communication device for deafblind people and I also produce the blockletter communicator, a communication device for deafblind people who are not able to read braille. I also manufacture some mechanical aids for people with multiple sclerosis and I manufacture devices on request. Now I do have a question. Are there devices at your opinion that need to be developed or are there problems where perhaps a special equipment could help. I might be able to develop something. Please let me know. Thank you very much. Chris Lagarde Beeksestraat 42 NL-4841 GC Prinsenbeek tel/fax +31 (0) 76 5420463 email: lagarde@freemail.nl ------------------------------------------------------------- - DEAF WATCH NEWSLETTER - Federal ID Number : 33-0765412 - Circulation by direct EMAIL : 324 Subscribers - Circulation by indirect EMAIL : 9356 Subscribers - Chief Editor/Editor : Richard Roehm - Assistant Editor : William Cross - Orange County, California - Internet : Deaf@activist.com - Nesmuth@hwsys.com - DEAF WATCH Http://www.deafwatch.com - Http://home.hwsys.com/users/roehm/deaf.htm - Visit Http://home.hwsys.com/users/roehm/nez.htm ---------------------------------------------------------- - Education is the best gift that lasts a lifetime! - Help someone subscribe to The Deaf Watch Newsletter ---------------------------------------------------------- - SUBSCRIPTION INFORMATION - To be added to the mailing list, send "SUBSCRIBE" - To be deleted from the mailing list send "DELETE" - to this address NESMUTH@HWSYS.COM - - Mailing lists are not sold/given to anyone. - - If you are receiving this newsletter and did not ask to - subscribe, then this means that this was sent to you through - a different mailing list that is not in our control. 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