T. 7-8-93 Control No. 3062413127 JUL 23 1993 The Honorable J. Bennett Johnston United States Senate Washington, D.C. 20510-1802 Dear Senator Johnston: This letter responds to your inquiry on behalf of XX XX concerning the obligations of private hospitals and other health care providers under the American with Disabilities Act of 1990 ("ADA"). In particular, xx has inquired about the obligation of private hospitals to provide auxiliary aids and services for her son who is deaf and who has sought treatment for drug addiction. The ADA authorizes this Department to provide technical assistance to individuals and entities that have rights or responsibilities under the ADA. Accordingly, this letter Provides informal guidance to assist you in responding to XX However, this technical assistance does not constitute a legal interpretation and is not binding on the Department of Justice. Title III of the ADA, which became effective on January 26, 1992, prohibits discrimination on the basis of disability and governs the operations of any private entity that owns, operates, leases, or leases to a place of public accommodation, including a hospital or other service establishment. Under title III, a public accommodation is obligated to make available appropriate auxiliary aids and services to ensure that communication with individuals with disabilities is as effective as that with nondisabled persons. The auxiliary aid requirement is a flexible one and the type of auxiliary aid or service necessary to ensure effective communication will vary in accordance with the length and complexity of the communication involved. In many instances, the exchange of written notes with a person who is deaf will suffice to ensure effective communication. In other instances, however, such as in therapy sessions, group meetings or lectures described by XX the use of other auxiliary aids or services may be required. There are a wide variety of services and devices for ensuring effective communication with deaf persons, e.g., qualified interpreters, notetakers, computer-aided transcription services, written materials, TDDS, and closed caption devices for TVs. The cc: Records, Chrono, Wodatch, Delaney, McDowney, FOIA, Friedlander n:\udd\delaney\congress\johnston 01-02466 - 2 - use of the most advanced technology is not required as long as effective communication is achieved. For further discussion of this matter, see, e.g., section 36.303 of the enclosed title III regulation and pages 35,565-68; and sections 4.3000-4.3600 of the enclosed Title III Technical Assistance Manual at pages 25-28. Public accommodations must be given the opportunity to consult with the patient and make an independent assessment of what type of auxiliary aid, if any, is necessary to ensure effective communication. Under the ADA, the term "individual with a disability" does not include an individual who is currently engaging in the illegal use of drugs. A public accommodation may not, however, discriminate against an individual who is not engaging in current illegal use of drugs and who "has successfully completed a supervised drug rehabilitation program or has otherwise been rehabilitated successfully; is participating in a supervised rehabilitation program; or is erroneously regarded as engaging in such use." See section 36.209(a)(2) of the title III regulation; for further discussion, see also section 36.104 of the title III regulation and pages 35,561-35,562. The regulation also specifically provides that a public accommodation shall not deny health services, or services provided in connection with drug rehabilitation, to an individual on the basis of that individuals current illegal use of drugs, if the individual is otherwise entitled to such services. However, it allows a drug rehabilitation or treatment program to deny participation to individuals who engage in illegal use of drugs while they are in the program. See section 36.209(b) of the title III regulation, page 35,596, and particularly the preamble discussion at page 35,561. If a private entity receives Medicare or Medicaid assistance, then it also is subject to section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of disability in federally assisted programs and activities. I hope this information is helpful in responding to your constituent. Sincerely, James P. Turner Acting Assistant Attorney General Civil Rights Division Enclosures (2) 01-02467 Many years ago, when my children were very young, a man gave some good advice, although it has not always been easy to follow. He told me if I were not willing to fight for the rights of my children, who would. You see, all three of my children were born deaf. Neither my husband nor I are deaf. It was good advice then, it is good advice now even if my children are grown. My husband and I tried to teach our children to fight for their rights themselves, and in most instances they can and do. I have come to the conclusion that there are some things they don't have the courage or knowledge to be able to fight alone. Someone must help. Our son is thirty-two, our daughters are twenty eight and twenty seven. Our children were fortunate, through many years of teaching and hard work on their part, they are able to lip read and communicate orally. Their speech is very good, sometimes too good. People tend to think because they talk so well they can hear. They can not. They are not hard of hearing, they are deaf! There is a difference. They all wear hearing aids, so what little residual hearing they have is amplified all it can be. To talk louder or yell will not make them hear anymore, they must lip read or have an interpreter. It is a hearing world they live in. There have been many changes in technology in the past twenty years. There are many devices available to help them in our hearing world. There are TDD's for their telephones so they can talk to each other. There are special alarm clocks to awaken them, flasher for fire alarms, door bells, and telephones. Close caption devices for their television so they can read the dialogue on close captioned programs and rental movies. Yet, when it comes to communication, little has changed. Laws have 01-02468 been passed to guarantee that they are not discriminated against, that they have equal job opportunities, that they are granted the same rights and privileged that we in the hearing world enjoy and take for granted each and every day. Folks it don't happen! For most deaf and hard of hearing individuals these needs are not met adequately if at all. For the past year and a half my son has been a crack cocaine addict. I won't go into the nightmare that in itself has been, and it has been a nightmare! He has been through the drug addiction treatment three times at two different hospitals in the Shreveport-Bossier area. His father and I knew nothing about addiction or treatment, so on advice from someone in the treatment field, it was recommended that we put him in Riverside the first time. The only good thing I can say about his treatment at Riverside is that it kept him off the streets for about thirty days, he learned that there was treatment available somewhere, and he made one good friend. Since his release from Riverside in early March 1992, he has admitted himself to the drug addiction unit at Doctor's Hospital three times. He spent about 34 days at Doctor's Hospital the first time there. The second time he spent only three days in detox, since he had no more hospital days allotted him for last year. January of this year he admitted himself for the third time to the addiction unit and spent twenty eight days before being discharged. Doctor's Hospital has an excellent drug addiction program.... Their staff is excellent, the nurses are great, the doctors good, the therapists are knowledgeable .... if you are a hearing person you will have gone through a good drug addiction program. However, if you are 2 01-02469 deaf, it is inadequate. My son did learn a lot about his addiction during this three stays there. Things we, in the hearing world, take for granted, was not available to him. Communication! Drug and alcohol rehabilitation is about communication. From early morning until late at night, the addictive person is in meetings, therapy sessions, watching drug related films, attending AA meeting and NA meetings, group meetings and lectures. All of it involves talking and listening and being able to understand your problem and how to deal with it and stay in recovery. During all of my son's stays in these hospital only twice was there an interpreter present. That was for two Sunday afternoon meetings at Riverside at My insistence, because my daughters would not go to a family meeting unless an interpreter was present. At both hospitals, staff knew he was deaf, they were amazed that he had such good language and lip reading skills. Anyone who lip reads, no matter how good, misses a great deal of what is being said, even one on one. To be able to lip read the speaker must be at close range, they must speak distinctly, correctly, normally, and not mumble. The speaker cannot drop his head, turn his head, or turn his back on the person who is lip reading, if he does they are lost. Even if all of that has been done the person lip reading is still likely not to understand, they may read the word, but due to an inadequate vocabulary, not understand what you are talking about. Despite the fact that these professionals who have been providing treatment know that he cannot hear, they have expected him to get all the benefits without an interpreter. One on one it is hard at best, small group meetings it becomes confusing, large meetings are 3 01-02470 are a total loss. If one wants to know how difficult it is, put ear plugs in your ears for one day, go to meetings of any kind, see how much you know of what is being said and going an around you. See how frustrated you will become, and how frustrated and angry those around you will become if you have to ask what is being said repeatedly. You will find that pretty soon you will shut up and be quiet and not ask questions anymore. My son was quite isolated even in the addictive unit, he could not telephone a friend or family member, as we who are hearing, can. There was no TDD device for him to use, so he had to depend on other to call for him if he needed anything outside the unit. There was no close caption device for him to enjoy television in the lounge with the other patients. These devices are available and not very expensive, yet none were there. Each hospital stay, he called us to bring his close caption from home. A week and a half ago he called a counselor- at the Deaf Action Center after yet another relapse. She recommended that he admit himself to Brentwood, which he did. To say I am upset is an under- statement, I am angry, confused and totally frustrated! A doctor from Brentwood called and asked me to come and give some background information which I did. I expressed my concerns about my son being able to understand everything due to his deafness I was assured that this time he would get what he needs to kick his addiction. That his treatment would be different this time. After my meeting with the doctors I went upstairs to visit my son. We visited a while and he told me what had been happening up until then how great his counselor is. I asked if he had an interpreter, if the films he had watched were close captioned, if they had TDD so he could 4 01-02471 use the telephone or a close caption for him to watch television. The answer was "no." On Thursday his father and I went to hear an excellent lecture during family lecture with our son. The therapist was an excellent speaker, the content was informative, I just wish our son could have heard or understood everything that was presented, but he didn't. There is no doubt in my mind that Brentwood has an excellent drug and alcohol addiction program. But if the individual who needs it, doesn't hear and understand, it isn't worth a damn. I had always thought that if a person were hospitalized with an illness, or disease and I have been told repeatedly that drug and alcohol addiction is a disease, the hospital would and did provide what was necessary to insure good treatment or recovery. Each and every hospital has and does know that my son is deaf, yet no interpreter has been provided. The Deaf Action Center tells me that if he requests an interpreter, through staff at the hospital, one will be provided. If I am in the hospital and cannot breathe, am I going to have to ask before they bring me oxygen? No they are not, the same should apply for an interpreter. When our son is discharged from the hospital in few weeks he will be advised to attend ninety AA or NA meetings in ninety days. As things are now if he goes he won't know what is being said or understand, but very little. He will be advised to find a sponsor, someone who has been clean and sober for over a year. Someone he can call when he needs help over the rough spots. Whom will he be advised to come back to the hospital for aftercare and the STEPS meetings, will an interpreter be provided? 5 01-02472 He will be advised that he must stay away from old friends who use drugs and alcohol, stay away from old hangouts, that he must make new friends. As with all deaf people he has some friends in the hearing world, but is more comfortable in the deaf world with his own kind. According to my daughters, the majority of the deaf population under forty years of age, either use drugs or alcohol. I asked at the Deaf Action Center how many deaf and hard of hearing person are in the Shreveport-Bossier area. They told me about 3,000, I asked how many had spent 30 days in a treatment facility for addiction. They said they thought many would go if helm were available for them at the hospitals, but why go, they won't know what is going on. So where will our son go to make new friends? If we, in the hearing world, had to go into deaf community to make all new friends I think we would not fare too well. These are a few of the obstacles our son has faced and is facing in his search for drug rehabilitation and some obstacles he will face when he is discharged, and comes back to the real world. In each and every hospital stay regardless of what he got or did not get, his hospital bill was not adjusted as to what he understood and did not understand. He was charged full price and should receive all the benefits that you and I in the hearing world takes for granted each and every day. I have written this to say if someone doesn't care enough to speak up, nothing will change. This segment of our society in our city of Shreveport and Bossier have no provision made for their needs in too many areas. We do have excellent Drug treatment program 6 01-02473 but none for the deaf. Isn't it time that they are afforded what the rest of us enjoy and take for granted every day of our lives. If I don't care, who will? XX Shreveport, LA 71109 cc- Shreveport Times Brentwood Hospital Riverside Hospital Doctor's Hospital' KTBS TV 12 Senator J. Bennett Johnson Senator John Breaux Representative Jim McCrery Representative Cleo Fields Silent News P. S. My son has asked for an interpreter and one is being provided for him at Brentwood. Perhaps this time it will be different. At least there is hope now. (Handwritten) Our son draws SSI and all of these hospital bills have been filed on Medicare. 7 01-02474 Printed from AA Grapevine Inc. August 1986 The "Lonely Handicap" Deafness and hearing loss mean much more than a diminished or nonexistent auditory capacity for an individual. It also means diminished or nonexistent services for that person, particularly where drug and alcohol problems are concerned. "Alcoholism is a problem in all of society and unfortunately, people who are deaf have even less potential for getting services, let alone actually receiving them," said Dr. Gary Austin, director of Rehabilitation Institute at Southern Illinois University. Substance abuse programs tend to be unresponsive to the hearing impaired due to a lack of understanding of the psychosocial aspect of deafness, and certainly the very real communication barrier that exists said Dr. Alexander Boros. On the other hand counselors for the hearing impaired tend to shy away from working with deaf substance abusers because they do not have the expertise in alcoholism and drug abuse. Dr. Boros, a staff member for Project AID (Addiction Intervention with the Disabled) at Kent State University in Ohio, said, "The combination of fear operating within the deaf community, and ignorance operating in the agency world, results in barriers for the deaf alcoholic. Consequently, they are undiagnosed, untreated, and uncounted. This lack of current, solid data was best summarized in a report by Norton Isaacs, PhD. and Art Berman, M.S.W. who stated, "It is a sobering fact that we know more about the alcohol use patterns of the few thousand Lepcha of the Himalayas than we do about the estimated 13 million hearing impaired persons in our country." Alcoholism and Hearing Impairment "The deaf live in a world designed for hearing people. They live in a speech society, not a deaf society. And that always poses a problem being a minority person," said Dr. Boros. Karen Steitler, director of the Substance and Alcohol Intervention Services for the Deaf (SAISD), at the Rochester Institute of Technology in New York, said, "When you have this kind of social isolation, when you have failures in school, an inability to hold a job, or to produce an appropriate income to raise a family, when you find you are blocked in your interaction with people because of communication problems--these are all frustrations. Frustration that is repeated with no let up create substantial amounts of stress. The big lure of drugs and alcohol is that they become a relief from that anxiety and stress." "Deafness has been called the "lonely handicap,' and alcoholism is the lonely disease--they definitely make for a deadly duo," said Carol Wentzel, a deaf services specialist and substance abuse therapist for the hearing impaired from Cypress, California. The isolation experienced by the deaf in a hearing world represents a unique and painful experience. Helen Keller once said, "Being blind cut me off from the world of things, but being deaf cut me off from the world of people." Modern technology has reduced a few of the communication barriers for the deaf. With the advent of closed captioning for television, the deaf are able to enjoy a small handful of programs, that is, if the deaf person can afford the somewhat expensive decoder devices for their television. 01-02475 TDD's (teletype devices for the deaf) were an advance that for time allowed the hearing impaired access to telephone communication with the outside world. Again, however, the number of facilities that have installed TDD's and the number of deaf who can afford TDD's is limited. In deaf household, doorbell can be hooked to lights that flash, and special devices are available that cause lights to flash alerting deaf parents of a baby's cry. In addition to the isolation and limited communications, lack of knowledge among the hearing impaired about substance abuse issues is substantial. Dr. Austin says the general hearing population has improved their knowledge and attitudes toward drug and alcohol abuse in the last 5 to 10 years, largely due to mass media communications. However, the deaf do not have access to much of the information that has been presented over the radio and on television pertaining to drug and alcohol education. In an interview with The U.S. Journal, conducted via TDD, Barbara Pollard, M.S.W., L.C.S.W., an assistant professor of social work at Gallaudet College, Washington, D.C., who is hearing impaired, said, "Alcoholism has been a taboo subject in the deaf community. There is a lack of information and an inaccessibility of media programs addressing this issue. Wentzel pointed out that the deaf do not understand the concept of alcoholism as a disease. That is reflected even in their sign language which, she says, lacks signs for words such as "addiction" and "alcoholism." "The deaf use words such as 'hooked' or 'drunk;' or would say "drink, drink, drink," all of which have very moral cannotation Treatment and Services Availability "If you look at the delivery systems and the intervention systems that are available, it would have to be only a minuscule part of one percent," said Dr. Austin. Dr. Boros said that the deaf people with drug or alcohol problems "tend to die as alcoholic ... they don't get help. They don't get help, at least in part, because the agencies don't respond to them. The inability to communicate with hearing impaired accounts for a large part of the poor response. There are few substance abuse professionals or doctors who are proficient in sign language. Cultural Considerations Even with the communication barrier overcome, the cultural (life- style) and psychosocial components of a hearing impaired lifestyle must be understood and appreciated. Issues that need to be taken into consideration include whether the client was brought up in a deaf home or a hearing home, and whether his/her first language was English or ASL (American Sign Language). Also, was the client educated in a deaf residential school, or mainstreamed into public schools? 2 01-02476 Dr. Boros said, "Deaf people represent so many different back- grounds and levels of communication. Researchers lump them all together and call them deaf -- but their backgrounds are all really quite different." He said that prevention efforts are staring in the schools with the young deaf population, because of the difficulty in reaching the deaf adults population with substance abuse problems. Part of the problem in reaching the adult deaf is that those who have substance abuse problems "are invariably from outside of the deaf community." He explained that the deaf community refers to those deaf who work and socialize together. Those who do not mix with the deaf community are referred to as the deaf population. "About 5% of our deaf alcoholic clients come from the deaf community, and about 95% come from the deaf population," he said. He added that because those in the deaf population cannot be reached through the deaf organizations, yet also cannot be reached through media efforts, we are starting prevention with today's population-- because we can't reach the adults." Wentzel emphasizes further that there needs to be an awareness in the professional community that, for the most part, deaf individuals d not have medical insurance, and therefore do not have the option of paid inpatient care. Even if there were more of these treatment programs available for the deaf, paying for treatment is difficult due to the number of hearing impaired unemployed and under-employed. She said that recovering deaf and hearing impaired individuals must be encouraged to "band together and to go into the field of alcoholism counseling. The field is void of hearing impaired people who are skilled and have an understanding of drug and alcohol problems With s sigh she added, "One in 1,000 will get help for their problems. For every one of the deaf persons in my group on Monday nights, I swear there are 1,000 others out there who are not in treatment." Susan Thanepohn; U.S.Journal 3 01 -02477