Reaching the "Invisible Population": Enhancing Vocational Rehabilitation and Disability Support Services to Hard of Hearing College Students

John Schroedel, Carol Kelley, & Patty Conway

4/10/03

Abstract

The objectives of this paper are to define and exemplify some possible solutions to the multifaceted problems involved in improving VR and campus services to students who are hard of hearing. Barriers to delivering these services, rooted in attitudes and behaviors of persons who are hard of hearing or hearing, are examined. Case histories are presented to demonstrate how hard of hearing students succeed in college with the assistance of specialized staff. Exemplary ideas are discussed to enhance how to: (1) identify changes needed in VR or Disabled Student Services (DSS) programs, (2) recruit students and facilitate their transition into college, (3) help students overcome resisting acceptance of their hearing loss, and (4) promote college persistence. Extensive comments made by session participants are presented and summarized.

How Many College Students have a Hearing Loss?

John: An important first step is to estimate the number of deaf and hard of hearing students attending the nation's 5,000 colleges and universities. This is essential because a director of any program needs an accurate assessment of its target population for budgeting, staffing, and services. During the past ten years four national surveys of college administrators, including those experienced with students with disabilities, reported between 20,000 and 28,000 such students on their campuses. However, a very different number results when students with hearing loss are asked directly. In 1990, a national survey of college students about federal financial aid led to an estimate of 258,000 deaf and hard of hearing college students. This is a surprising figure from a group of people who usually do not reveal their hearing loss. The Research and Training Center at the University of Arkansas estimated 468,000 college students with a hearing loss were enrolled during 2000 (Schroedel, Watson, & Ashmore, 2003). Among these 468,000, 345,000 were hard of hearing, 115,000 deafened after age 19, and 8,000 deafened before age 19 including 2,500 at Gallaudet University and NTID at RIT. This estimate of 468,000 students was projected from prevalence rates derived from the most reliable national demographic study available (Ries, 1994). It is important to clearly define estimated groups. This report defined deaf people as those who cannot hear and understand speech and hard of hearing people as those who have difficulty hearing and understanding speech.

Audience: Was that with or without a hearing aid?

John: Without use of hearing aids.

Audience: I do not feel good about that.

John: The 1994 demographic report was based upon scales developed during the 1960s to assess hearing loss during household interviews. That history does not take into account the rapid development of the sophisticated technology in present hearing aids. So maybe the scales need to be revised, however, the definition of the two groups with hearing loss makes sense. Note that these demographic-based definitions are dissimilar to those used by vocational rehabilitation and special education professionals.

One may think that 468,000 is a big figure, however, this is only 3% of 15 million students attending 5,000 colleges. A key question is: why the large discrepancy between the estimated 28,000 students from a survey of college administrators and the estimated population of 468,000? The most likely answer is that most hard of hearing students are not requesting campus and VR services. That is the best explanation available for this massive discrepancy.

Furthermore, other surveys show that most college-aged hard of hearing persons have a mild loss. From a VR perspective it would be presumptuous to say such a person does not have a disability and is ineligible for services. By contrast, consider that a person with a slight hearing loss may have emotional-psychological difficulties or other functional limitations interfering with doing well in life. Part of the problem is that the field lacks accurate assessment measures of the actual functional capacities of people who are hard of hearing. Furthermore, among college-aged persons (18-34) only 5% use hearing aids, whereas the other 95% could benefit from hearing instruments (Schroedel, Kelley, & Conway, 2002). The fact that only 5% use hearing aids suggests many are not accepting their hearing loss.

The Social Psychology of Being Hard of Hearing

There is a need to address some of the social-psychological issues faced by hard of hearing people. In the attached Figure the black boxes refer to hearing persons and the white boxes refer to hard of hearing persons. This Figure represents a model of the attitudes and behaviors many persons who are hard of hearing or hearing display in response to hearing loss. Stigmatizing means assigning a negative attitude to hearing loss and the Figure includes a self-fulfilling prophecy. A step-by-step explanation of the model follows. When a hard of hearing person hears incorrectly, misunderstanding can occur, and this person acts inappropriately. Then hearing persons may say, "That's stupid." This ridicule reduces the hard of hearing person's self-esteem, may lead to social withdrawal, and, in turn, to potential underachievement. Then hearing persons may say, "See, I told you he couldn't do it." This viscous cycle ends in this self-fulfilling prophecy. The question remains: how frequently do these attitudes and behaviors take place? It is important to add that some hard of hearing individuals act as shown in the Figure and others do not. We do not want to create stereotypes.

Individuals who are hard of hearing use different styles to cope with these attitudes and behaviors. Some proactive coping styles include being assertive and working harder than others (overcompensating). More frequently, however, the professional literature reports reactive coping styles characterized by varying degrees of denial, pretense, bluffing, deception, limited interaction, and withdrawal. As a hard of hearing person I behave like this. You can find other hard of hearing people whom have behaved similarly. By contrast, there are hard of hearing people who react positively to negative circumstances by assertiveness or overcompensating. Support for this model comes from interview and focus group research studies with hard of hearing and late-deafened workers. However, other research has ascertained negative attitudes toward some attributes of hearing loss among college students who hear. Therefore, the psychosocial adjustment experiences of hard of hearing workers and hard of hearing college students can be generally similar.

Barriers to Services

These conditions converge to form barriers to accessing and enhancing VR and DDS services.

  • One barrier is that the diverse effects of their hearing loss confuse many students. For example, with my new hearing aids I understand better in small quiet rooms, but have many difficulties understanding conversations outside buildings. Furthermore, if a person has a soft quiet voice, I am lost in a one-to-one conversation. I usually avoid group conversations. Many hard of hearing people do not fully realize how these frequent and subtle environmental differences impact their ability to hear and understand others. It can be confusing even with hearing aids.
  • A second barrier is most hard of hearing people lack hard of hearing peers. If two hard of hearing people meet, they rarely would talk about their hearing loss. This is among the reasons why many hard of hearing people lack meaningful self-identification. If they ask, "Who am I?" Most would answer: "I am hearing." Naturally, it is understandable that most have no other viable social identity. By contrast, most signing Deaf people lack these kinds of social-psychological problems. Subsequently, we are talking about two very different groups of people. In addition, most late-deafened individuals are more similar to hard of hearing persons than to Deaf people.
  • Furthermore, most professionals lack specialized training on issues related to better serving hard of hearing persons. Many do not understand the attitudes and behaviors associated with being hard of hearing. Both service professionals and hard of hearing students share the problem of a wide paucity of useful information. Training packages for professionals are obsolete. These were among the factors that motivated us to put this presentation together. The Council of State Administrators of Vocational Rehabilitation has a subcommittee endeavoring to improve training for VR counselors serving hard of hearing adults.

Exemplary Case Histories

To place these issues in more personalized perspectives, case histories of four hard of hearing college students are presented.

Gina: High school staff encouraged her to use various communication devices. But even with a moderate to severe hearing loss she did not use her hearing aids because of auditory feedback and the ear molds made her uncomfortable. As a high school senior, she wanted to go to a small private college. She told her VR counselor that she often misunderstood conversations on the phone and in groups. She tried an assistive listening device (ALD) and did not like it. She was diagnosed with a learning disability and lower academic skills. Even though she disliked behind-the-ear (BTE) aids, the audiologist put a BTE aid in one ear and an in-the-ear aid in the other. Professionals realize that most BTE aids have more auditory power than smaller in-the-ear aids. Regardless, Gina missed much in class discussions, replied inappropriately, and sometimes bluffed. She did well in remedial classes and hoped to go to a four-year college to become a mental health counselor for people with hearing loss.

Debbie: As a college freshman Deb was referred to DVR by the Disabled Student Services unit. She has a profound loss in one ear and a mild loss in the other ear, which exemplifies the unique problems of uneven hearing loss in each ear. Debbie did not use hearing aids. During her communication assessment given by VR staff she could not identify many problems related to her hearing loss. The VR counselor worked with her to try new hearing aids with telecoils (for a phone attachment). She was instructed about ALDs and reconnecting with the DSS unit. At first she used an ALD in lecture classes, but not in discussion classes. One professor used the ALD, but did not turn it on, and gave Debbie a D. Debbie now uses hearing aids, various devices, oral interpreters, and has a 2.0 GPA Her career goal was to become a meteorologist

Carol: The names linked with all presented case histories are fictitious The first two cases emphasized more about VR services. I will approach the next two cases more from the perspective of postsecondary support services. These students attended a community college with a special program for students who are deaf or hard of hearing. This may differ from your professional situation, but we hope that you will gain some helpful ideas and suggest to us on how to improve the solutions to problems we will offer later in this paper.

Dale: Dale has a moderate hearing loss and his dad is also hard of hearing. He was referred to DSS by vocational rehabilitation. He had to take an adult basic education test in order to enter college. Dale was very unhappy about being scheduled to do this with a group of signing deaf students. VR personnel were aware of his denying his hearing loss and referred him to a summer transition program. At first he was very uncomfortable with the signing between deaf and hard of hearing students. He soon warmed up after he met some hard of hearing students who did not sign, but still did not feel very comfortable. In the fall he selected a non-signing hard of hearing student as a roommate. During the orientation program, he was disinterested in ALDs and oral interpreting. All he wanted was a note taker. Moreover, he did not want anyone in the classroom knowing whom that note taker was assisting. Not surprisingly, by midterm he was not doing very well and he went to see the DSS counselor. Dale decided to try an oral interpreter because he wanted to be successful. That helped some in the beginning courses. He also stated, "I missed a lot when I was in high school and I am upset because I was not then provided these services." This was probably the first step he took toward resolving his denial. He still is not there yet, but he has progressed. He had a counselor who was positive, patient, reassuring, and did not push him. VR approved his request to change his major. However, this new major was more academically demanding and at midterm again he was having problems. The DSS counselor asked if he would try C-Print. He did, liked it very much, and requested it until he graduated. He is still uncomfortable with other people knowing he is hard of hearing, but I think he has come a long way. He worked with his VR and DSS counselors to transfer to a four-year university to major in electronics.

Phil: Phil had a moderate to severe hearing loss and attended public elementary and middle schools. Then his parents moved to a city that has a school for deaf students where he completed high school. He learned to sign, but was never integrated fully into the Deaf culture. Later he attended a college with limited accommodations and withdrew. After working on several dead-end jobs he went back to his vocational rehabilitation counselor who referred him to an out-of-state college with a special program for students with hearing loss. This led to some problems. Being more mature and older, he felt that he did not fit in very well with younger students just entering college. Subsequently, he did not have many friends and was very lonely. The counselor got him involved in intramural sports and computers that became his niches. His interpersonal skills were enhanced by working in the DSS office, being a big brother to a hard of hearing student, working with new hard of hearing students in the summer transition program, and developing friendships with some students who hear.
When he began college, he was placed in remedial classes in English, reading, and math. He also took one computer course. He did excellently in his reading, math, and computer courses, but English was another story. He had to take second level English three times before he could enter English composition, which delayed his graduation. This made him very frustrated, but the counselor helped him learn how to deal with his feelings. Because of his determination, his persistence, and help from his instructors, tutors, and counselors, he completed an associate of science degree in microcomputer information processing.
Audience: Did he use hearing aids or other technology?

Carol: He had hearing aids and tried a FM system. In college VR usually takes care of those matters, so unless they ask us, we do not get involved with hearing aids. It is really difficult to get hard of hearing college students to try different accommodations. At that time we did not have C-Print operators, but Phil did get through.

Audience: Why is it hard? When my students at the University of New Mexico get their hands on a FM system, they love them.

Carol: Does anybody else have problems with their students using such accommodations?
Audience: It depends on the student. I have two hard of hearing students who do not acknowledge their hearing loss and would never use a FM device.

Audience (clarification): She has three students. One will use the FM system. The other two will not. They are still in denial and do not want to use the FM system.

Carol: Phil really wanted to be hearing. He did not want to use visible accommodations. We do not push the students about those issues, because it is their choice whether they want to use ALDs. We make them available, but if they do not want them, we do not pursue the matter. However, Phil achieved his goal and VR helped to place him on a job working with computers in a state Division of Motor Vehicles where he is working still today. I visited him once and he is doing really well.

Observations from Four Cases

There were some observations we noted when we looked at these four students.

  • First, terms used to describe their severity of hearing loss ranged from mild to severe. Next, I am going to ask you to identify what you observed these students initially avoided.
    Audience: Interpreters.
    Carol: Anything else?
    Audience: ALDs.
    Audience: I have students that avoid informing the professors.
    Audience: Yeah, they even avoided the professors most of the time.
    Audience: If they misunderstood something in the classroom, they still would not try to obtain the knowledge by using other methods of communication.
    Carol: Let me summarize the overhead so you can see how close you got to what we observed.
  • They initially avoided deaf students and sign language. Some changed as they went along.
  • They did not want you to be able to see their hearing aid. Some did not want anybody knowing that they were getting accommodations.
  • They did not want much to do with K-12 schools, VR programs, and colleges serving deaf students.
  • All these behaviors reflected negative attitudes they had learned and self-denial of their hearing loss as mirrored in the previously presented Figure.
  • Carol: VR and DSS professionals acted to help these students to effectively deal with these problems. What were some of the ways VR and DSS personnel helped them? Anyone remember anything?
    Audience: Offered accommodations.
    Carol: Yes, they offered the accommodations. DSS staff did not force accommodations and some students accepted them and others did not. They accepted hearing aids through the assistance of either VR or DSS or both.
  • They accepted assessments. Remember Debbie went through the communication assessment to learn what problems she was having. She was not really aware of those problems, but after the assessment she was able to identify them better.
  • They got help for coping with the emotional side of their hearing loss and becoming socially active.

Audience: On your last overhead where you observed about the students. Would not the last two items, coping with the reaction to being hard of hearing and developing social activities, come before accepting hearing aids? It would seem to me that it would be really difficult for a person to be aware of hearing aids unless you first dealt with the psychological side. You talked a bit about the student who was having trouble with his English writing. As a counselor it seems to me you have to deal with the emotional and acceptance sides before you can move onto the technological side.

Carol: You are very correct. However, we did not put these observations in any type of order. We just listed some identified problems. You are very right that until they start working through denial and becoming active and involved, you cannot really make other progress.

Audience: I wonder how did the DSS professionals accomplish that?

Carol: How did the DSS professionals accomplish these changes? These students became successful cases. We excluded, for example, the ones that withdrew after they twice failed English. It has to be students that wanted to succeed, then you can work with them. We also wanted to demonstrate effective professional interventions.

Audience: I was wondering about the methods that you used such as one-on-one mentoring?

Carol: She was wondering about the methods that DSS personnel used in getting students to accept the various changes that we have on the overhead. We shortly will describe more solutions to the problems. Here we simply presented examples of assisting some students who had problems.

John: Thank you, Carol. We would be the first to admit that we do not have all the answers. We want to keep our part of this presentation brief to give you more time to say what you want to say because we want to hear from you. We are going to take notes of what you say. We appreciate your perspectives because we believe many service professionals are not getting all the training they should be getting. Furthermore, hard of hearing consumers have meaningful experiences with these issues. Thus, your ideas are very important.

Establishing and Improving VR and DSS Services

We have four subject areas with a total of about 20 ideas that may benefit some of these different types of hard of hearing students. We emphasize VR and DSS staff working together. When we mention VR and DSS, sometimes it applies more to VR and at other times more to DSS.

Program Preparation and Changes:

  • First, take a look at your state agency or your college program and assess where are changes needed. What are you doing now and where are improvements needed? One area probably you are going to have to take a look at is how to enhance training of your staff to better serve hard of hearing consumers. This includes the psychosocial issues along with other ramifications we have described.
  • Communication issues are next. You must ensure your staff has good speech so that hard of hearing students can understand what is happening. It is helpful to have an amplifier available if the student wants to use it. As much as possible link with audiologists where students can get services for their hearing aids and how to connect them to ALDs. Sometimes you will have to train the audiologist on counseling issues, but many have worthwhile ideas. Also, have special phones widely available to make campus and VR premises more accessible.
  • The third topic is technology. If we can get additional hard of hearing students to wear hearing aids they will benefit if all professional services are properly performed. For VR personnel it would be particularly helpful to have your agency save money by becoming more conversant with different communication technologies: models, costs, advantages, and disadvantages. Counselors do not want to spend $3,000 for hearing aids that might not help a student to the maximum extent feasible. Some of this equipment is very expensive. You probably will have to work with other professionals such as audiologists to get this information.
  • You might also consider VR and DSS staff jointly funding and working together to set up a technology center on campus where personnel can demonstrate the use of personal listening devices, answer questions about them, and show hard of hearing students, staff, and faculty how to use them.

Recruitment and Transition

  • Carol: Locating students is a pivotal area because we want to know where those students are. They do not often come forward because I know there are more hard of hearing students on our campus than those who seek services. This is "now or never" with some students. If we do not locate them or have them referred to us early, we may never see them.
  • VR and DSS need to collaborate because that can make a major difference to hard of hearing students. Some state VR agencies do not work with these students because of order of selection policies. This means that they first serve the most severely disabled (MSD) and they consider deaf students to be the MSD. Confounding this is that sometimes staff do not have specialized training
  • DSS and VR, especially DSS personnel, need to work with the VR counselors outreaching to high school teachers, counselors, and parents to get referrals and help with advocacy. Relevantly, liaison personnel must inform these groups who are often confused about the differences between IDEA, ADA, and VR. Because these issues are rarely explained, DSS personnel usually have to tell them that the college does not automatically provide accommodations or services because it is under different legislation than K-12 schools. The Individuals with Disabilities Education Act entitles identified students to receive services. With the ADA, as VR and DSS staff know, it depends on contingencies. Students have to identify themselves as having a documented disability. The student then works with the counselor to develop an accommodation plan.
  • Parents frequently are unaware of these complex issues and consequently their hard of hearing sons or daughters receive no special services in high school. Also parents need to understand that VR requires eligibility before service can be rendered. We meet with them to clarify these confusing differences. We want them to come into DSS and start the first semester on the right foot. If you go to www.pepnet.org and click on the product resource center there is a printout that explains the differences in all this legislation. There is also a tip sheet on how to teach hard of hearing students.
  • As you know, summer orientation programs help hard of hearing students learn about generic campus services, DSS services, dorm experiences (if available), social activities, and career exploration. These programs vary from one day to two-weeks. Again, www.pepnet.org has an on-line interactive training module called "Gates to Adventure" in which parents and/or teachers can work together with the hard of hearing adolescent about many aspects of preparing for and entering college. This is particularly useful if there is no special on-campus orientation program for deaf and hard of hearing students. If you have an orientation program for all students make sure that you disseminate information about your DSS services because hard of hearing students often do not understand that they may receive services. Information about DSS services should also be in the college catalog, student handbooks, and faculty course syllabi.

The Resisting Student

John: Resistance is one way of describing a group of hard of hearing people. There are other categories, but this is one we wanted to address. Signs of resistance include preoccupation with being a person who hears as exhibited by denial, pretense, and withdrawal. This is done by applying much negative energy to maintain a quasi-self-concept, "I'm hearing, I'm hearing, I'm hearing," that does not really fit the person.

  • Counselors have to find ways of breaking down this resistance to help these persons accept their hearing loss. An easy-going approach may be effective. Identify with the person having the problem by putting yourself in her or his shoes and try to see it from their point of view. Rather than disagree or confront them, defer to their opinions. Once the counselor has achieved a comfortable level with the person, try to help them see other perspectives and guide them toward a more positive social identity to open doors to realistically addressing communication and other problems associated with the hearing loss.
  • Relevantly, there is a clear need for better communication assessment tools. One is from the Kentucky VR agency (PattyC.Conway@mail.state.ky.us). The central purpose of good assessments is to get an accurate definition of the communicative functional limitations of the hard of hearing consumer and move away from the audiogram. Moreover, confused by the diverse consequences of hearing loss, many consumers need insights to more effectively address all the different communication situations they face. In assisting these students I think you will need to use a structured approach. Identify one problem at a time then persist in various ways until the problem is solved. Then move onto the next issue. Do not overload the student with too much information because many new ideas are hitting them simultaneously.
  • Experienced hard of hearing students can be peer counselors with new students by becoming their buddies and informally communicating outside of formal settings such as the DSS office. These peer counselors can share ideas and serve as role models with these younger students to help them do well in college. The University of Georgia has a unique program called "Sound Off" where hard of hearing students can get together to discuss ways they cope with their hearing loss. It is a completely unstructured group rap and provides cathartic opportunities for these students to get feelings out and constructively identify with each as peers.

Retention

Carol: We know that three out of every four deaf students quit college without completing a degree, but lack similar information on hard of hearing students. If you have a student who is informed, involved, and receives appropriate accommodations from well-trained counselors, teachers, and staff she or he will more likely persist through college.

  • I want to emphasize the PEPNet Technical Assistance Centers (TACs). Hinds Community College has the state outreachTAC serving general colleges and universities in Mississippi. We get all kinds of calls about how to work with hard of hearing or deaf students. We do not know all the answers, but our responsibility is to know where to get the answers. There are lots of support systems available such as listservs where you can chat with people to resolve problems. We need to know about those and other resources.
  • Hard of hearing students need to know that they can become successful in college. Their parents and teachers can also benefit from this information. "Nothing sells success like success." Providing these persons with success stories from hard of hearing alumni who can either visit the campus to talk to the students or write stories of their college experiences. Informed consent is needed to publicize information on alumni. The Postsecondary Education Consortium (PEC) publishes PEC Salutes with 40 pages about successful deaf and hard of hearing students. I think it will be wider in scope and called PEPNet Salutes.
  • Promoting an "Hearing Loss Awareness Day" can enhance self-esteem and self-knowledge among hard of hearing students. Have an exhibit booth to display ALDs so that teachers and others can have hands-on experiences with these devices. You can also have materials about hard of hearing students including captioned videos and library books. The same type of event can be done through a generic "Disability Awareness Day." However, not all hard of hearing persons consider themselves to be disabled and may dislike the term.
  • In-service training for staff is vital. We know many service professionals are uninformed about how to work with hard of hearing students. They do not know how to identify them. When they see such a student answer inappropriately staff may think that the student is not very bright. Furthermore, even though it is the student's choice to seek services and accommodations, it is important to tell them that these are available. In addition, the faculty should know about accommodations that their hard of hearing students will need. Inform faculty that you will answer questions and conduct training workshops. I am trying to complete a pamphlet about motivating teachers to more positively serve students with hearing loss.
  • Social activities on- and off-campus are instrumental factors in retention. DSS personnel need to know ways to get students involved. Peer counseling and student rap groups have been discussed. Self Help for Hard of Hearing People has many local chapters. Their national headquarters has many relevant publications. Contact www.shhh.org.
  • Be sure that VR is involved on your campus. Our liaison VR counselor comes once a week to be available for students with problems. We make any VR counselor feel welcome and set up a place where they can meet regularly with the students because this is an important part of the student's total collegiate experience.

General Audience Discussion

John: There were many holes in what we said today. We certainly want your ideas as front-line service providers or as hard of hearing consumers. Please come up, tell us whom you are, about your experiences, reactions to some of these issues, and your suggestions to make them better.

Audience: Thank you for a very well presented program. My name is George Kosovich and for 13 years I have worked in the Rehabilitation Services Administration (RSA) Deafness and Communicative Disorders Branch with the goal of improving and increasing rehabilitation services to individuals who are hard of hearing or late-deafened. I have seen this thing from all angles. I was a student that flunked out of college because I did not know what was happening and I was in denial. I was a former VR counselor for persons with all disabilities and people with hearing loss specifically.

I saw myself in different ways in all four presented case histories: for example, flunking out. I had a hearing loss growing up and in retrospect I can understand why I disbelieved I could graduate from college. I entered college because my high school buddies wanted me on the football team. I played football, flunked out several times, then went back and got my grades up. After high school I was not referred to VR and had a sudden hearing loss in my better ear when I was 25 years old. I had been doing unskilled work. Then I went to VR and after a complete evaluation my counselor said I had the ability to go to college and graduate. I never heard that before and it made a big difference in my life by motivating me. Furthermore, I finally wore a hearing aid for the first time and that also made a difference, but not completely. I got a large ALD with a headset then went into the classroom. Talk about facing denial. I wore the ALD with the headset and some of my football colleagues would say, "Hey ready to take off?" Joking like that helped because it was funny. However, by using that device I could hear the teacher and actually participate in the class for the first time. I could see what denial is about, but I do not know how to cure it.

On another matter, I think colleges and universities should adopt a program for screening hearing ability. It does not have to be sophisticated audiology. You can train someone to use an audiometer. Advertise the hearing screening on posters with the idea that, "Do not let a hearing loss sneak up on you because it can affect your grades." After the screening students can indicate they have a hearing loss, get a more complete evaluation from VR, then the agency can get involved. But I think the VR office will not follow-up unless there are more than four students with a significant hearing loss at a college.

It is essential to have a VR counselor who knows something about hearing loss. Unfortunately that is not the case in a lot of places. I know that Kentucky has 40 personnel trained to work with hard of hearing people. I also think these specialists should be certified. We have been depending on rehabilitation counselors for deaf consumers, but there are not enough of them. Furthermore, the master's degree training for RCDs requires learning sign language and about deafness, but that knowledge is not primarily useful in dealing with hard of hearing or late-deafened people. I think Kentucky is the perfect model for a professional VR approach to serving hard of hearing people.

I am pushing for a new kind of professional. Joanne Wilson, the new Commissioner of RSA, is advocating for consumer participation in training professionals. There are some grants coming out now to get consumers who have successfully adapted to their disability involved in showing other people they can get by their disability and focus on their abilities. Similarly, I think there is a role for SHHH members to effectively help individuals who are newly hard of hearing or just coming to grips with their hearing loss. SHHH has affiliates all around the country with many longtime members, but these chapters face the problem that relatively few people join a self-help group. Therefore, there is a need for knowledgeable professionals and paraprofessionals to help hard of hearing persons and their family members cope with the hearing loss. SHHH has been listening to various people and I think that the organization is willing to get involved in the training.

In summary, we have a long way to go. Some of the topics discussed today are the same we have been talking about for 40 years. The stigma and denial still exist and I do not know when they will go away. We are on the right track as far as VR is concerned and the Kentucky program is an ideal prototype we should be adopting across the country.

John: Thank you, George. I have encountered many of the things George has experienced. I withdrew from two universities. This is your time, not my time. Someone else please come up. Tell us whom you are and what ideas you have.

Audience: My name is Bonnie Smith and I am the program services manager for deaf and hard of hearing students at the University of New Mexico. I have been in this field for 20 years and I began as an interpreter. However, I soon was working with many hard of hearing people and started a support group. My basic job when we had group meetings was to ensure that everyone understood each other. When there was a misunderstanding I asked them to repeat what was said to help clarify the flow of the conversation. They shared a lot and I learned a lot.

One key point I learned was that you have to deal with the emotional aspects before you try giving students equipment. When a hard of hearing student first comes into my office, I spend at least 60 to 90 minutes just letting them talk. After hearing their story, I would tell them, "Oh, that is very normal." That often shocks them because many never have been told they were normal. Afterwards I would say, "Do you want to try something that we have?" They were amazed by the FM systems. All this might explain why I have 13 FM systems signed out and have people waiting for five more I ordered. I had one woman hear her child cry for the first time in my office when she put on a FM system. At first she was shy and did not think she could make it through college. She graduated as a special education teacher who was very excited and confident. I have many stories like that. I agree that it is worthwhile to take time with them as well as give them a sense of what is and what is not normal. Another helpful step is to introduce hard of hearing students to each other on campus. The SHHH group in our town tends to be for older people, so the young college students are not as interested. But I like the idea of starting an SHHH chapter on campus.

Working with the faculty ahead of time is helpful. At the beginning of each semester I inform professors who will have hard of hearing students in their classes of the names of the interpreter or note taker and what are their roles. My letter also explains how to use an interpreter and make audiovisual presentations accessible to students with hearing loss. I usually get responses from some inexperienced teachers who flip out before they even get started. We talk and get them ready to handle the situation when it comes.

Our outreach approach to hard of hearing students may be unique. We have a welcome back week for all students which centers around a cultural day, an employment day, and just a regular department day, including ours. We have different tables for these topics. I find most of the hard of hearing students come to our department table because they do not look for disability services. Not considering themselves disabled, most do not go to the DSS program, but will come to our service unit for students with hearing loss. At that point I say, "Yes, you are qualified because you do not have to be deaf to get services." I think many hard of hearing students feel their hearing loss is insufficient to request services. I do not have any criteria, such as a cutoff point on an audiogram, but if a student identifies a problem in the classroom, we will work with them.

John: Thank you very much, Bonnie. Come on up. More ideas, comments, please.

Audience: Thank you. My name is Mitch Turbin and I recently started working with the Department of Veteran's Affairs National Research Center in Portland, Oregon. I have a lifelong progressive hearing and vision loss. I began using hearing aids when I was in college. I clearly remember in high school and college I became aware of the hearing problem. Because it was tremendously scary, I pushed it back, not wanting to acknowledge it. That represents denial and fear.

One approach I used when counseling people with disabilities was to encourage them to form a positive self-concept. This is particularly important to young college students developing their self-identity. It is stigmatizing when someone says you have a severe hearing loss or you see your audiogram. These experiences imply that you are defective and people want to avoid that idea. I have seen some well-intentioned professionals introduce young hard of hearing students to a deaf person or students with hearing and vision impairments to a deaf-blind person. When these professionals hear that the young students run away they say, "Oh, they are in denial." In my opinion, the professionals are really in denial by denying normal human reactions. I have seen hard of hearing kids in tears after they encounter deaf people. That is a normal healthy reaction. The problem is the professionals who insist that hard of hearing persons are in denial because they do not want to be associated with deafness.

Conversely, as you know, deaf people can be frightened to meet a deaf-blind person because they fear loss of their vision. We need to really take a look at the healthiness of being afraid of losing a primary sense. Frankly, do not resist the resistance because that is a very healthy, positive life energy that indicates a person is preserving their best possible self-concept. One technique in my "tool box" as a counselor was never use the term hearing loss if avoidable. When I had to talk about the hearing loss, I would say things like. "Well, you do not have the greatest ears." It is scary, upsetting, and annoying when people say that you have a hearing problem you would prefer not to think about the rest of your life. But you can deal with that if you use the right frame of thinking.

I also advocate support groups for same-aged peers with disabilities. Several years after I obtained my first hearing aid, I joined a young adult support group in New York City that shifted my perspective on life. Such groups provide opportunities so we could talk about problems, then more important, go out and have fun afterwards.

John: Thanks Mitch. Just one point: President Franklin D Roosevelt said, "The only thing we have to fear is fear itself." Think about that. Come on up.

Audience: As an older hard of hearing student going to a community college I learned some very important lessons. My instructor assigned us to work in groups, but to my mortification the three other women in my group refused to work with me. Then I would sit with CART and it is extremely difficult for people to come over to my side of the classroom and sit beside me. Would a young hard of hearing student tell you something like that? Who is going to tell you about an extremely embarrassing social moment? Young students in denial would avoid admitting an experience almost unimaginable to face. These are aspects where counselors need to be aware. DSS staff members need to have mandatory training about the social discrimination and ignorance about disabilities that especially happens in classrooms. These are completely foreign ideas to many college instructors.

John: Thank you. We have time for more.

Audience: I work at a new campus that lacks a critical mass of students with hearing loss. I have one late-deafened student in her early 20s desperately seeking other peers for a support group. She went to the SHHH group, an example Bonnie had mentioned, and found those people were not her peers. Is there a listserv, network, or other resource where I can connect my student? She even put up signs in all of the classrooms saying, "Did you hear dot, dot, dot? Neither did I. Contact me via e-mail." No one has contacted her.

John: Have you heard of the Association of Late-Deafened Adults?

Audience: Sure.

John: That is a resource. Contact me and I can give you more information. Do others here have any answers for her?

Audience: ALDA has a web site at www.alda.org. Furthermore, it is difficult for the older and the younger folks to come together, but it may be helpful if some younger folks realized that these older folks were young too at one point and had to deal with the same issues. They might consider them as mentors because we have a lot of older folks with very germane experiences.

I urge you to look again at the mentor concept. I favor the mentor approach over the self-help group because the latter has problems. Whereas 28 million Americans have a hearing loss, SHHH nationally has between 10,000 and 15,000 members. The chapters fluctuate in their memberships. Sometimes between 5 and 30 people attend a meeting. If you contact the SHHH office in Bethesda, Maryland (301-657-2248) they can probably identify somebody as a mentor helpful to a student.

John: One other positive idea. If we can persuade one hard of hearing person to accept their hearing loss and become an advocate for other hard of hearing people then over a period of time 10 to 15 more hard of hearing people will accept their hearing loss, creating a ripple effect. We have more time. Come on.

Audience: This presentation released many of my sentiments. My name is Ben and I am a hard of hearing graduate student at Western Oregon University. I was born this way and many of these topics have touched my emotions and make me think about many encounters as a hard of hearing individual. What stands out are the dynamics when I interact with groups of hearing individuals and these are often stigmatizing. On the soccer team I tried to be involved in social situations, but did not really understand what everybody was saying. This led to bluffing and a constant loss of self-esteem. But this process carries on throughout life. Even now at 29 years old I still unfortunately repeat past behaviors. I am afraid to ask people to clarify what they said. I play on a flag football team in Salem and the dynamics are the same as when I was a teenager.

Even with adults it does not change. These issues need to be confronted. For example, learning social skills. How do we deal with the dynamics so as hard of hearing individuals we can be on the same page as our hearing peers? Furthermore, we have a lot of fears generated from having been put down, teased, or picked upon because we are perceived as different due to our hearing loss. It is important to understand that we have a lot of fears and so do many persons who hear. These issues need to be examined, for example, during counseling because feelings run deep and we want to be seen as normal, not different. The dilemma is we cannot change the fact that we are different. These sentiments are deeply rooted and go on for a very long time. Consequently, it takes much willingness and courage to accept that we are hard of hearing and we cannot change the fact that we will always be different.

John: Thank you. I experienced a lot of that myself. Any other wrap-up comments? Anyone want to say a closing word? Thank you very much. We appreciate your feedback, listening, and sharing.

Audience: You have handouts?

John: The handouts include a communication assessment used by Kentucky DVR, a list of references with web sites where you can get information about hard of hearing people, and a handout from our Research and Training Center. We have an article about hard of hearing college students. If you want that or other related articles, contact me at the University of Arkansas (jschroed@uark.edu).

Summary of Comments by Session Participants

Session participants made numerous comments that reinforced points from the presentation and broke new ground by providing original insights. Key themes from these comments and related issues are listed below:

  • Outreach to hard of hearing students on campus is crucial to contact those who are unserved, enhance the quality of social life among hard of hearing peers, and apparently improve the frequency of visits by VR counselors to the college. Mentoring and self-help groups are two approaches to outreach. There was approximately equal support expressed among session participants for using either approach to bring students together to assist each other and linking them with DSS. Mentoring, either in the form of peer counseling, big brothers, buddies, or similar techniques was advocated. Informal self-help groups also have their advantages, despite the unique organizational difficulties faced by Self Help for Hard of Hearing People. It appears that service professionals act mostly in background roles to establish or facilitate the interactive dynamics of mentoring and self-help efforts. More information is needed about how VR counselors help hard of hearing college students on campus. In some states a VR agency may assign a liaison or itinerant counselor to advise in-state students at a specific college. In special circumstances these counselors may also assist out-of-state students. Generally, it appears that out-of-state students communicate with their counselors through e-mail and TDDs. Video conferencing may increase this pattern in the future. There is no firm information that a specific number of students with hearing loss must be enrolled before a VR counselor visits a postsecondary program.
  • Critical mass mentioned several times in the discussion has significant ramifications. This idea was popular during the 1980s when the Arubella bubble" of deaf students, born during the maternal rubella epidemic of 1964-65, entered postsecondary training. At that time a critical mass of 30-100 deaf students was needed for cost-effective provision of support services: the more deaf students on campus the more services offered. By the late 1980s the number of deaf students academically qualified for college declined as did the number of colleges with comprehensive special service programs. There were about 150 colleges identified in 1988 and about 100 in 2001. Contributing to this decline is the trend in merging or joining services for students with hearing loss with DSS programs. However, if many hard of hearing students do not consider themselves disabled how can DSS reach them? How can the critical mass of such students be formed? The next two sections address this question.
  • What is "normal?" Many ramifications of this question emerged during the discussion. It is clear that hard of hearing persons are unique as they are neither hearing nor deaf. At times ridiculed and rejected by persons who hear, hard of hearing persons are outsiders in general society. However, because the hard of hearing population is so large and heterogeneous we must avoid stereotypes. Not only do the age at onset and severity of hearing loss vary among individuals in this population, but also do personal qualities such as resiliency, assertiveness, and self-esteem. It is normal to express grief over the loss of hearing. It is normal to want to be like the majority in society. It is counterproductive to resist accepting one's hearing loss by stone walling use of helpful accommodations and services. We need to do a better job in communicating what we mean by the resisting hard of hearing person. By increasing use of services and accommodations the DSS program can project the image that it is normal to be hard of hearing and seek DSS assistance.
  • Overcoming underachievement. We have given this presentation to seven national or regional conferences during the past three years to about 250 participants. During every presentation numerous hard of hearing students and young adults have come forward to tell us personal, sometimes emotional, stories, with many replicating key components of the viscous cycle model displayed in the Figure. No one has disagreed with the main ideas in this model. The unfortunate outcome of this model is academic underachievement by hard of hearing college students: low grades, failing courses, dropping out. From both our presentation and comments from the audience it is evident that teamwork is required to overcome this underachievement. This teamwork evolves from patient, persistent, and knowledgeable VR and DSS professionals assisting a student to overcome fears and denial. The student, in turn, wants to succeed and welcomes use of accommodations and services that enhance positive psychosocial adjustment and postsecondary educational attainment. These are the ultimate goals of VR and DSS professional services.

References

Ries, P. W. (1994). Prevalence and characteristics of persons with hearing loss: United States, 1990-91.
Vital and Health Statistics,10(188). Hyattsville, MD: National Center for Health Statistics.

Schroedel. J., Kelley, C. & Conway, P. (2002). Where are all the hard of hearing students? Some tips for enhancing services by postsecondary and rehabilitation professionals. In K.B. Jursik (Ed.), PEPNet 2002: Diverse voices, one goal, 105-111.

Schroedel, J. G., Watson, D., &Ashmore, D.H. (2003). A National Research Agenda for the postsecondary education of deaf and hard of hearing students: A road map for the future. American Annals of the Deaf, 148(2),67-73


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