The prevalence of HIV disease among the deaf and hard of hearing in the United States is greater than among the general population.  Despite improved access to services— in large part through the Americans with Disabilities Act—the deaf and hard of hearing are at risk for poor access to society's educational, religious, and social institutions. Moreover, there appears to be a shortage of prevention and care providers equipped to serve this population effectively. Inadequate access to health care combined with a shortage of culturally competent providers results in poorer health status and quality of life for many individuals who are deaf or hard of hearing.

Hearing Impairment

The American Social Health Association estimates that about 28 million individuals in the United States are hearing impaired—approximately 10 percent of the U.S. population.  Worldwide, about 70 million individuals have a hearing problem. 

Deafness is a hearing loss that precludes the learning of language through hearing.1

Hard of Hearing describes hearing loss that, although serious, is less severe than deafness and usually permits understanding of spoken language through hearing aids.

Hearing Impairment refers to all degrees of hearing loss, from slight to profound. 2

People who are deaf may have some hearing—perhaps enough to hear some sounds in the environment—but not enough to understand speech. They primarily rely on vision for watching sign language, lip-reading, reading, and drawing. 

Hard of hearing people first rely on their hearing and reinforce it with their vision.  Even someone with a mild hearing loss may miss 50 to 70 percent of what is said, so the degree of hearing loss alone does not indicate the level of difficulty an individual may have in understanding spoken language.

The Deaf and Hard of Hearing

Deaf and hard of hearing individuals have a wide range of hearing impairments, come from all walks of life, and represent a variety of backgrounds and circumstances. Yet, they comprise a distinct culture and share many common values and concerns.  

Seventy-five percent of the deaf and hard of hearing in the United States use the country's third most common language,  American Sign Language (ASL).  English is their most common second language, which they read on a 4th grade level, on average.

Stereotyping

Many Americans are unaware of deaf culture, and think of the deaf and hard of hearing only in terms of hearing disability.  Identity is formed by a multitude of factors, of which hearing status is just one.  As one writer has said: 

• Deaf people go to school, have jobs, drive cars, fall in love, get married, pay taxes and eat at McDonalds . . . just like hearing people.
   
• Deaf people have a wide range of hearing loss,  ability to process sound, and to understand speech.
   
• Hearing aids may be beneficial for some but do not cure hearing loss.
   
• Deaf people have varying abilities to produce speech, related to the degree and frequency range of hearing loss and their age at its onset.
   
• Lip reading ability varies from person to person and is generally ineffective for communicating since many spoken words look alike.
   
• Many deaf people, although intelligent, do not have a good command of written English. 3
   

A deaf African American male is deaf and African American and male.  His identity is influenced by his religion, sexual orientation, and a host of other characteristics.  How these factors combine to create the individual is unique.  Thus, it is important to do away with stereotypes and acquire knowledge about the deaf and hard of hearing—about all individuals—based on facts.   

Communication Between the Hearing and Hearing Impaired

ASL is by far the most effective means of communicating with the deaf, but Pidgen Signed English, Cued Speech, gesturing, drawing, lip reading, and signed English are also used among some individuals.4

HIV Among the Deaf and Hard of Hearing

Between 8,000 and 40,000 deaf and hard of hearing individuals are living with HIV disease in the United States, according to the Centers for Disease Control and Prevention.  This wide range is based on two limited studies, one indicating a seroprevalence rate of slightly less than 1 percent and the other of about 5 percent.  A well-known Maryland study based on test results at federally funded counseling and testing centers yielded a 4.3 percent rate; however, these data do not present a complete picture since federally funded counseling and testing sites historically account for no more than 12 to 15 percent of all HIV-positive test results. 

Since 1998, the CDC has evaluated medical records in 11 cities to estimate HIV prevalence among the deaf and hard of hearing, but to date no wide-scale seroprevalence study has been conducted.   Whatever the exact number of deaf and hard of hearing individuals living with HIV disease, there is little question that seroprevalence among this minority is higher than among the general population. 

As early as 1992, experts estimated that the deaf population was about 8 years behind the hearing population in HIV knowledge and awareness.5

The Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals is a leading provider of services to the deaf and hard of hearing.  The agency recently conducted a risk assessment among 250 subjects, about 22 percent of whom were program patients.  The remainder were from the community at large. Only 15 percent of respondents from the community demonstrated knowledge of HIV transmission facts.6 

Deaf high school students have a much lower knowledge level about HIV transmission than do their hearing counterparts.  The gap is narrowed somewhat among college students, but it still exists.7  These data give evidence to the shortage of appropriate prevention materials and communication strategies. 

Sexual Contact

The number of HIV infections among the deaf and hard of hearing transmitted through heterosexual or same-sex sexual contact is unknown.  Likewise, it is not known how the proportion of total cases resulting from sexual contact differs from that for other populations.

Advocates caution that the messages required to reach unique population groups are as diverse as the populations themselves.  Surveillance data on other communities, e.g., African Americans and Latinos, seem to reveal that messages targeting one group, for example "out" gay white men, will not reach minorities who embody different values and cultural norms. 

One in seven deaf persons has a history of substance abuse, compared to one in ten in the hearing population.8  The high prevalence of substance abuse among the deaf and hard of hearing may be associated with the host of problems described above.  Additionally, children with disabilities, including those who are deaf or hard of hearing, are at much higher risk for sexual abuse than hearing children, and childhood sexual abuse is an indicator for substance abuse as an adult.9

According to the Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals:

"Many individuals in Deaf communities have not had access to the recent widespread efforts to educate people about the dangers of drug use and abuse.  Public service announcements have often not been closed-captioned. Education and prevention curricula in the schools have not accommodated the communication skills of deaf or hard of hearing children and have been insensitive to their culture."10 

The deaf and hard of hearing are protected under the Americans with Disabilities Act of 1990. With specific regard to medical treatment, the legislation provides a variety of accommodations such as TTY access, signal lights that are used to visually display fire alarms, doorbells, and closed captioning services.  Unfortunately,  providers do not always comply with these provisions.

Getting in the Door

The U.S. Department of Health and Human Services recently sponsored the National Meeting for the Deaf and Hard and Hearing Community.  The HIV/AIDS Bureau participated in the event.  The meeting was held in a Federal office building, where entry typically requires some combination of photo identification, voice authorization, and being listed on a roster.  The process is cumbersome at best. The difficulty encountered by non-hearing individuals attending the national meeting attempting to trouble-shoot the system is emblematic of the multitude of barriers they face when seeking to access society's most fundamental institutions.

How is a deaf person to enter a building that uses an intercom system to confirm identity?  How is that individual to receive directions to a medical facility when so few own a single TTY machine?  How were 75 meeting participants, the majority of whom stayed at a single hotel facility, to communicate with the outside world when the hotel owns one TTY machine?

Shortage of Culturally Appropriate Providers and Materials

The shortage of culturally competent providers is reflected in the dearth of culturally appropriate prevention and treatment education materials.  The under-supply of useful materials results in individuals not understanding HIV disease.  They remain unaware of the differences between HIV and other sexually transmitted diseases, do not comprehend basic treatment concepts, and may not understand the full import of an HIV-positive test result.  Advocates speak with one voice about teaching individuals about HIV prevention and treatment:  the best method for communicating with the deaf and hard of hearing is through graphics, photographs, and diagrams.

Advocates report that health care providers are less likely to offer HIV screening to the deaf and hard of hearing than to their hearing clients.  Likewise, they report a lack of cultural competency among providers of medical care and support services, noting that many do not understand the effects of culture on how individuals process information, make decisions, and live their lives.

Interpreters Often Are Not Available

Lack of access to interpretation services appears to be a systemic problem.  Many providers do not comprehend when interpretation services are needed.  They assume that the deaf and hard of hearing have mastered the English language, or that medical terms are easily translated into ASL.  They do not understand that most individuals who have learned a second language—in this case, English—often are reluctant to use it, especially in stressful situations. 

Financial resources for providing interpretation services are often in short supply. Organizations providing HIV/AIDS services have limited funds.  Planning bodies allocating funds for services face difficult decisions, knowing that the need for services far out-weighs the availability of resources.  The shortage of trained and effective advocates for the deaf and hard of hearing—and for others needing interpreters— compounds the problem and perpetuates the undervaluing of interpretation services.

A shortage of qualified interpreters exists in many areas.  The shortage is likely to continue unless financial resources for procuring these services are increased and unless the relationship between interpretation services and health status becomes more widely understood.

Community Members Are Not Always Empowered

The deaf and hard of hearing often have no choice but to seek HIV/AIDS services from organizations that are unfamiliar to them.  These organizations may be unprepared to serve this population, just as many AIDS service organizations established to serve white, "out" gay men lack the cultural competency and trust within the community to serve women, minorities, and others.

The difficulty of accessing services offered by culturally incompetent organizations is compounded by the challenges of negotiating the maze of insurance and entitlements requirements.  Availability of interpretation services can help.  But, are those services going to be available if deaf and hard of hearing individuals cannot effectively advocate for them?

Experience has shown that affected populations must be involved in developing solutions to the epidemic among their own communities.  The deaf and hard of hearing are no exception.   Reducing the impact of HIV/AIDS among this population requires redoubled efforts by all those involved in the fight against the epidemic—providers, advocates, policy makers, administrators, and members of the community.  A comprehensive response that more accurately reflects the deaf and hard of hearing culture and all that it embodies, will help facilitate improvements in HIV incidence and AIDS morality among this population.

Jim is in his mid-thirties, and fluent in American Sign Language (ASL).  He does not own a car, and transportation is a big problem for him.  So is childcare: one agency will care for preschoolers; another for elementary school students; still another for teenagers.  Because his children are of different ages, Jim must find a way to get them to various childcare providers when he has a medical appointment.  Jim has found that many providers do not offer interpretation services.  Perhaps they do not have funding for it, or perhaps they do not understand its importance. 

Jason Barth is Director of the Deaf AIDS Project, operating at four sites in Maryland.  "Jim is fortunate in that at least we know about him," says Mr. Barth. "We can try to coordinate the transportation, childcare, and interpreter services he needs.  The problem is that these services are not always available.  They just aren't there."  

The Deaf AIDS Project has an annual budget of $80,000, which funds two fulltime positions (a director and one staff member) and basic operating expenses.  It receives public funds to provide HIV prevention, its primary focus, although it also provides technical assistance, HIV counseling and testing, and limited HIV case management.  The Project is an activity of Family Services Foundation, Inc., a large mental health and social services agency primarily serving the deaf and hard of hearing.  The agency has over 200 employees, with offices in Landover Hills, Salisbury,  Frederick,  and Baltimore,  Maryland. 

Prevention

The Deaf AIDS Project staff visit schools, rehabilitation centers, organizations serving the deaf, and deaf and hard of hearing social groups like "the Silent Orioles Club," a longstanding deaf organization in Baltimore. Every intervention is provided in whatever sign communication mode participants prefer, whether it is a variation of visual English such as Signing Exact English (SEE), Pidgin Signed English (PSE), or American Sign Language (ASL).

Technical Assistance

The Project assists agencies that may have only a few non-hearing clients, or agencies that want to begin serving the deaf and hard of hearing.  The Project teaches organizations how to use a TTY machine, Relay services, and about the Americans with Disabilities Act.  Mr. Barth says, "TA is important for preparing organizations to care for the deaf and hard of hearing and also helps to communicate that we are not trying to take patients away from any other provider."

HIV Counseling and Testing

The Project provides counseling and testing with support from Johns Hopkins University School of Public Health at its four agency clinics around the State, as well as through a mobile unit, which the Project was able to purchase 2 years ago.   Mr. Barth underscores the importance of the mobile unit:

"We like this approach because people don't have to visit a clinic where they are going to run into someone they know.  The deaf community is very small and close knit and if you see a friend in the doctor's office, you ask them why they are there.  With the mobile unit, we can heighten a person's sense of anonymity, and increase the probability that they will be screened and tested for HIV and, if HIV positive, linked to care." 

HIV Case Management

The Deaf AIDS Project provides limited HIV case management to minimally language skilled (MLS) deaf individuals.  MLS individuals are not fluent in ASL, English, or any other language.  According to Mr. Barth, an estimated 1,200 to 4,800 MLS individuals live in Maryland, and  "they are hard to reach, hard to serve, and at great risk."  The Project has an HIV case management caseload of up to 30 individuals at a time.  Most are gay,  African American males with a history of substance abuse.

Mr. Barth:

"One of our case management patients, a really nice fellow, has progressed to AIDS.  He is MLS, so it is difficult to communicate with him.  He also has AIDS-related dementia, compounding that difficulty. He lives in an assisted living facility for deaf people. He can cook for himself, but he is very lonely."

"Another young man for whom we provide case management grew up in the Caribbean.  Because of his hearing impairment he was put into a school for the mentally retarded.  He is a smart person, but he didn't learn much at those schools and today, he does not have a functional grasp on reality.  At this moment he is in an in-patient detox facility. He also has a severe psychiatric Axis II diagnosis." 

Cultural Competency and Referrals

The Deaf AIDS Project has built relationships with providers that are culturally competent to serve HIV-positive people who are deaf and hard of hearing.  The process has been laborious and time consuming since many providers do not understand deaf culture and are not positioned to care for this population.  "You don't see much about serving the deaf and hard of hearing in cultural competency training curricula," Mr. Barth observes. 

Other providers, who may be funded to supply medical services and who understand deaf and hard of hearing culture, may receive no funds to offer ASL interpretation, or transportation, or childcare.  Thus, the patient encounters a disjointed system of providers that seriously threatens continuity of care.

Mr. Barth observes that deaf people often have little choice in where they go for care—that they have encountered an attitude that communicates:  "We've found a provider who will see deaf clients, now go there."

He cautions that the willingness of a provider to see a deaf or hard of hearing client is not synonymous with cultural competency.  He recounts the story of a deaf case manager working for a large AIDS service organization in the Baltimore-Washington area.  The case manager was born in a country that viewed deafness as a cognitive and psychological problem and brought this bias to his job.  "He looked like he ought to be culturally competent, but he wasn't," says Mr. Barth. 

Building a Continuum of Care

The Deaf AIDS Project is committed to building a continuum of HIV prevention and care services but it is encountering several problems not unfamiliar to other organizations serving individuals living with HIV disease.  With only one staff person and a director, the Project has little time for raising money, and for investigating, learning about, and then complying with complex funding processes.  Moreover, there is little time to build relationships with decision makers in the community and to participate in the community planning processes, which, Mr. Barth notes, are different for HIV prevention, HIV care, and for substance abuse.  Yet, he recognizes that without advocacy at the community level, increased services for the deaf and hard of hearing are not a realistic expectation.  However, persuading his clients to participate at the grassroots level is difficult because ASL interpretation is often not provided.

Mr. Barth tells the story of being tested for HIV and not being asked if he is deaf or hard of hearing.  He reads lips beautifully, and it is entirely possible to have a conversation with him and have no idea that he has severe hearing loss.  But he is in the minority, he says. 

"Most of the deaf and hard of hearing people we see need ASL interpretation and providers, both of prevention and care, who understand that need and can comply with it.  We need a system where a deaf client can get a transportation referral through an agency that uses TTY, a childcare provider able to meet the needs of deaf and hard of hearing children, a medical provider who will readily provide ASL interpretation, and a system for coordinating the patient's care among all of these providers.  Most deaf and hard of hearing people don't have this system yet, and they are paying a high price."

New Tools on HAB Website

CARE Act technical assistance helps grantees and planning bodies comply with legislative and administrative requirements, with the ultimate objectives of improving the quality of services available to individuals living with HIV disease and the efficiency with which they are delivered. 

Technical assistance has been available through the CARE Act since 1993 and has helped recipients address challenges such as fiscal management, ensuring consumer involvement in health planning, establishing service standards, and enhancing outcomes evaluation.  New technical assistance products and services reflect emphasis in the CARE Act Amendments of 2000 on early intervention services for people not yet in care, quality management, and assessing unmet need for care among those who know their HIV status but are not in care.  

Technical Assistance Features:

• Technical Assistance is accessed through an HIV/AIDS Bureau project officer.  It is typically provided by consultants, who are available to grantees and planning bodies through the Bureau's Technical Assistance Contract, commonly referred to as TAC.  Consultants include both peers (defined as consumers and persons with CARE Act grantee experience) and other professional experts.
   
• Technical Assistance products and services include: written documents such as manuals and guides; conference calls; distance-based learning, including satellite broadcasts; and regional training sessions. A new Technical Assistance Information Center is currently being established that will provide Web-based resources.