Deaf Community and Its Need

Deaf Community and Its Need for Hospice Service

For many people, being deaf or hard of hearing is a foreign concept. But for many others, being deaf means being a part of a close-knit community with a lifestyle, culture, and language all its own. It is this gap between the hearing public and the deaf community where communications can falter and challenges arise.

One significant challenge is the need to support deaf individuals in a medical environment, specifically hospice. According to the National Cancer Institute Website, a hospice is defined as "a concept of care that involves health professionals and volunteers who provide medical, psychological, and spiritual support to terminally ill patients and their loved ones. Hospice stresses quality of life -- peace, comfort, and dignity. Hospice services are available to persons who can no longer benefit from curative treatment; the typical hospice patient has a life expectancy of 6 months or less." This level of care requires extra sensitivity and compassion for the patients and their families, to not only ensure that the patients are comfortable and pain-free but that both the patients and family members have the tools they need to cope with the grieving process. In this situation, if the medical staff members are unable to communicate with their deaf patients and/or their families, it can complicate an already distressing situation and cause further emotional pain.

"Do Deaf people have an opportunity to convey their emotional turmoil to loved ones and friends around them? Many do not. And the fact of the inability of many hearing people to understand the communication of Deaf people alters the grieving process by making it more difficult for Deaf people to express what is inside" (Zieziula, 1998, p. 193).

All individuals, regardless of their hearing capacity, deserve to not only be treated fairly and with dignity while ill, but deserve clear communication in a language they understand. For this reason, it is essential to create a comprehensive bereavement program designed to address the needs of deaf individuals in hospice care. This paper will address what it means to be deaf, the need for this type of program and what it intends to accomplish, as well as how it will be marketed, funded, and evaluated.

Deaf defined

Outside of the deaf community, deafness may be perceived or defined as a "condition." But for many deaf people, the term "disabled" does not apply, as their hearing status is not a disability, but rather a key part of who they are. These distinctions may confuse the hearing community; however, the deaf community is very specific about how they define themselves and how they would like to be defined by society. As stated on the D.E.A.F., Inc. Website, individuals may identify themselves in the following ways:

Deaf: Typically indicates hearing loss is severe and occurred before the learning of formal language; primary communication mode is visual or tactile (for Deaf-Blind persons with little or no residual vision.) Strongly identify with core values of Deaf community.

deaf: Same as above, but without strong identification with core values of Deaf community.

Hard of Hearing: Indicates the presence of some residual hearing that may enable an individual to use spoken English with amplification. Hard of Hearing persons may also use a manual form of communication, and may or may not identify with core values of Deaf community.

Late-Deafened: Indicates the onset of hearing loss occurred after spoken language competence is fully developed. May or may not identify with core values of Deaf community.

Just as there are a number of ways a deaf individual may identify his/herself, communication style may also be highly individualized. Each person's educational experiences, peer influences, and cultural/linguistic identity of family of origin may play a part in his/her unique communication style. Furthermore, individuals might display characteristics from more than one of the above groups (D.E.A.F. Inc. Website.)

For those deaf people who use manual language, American Sign Language (ASL), is the preferential choice. ASL has its own distinct grammar and syntax. Also, other people may use a manually coded form of English. In formal situations, manual language users tend to communicate with non-signing persons through the use of qualified interpreters (D.E.A.F. Inc. Website.)

Additional communication methods include the use of assistive technologies such as speech and speech reading. Plus, for those individuals who choose to use their residual hearing by communicating orally, amplifying devices such as Computer Aided Real-time Transcription (CART) may be used.

Deaf individuals may also communicate via an interpreter. An interpreter is a certified professional who mediates between two cultures and languages, yet does not participate in the interaction. It is critical that an interpreter adhere to a strict professional Code of Ethics and that he/she treat each conversation as neutral and confidential (D.E.A.F. Inc. Website.)

The need

It may seem that the number of deaf individuals in the United States comprises a small portion of the overall population. However, this perception is inaccurate. In 2006, 37 million American adults had trouble hearing (ranging from a little trouble to being deaf), which represents a substantial increase since 2000, when 31.5 million U.S. adults reported trouble hearing (Pleis, Lethbridge-Cejku, Benson & Schiller, 2000 & 2006.) This means that virtually 10% of Americans have some level of hearing loss -- and represents a significant portion of the population.

Due to the rise of the deaf and hard-of-hearing population, there is an increasing responsibility to implement comprehensive bereavement programs that cater to the needs of these individuals. According to the Americans with Disabilities Act (ADA), "hospitals must provide effective means of communication for patients, family members, and hospital visitors who are deaf or hard of hearing. The ADA applies to all hospital programs and services, such as emergency room care, inpatient and outpatient services, surgery, clinics, educational classes, and cafeteria and gift shop services," ("Communicating with People Who Are Deaf," 2003). While this is helpful, this does not refer specifically to hospice care, therefore there is still a gap for those deaf individuals in hospice. "Services mandated by the Americans with Disabilities Act have improved access for this group of Americans, but disparities in access to health care and health information remain" ("Health Disparities Among Adults With Hearing Loss," 2008).

In the medical setting, communication hurdles must be overcome through the use of interpreters. The ADA outlines a number of situations that necessitate the use of an interpreter:

Discussing a patient's medical condition and history, symptoms and medications

Explaining and describing tests, treatment options, surgery, and other procedures

Obtaining informed consent for treatment

Communicating with a patient during treatments and testing procedures

Providing instructions for post-treatment activities, follow-up treatments, and medication instructions

Supplying information about organ or blood donations

Explaining powers of attorney and living wills

Discussing complex insurance or billing matters.

The ADA continues, "Sign language or other interpreters must be qualified. An interpreter is qualified if he or she can interpret competently, accurately, and impartially. In the hospital setting, the interpreter must be familiar with any specialized vocabulary used and must be able to interpret medical terms and concepts." ("Health Disparities Among Adults With Hearing Loss," 2008)

Currently, there are only a handful of states in the country who offer hospice services for the deaf community. Although there seems to be a rising interest to accommodate these individuals, many facilities are unsure of how to create and implement such a program. Based on a local assessment, there are six churches in neighboring counties who are unaware of hospice

In addition to the simple lack of deaf-specific hospice programs, there is also a considerable lack of knowledge about the deaf community, which is creating further barriers. The problem statement on the National Center for Deaf Health Research Website declares, "Little is known about disease trends, underlying attitudes, or health behaviors among Deaf or hard-of-hearing people. This population is woefully understudied and underserved," (Pearson, 2010).

Also, there is little known about the grieving process of deaf individuals. "The general public, as well as many professionals, continue to misunderstand the ramifications of hearing impairment and deafness on the psychological and social lives of people who experience this disability. We are also at a loss to understand how hearing impairment in general and deafness in particular affect the grieving process and how hospice workers, medical personnel, counselors, or clergy can best serve this community when they experience significant loss," (Zieziula, 1998, p. 181).

"The need for survivors to comprehend and assimilate a loss is also complicated by the issue of communication. Most information regarding a loss is gained by verbal communication, often lost or misunderstood when two different language systems are being used. Yet the solution is not as simple as hiring an interpreter to meet the needs of the Deaf griever. There is very often a mindset on the part of many hearing people, including professionals, that Deaf people, those with a "disability? Will not be able to comprehend complicated messages, and therefore should receive only the basic information of what has happened or what is to follow. Equally destructive is the attitude that communicating with the Deaf person may involve more time and effort than one wishes to expend" (Zieziula, 1998, p. 193).

Moreover, and perhaps one of the most important challenges related to this issue, a large percentage of deaf individuals do not trust the hearing society. "Historically, the dominant hearing culture has relegated deaf people to social categories such as "handicapped" and "outsider." The history of oppression and exclusion of the deaf community -- although with important variations depending on the countries -- and the ignorance and rejection of the natural and preferred means of communication of many of them is a well-known and many times denounced phenomenon," (Munoz-Baell & Ruiz, 1999, p. 1).

Finally, there is a real deficiency of information in Deaf culture regarding hospice and its related services. Finding appropriate facilities can be a time-consuming and frustrating process.

The program: breaking down barriers

The purpose of this program is to meet the challenges stated above by providing hospice services that cater to the unique needs of deaf individuals. This will be accomplished through the use of educational classes and workshops provided in churches and community centers. Deaf persons skilled in ASL will be trained as volunteers and must be available on call when a deaf patient is admitted to the facility. Only those individuals with a high level of signing skills will be accepted. The volunteers will also be asked to accompany the patient to doctor visits as well as make needed home or hospital visits. However, volunteers will not replace certified interpreters who accompany the patient on office and doctor visits. Grief counselors will also be interviewed and possess ASL skills, and may include pastors, ministers, priests, and other religious clergy who serve the Deaf community.

Another vital part of this program will be to generate program awareness throughout the local deaf community by providing advertising and educational materials and possibly a Website.

Community outreach classes will also be a vital component of the program. These classes will help promote program awareness among medical facilities and staff and will also provide a resource for those patients needing deaf services.

In addition, deaf bible study groups and support groups will be offered to assist with the grieving and healing processes. It will be encouraged that family members of deaf patients be included in these classes to help provide the support their deaf family member and/or friends need.

Program staffing

Educated individuals, grief counselors, and religious clergy will make up the program staff. Volunteers will be taught by the core staff members with hopes that these individuals will comprise an extension of the staff. Additional volunteers may include current and retired medical staff as well as volunteers from schools, non-profit organizations, churches, etc. The intention is to find enough volunteers to help keep costs to a minimum.

Program funding

The program will be funded through a variety of efforts. Local churches and churches aware of Deaf needs will be solicited for donations and to perform community fundraisers. Donations from foundations, Deaf organizations, and private organizations will also be sought. Program staff will communicate with the overall Deaf community to generate other fundraisers such as bowling tournaments, sports events, craft and bake sales. Additionally, significant time will be dedicated to grant research. Some of these research resources will include:

Grants for Mental Health, Addictions, and Crisis Services: A published resource that provides information on more than 6,300 grants from 880 foundations for a variety of facilities, including support groups and bereavement counseling.

Grants for People with Disabilities: A publication that offers more than 8,200 grants made by approximately 940 foundations including a range of needs from blindness and deafness to family counseling and general care.

The Complete Directory for People with Disabilities: A Comprehensive Source Book for Individuals and Professionals. This directory includes information about national and state agencies and associations, foundations, camps and exchange programs, living centers and facilities, conference and trade shows and more.

Directory of Grants for Organizations Serving People with Disabilities: A Reference Directory Identifying Grants Available to Nonprofit Organizations: Short entries are provided that describe foundations that provide funding for accessibility, blind, deaf, developmentally disabled, and elderly programs and services (to name a few).

Program marketing: getting the word out

The key to success for any program is effective marketing. To generate interest and promote this program, advertisements will be placed in Deaf bulletins and monthly newsletters, Websites, newspapers, and agencies for the Deaf. Since word of mouth is very popular among the deaf community, additional advertising will also be pursued at local funeral homes, churches, universities and community colleges, community centers and clubs, police and fire departments, city hall, and the chamber of commerce. Along with advertisements, educational literature such as informative brochures and fact sheets will also be displayed where appropriate.

Educational opportunities will also be offered to not only promote the program, but to teach sign language to the interested public and potential volunteers. These educational workshops will be taught by ASL interpreters and/or Deaf people who are affluent in the language. Other workshops will be designed to educate about bereavement, provided by religious clergy, grief counselors, and professional teachers.

To further market the program, staff members and volunteers would be encouraged to participate in events such as Deaf Awareness Week. Also known as the International Week of the Deaf, Deaf Awareness Week is the last full week in September is Deaf Awareness Week. The About.com Website describes this increasingly popular event, "The purpose of Deaf Awareness Week is to draw attention to deaf people, their accomplishments and their issues. During this week, many deaf organizations hold activities to celebrate and conduct public information campaigns to educate people about deafness. Companies and agencies often mark the event, and schools, colleges, and universities hold awareness events."