Historical overview of services to traditionally underserved persons who are deaf.
Numerous reasons have been offered to explain why some people who are deaf have been unable to access appropriate and adequate services. Primary among these is the allocation of the greatest share of federal dollars to programs for higher-achieving persons who are deaf and who attend postsecondary education programs. Peterson (1981) gathered evidence of this trend by examining federal appropriations for fiscal year 1980. He noted that appropriations for postsecondary education programs for deaf people that year totaled just under $39 million. In stark contrast, appropriations for programs serving deaf people with severe handicaps and/or multiple disabilities were funded at $357,158. This contrast is even more striking when one examines similar funding figures for fiscal year 1976, when postsecondary education for deaf people was funded at $26.9 million, indicating an increase of $12 million by 1980. Programs for lower-achieving persons who are deaf, however, decreased in funding from $650,000 in FY 1976 to $357,158 in FY 1980. This backward trend typifies the historical lack of funding to traditionally underserved people who are deaf. More recently, the congressionally mandated Commission on Education of the Deaf (COED, 1988) observed the same trend and noted that the majority of federal dollars spent on programs for people who are deaf funded services for the minority of those who are deaf (i.e., those who were likely to succeed in postsecondary education).
In addition to issues related to funding, many rehabilitation facilities and programs were ill-equipped to provide quality services to persons who are deaf and who function at a lower than optimum level. Most existing programs lacked the appropriate staff and resources to serve traditionally underserved deaf people. Some responded by providing interpreters for clients from this group; however, these individuals were most often unable to benefit from these services because of limitations in their linguistic abilities and a resulting inability to benefit fully from the education system.
During the late 1980's, Congress and the U.S. Department of Education supported an effort to implement the recommendations of COED, thus spearheading an effort to provide appropriate services to traditionally underserved persons who are deaf. Not only was it necessary to infuse funds into services for this population, but it was also necessary to change the perception of rehabilitation professionals that traditionally underserved persons who are deaf cannot succeed in rehabilitation programs. These efforts have resulted in the allocation of funds for model service centers and the establishment of a research and training center focused on developing appropriate interventions and strategies for serving this population.
The goal of this article is to provide the reader with information on how this population is defined and to describe characteristics that may be found among traditionally underserved persons who are deaf. A brief history of services will also be offered along with a discussion of future directions.
This new terminology--traditionally underserved persons who are deaf--and the renewed emphasis on this group has generated a lot of confusion regarding the definition of this subpopulation. In reality, this is not a new population but is the result of an attempt to describe people who are deaf and who have historically been labeled as: low functioning, low achieving, lower achieving, lower functioning, hearing impaired developmentally delayed, multiply handicapped, multiply disabled, developmentally disabled, severely handicapped deaf, and disadvantaged deaf.
The issue of arriving at appropriate terminology has been of concern to professionals in the field of rehabilitation for some time (Long, 1991). A national task force appointed by the Department of Education following the COED report described the population as low functioning. This nomenclature has been used by the Rehabilitation Services Administration in funding grants for model service centers for this population. The National Institute on Disability and Rehabilitation Research (NIDRR), however, has preferred the term traditionally underserved in funding the Research and Training Center on Traditionally Underserved Persons Who Are Deaf at Northern Illinois University (NIU-RTC). This phrase was selected as a less pejorative one that places the onus for the problem within the service delivery system rather than on the individual with the disability. Currently, both traditionally underserved persons who are deaf and low-functioning individuals who are deaf are used to describe the same group of people.
Characteristics of the Population
The NIU-RTC was established in 1990 and charged with conducting a programmatic series of research, resource development, and training/technical assistance projects for enhancing the employment, independence, and quality of life outcomes for traditionally underserved people who are deaf. As part of the research effort underway at the NIU-RTC to determine prevalence of traditionally underserved persons who are deaf, a consensual definition of this population and a description of the various traits and demographic characteristics of traditionally underserved persons who are deaf was determined. To do this, a survey was developed to learn how rehabilitation professionals and special educators perceive six factors that, without intervention, may contribute to an individual who is deaf being traditionally underserved or place an individual at risk for becoming traditionally underserved. Based on an extensive literature review, the six factors surveyed included communication skills, vocational skills, independent living skills, educational achievement (i.e., math and reading), social skills, and additional risk factors. The last category consists of those external variables that may ultimately have a role in causing a person who is deaf or hard of hearing to become traditionally underserved.
Approximately 1,750 professionals responded to the survey. The responses suggest that traditionally underserved persons who are deaf are people who, without appropriate services, are seen as possessing the following characteristics: (It should be noted, however, that these descriptors apply to an individual who has, at the point and time of inclusion in this population, failed to reach his or her optimum level of functioning perhaps because of inadequate or unavailable services. When such services are provided, it is likely that such an individual will move beyond the limitations suggested by this classification schema.)
Communication Skills. Traditionally underserved persons who are deaf appear to have limited ability to communicate in written English. Their writing skills are often insufficient to communicate with other people for whom English is the primary language. Their ability to communicate with others through speech or speech reading was described as nonexistent to limited. In addition, their sign language communication skills were seen as ranging from none to the ability to convey basic needs.
Vocational skills. Responses indicate that traditionally underserved persons who are deaf are typically unemployed, work in sheltered workshops, or work in some type of supported work environment.
Academic Achievement. Traditionally underserved persons who are deaf were described as having a range of reading skills from none through reading skills at the third-grade reading level. Similarly, math skills were described as ranging from none through math skills at the third-grade level.
Social Skills. The level of social skills reported to best describe this population were (in order of ranking): poor problem-solving skills, difficulty establishing social support, poor emotional control, impulsiveness, low frustration tolerance, and aggressiveness. (It should be noted that the survey also included a number of prosocial skills such as appropriately assertive, accepts criticism, etc., but these were not endorsed by educators or rehabilitation professionals as descriptive of this population.)
Independent Living Skills. Responses indicated that traditionally underserved persons who are deaf do not typically live independently. The responses were evenly distributed with respondents indicating that these individuals most often live with family, live in an institution, or live independently with some type of ongoing supervision. Several respondents commented that traditionally underserved persons who are deaf can live independently with some transitional support.
Risk Factors. Several risk factors were identified as contributing to an individual's likelihood of becoming traditionally underserved. They included but were not limited to: the presence of additional disabilities, lack of family support, status as a member of a minority group, low socioeconomic status, inadequate program funding and time for professional intervention, inappropriate diagnoses, lack of access to services, upbringing in an environment where English is not the primary language, substance abuse, lack of appropriate role models, lack of conducive family or cultural traditions, and lack of access to interpreters.
History of Services
While these recent efforts focused on developing a consensual definition for traditionally underserved persons who are deaf, professionals have spent approximately 30 years attempting to address the needs of this population. Educators were the first professionals to notice that some young adults who are deaf fail to realize their potential. While many young adults graduated, became employed, and lived independently, others did not. Educators worried about the ability of these individuals to function in society. Special programs were initiated in residential schools to meet these needs, and many continue today under the umbrella of transitional services.
At the same time, the state vocational rehabilitation services, primarily concerned with issues related to employment, were turning away many deaf people as ineligible for services because they did not meet the "reasonable expectation for gainful employment" criterion. Many were classified as "handicap too severe" and denied services. Starting in the early 1960's, as a result of the advocacy efforts of several deafness professionals, the state-federal vocational rehabilitation program began to take an interest, express concern, and make efforts to provide services for this population.
During this time, a growing concern over the needs of traditionally underserved persons who are deaf led RSA to fund comprehensive programs for them. Federal funds were awarded to programs in Minnesota, Michigan, Massachusetts, and Missouri. One of the best known of these projects was established at Crossroads Rehabilitation Center in 1967 and expanded with federal funding in 1973 under the direction of Eugene Peterson, who became a leading proponent of services for underserved deaf people. The largest project funded to develop specific services was initiated by the Arkansas Rehabilitation Services in 1966. Housed at the Hot Springs Rehabilitation Center (HSRC), this comprehensive rehabilitation program was staffed by professionals who were knowledgeable about deafness and able to communicate with the clients in their preferred communication modality. As a result of these efforts, traditionally underserved persons who are deaf in Arkansas were able to succeed as vocational rehabilitation clients. Conclusions published in the HSRC final report (Rice, 1973) indicated that a comprehensive approach that combined people who are skilled communicators and who have knowledge and understanding of the consumer population make a difference in the success of their clients' rehabilitation.
Events that occurred during the 1970's, particularly the emphasis on severe disability that characterized the 1973 Rehabilitation Act, provided additional impetus for improved services for traditionally underserved persons who are deaf. As a result of this legislation, traditionally underserved persons who are deaf were less likely to be declared ineligible for rehabilitation services. This population also benefited from the 1978 Amendments to the Rehabilitation Act, which established a program of independent living services, thereby providing an opportunity for traditionally underserved persons who are deaf to receive needed assistance to supplement traditional rehabilitation services.
Building on the success experienced by the HSRC project and the more consumer friendly atmosphere of vocational rehabilitation in the 1970's, RSA funded additional service projects for traditionally underserved persons who are deaf. A total of 16 programs received special funding to address the needs of this population between 1963 and 1979; however, only a few remain in operation today (COED, 1988). The common characteristic in these programs was the development of specialized services with the concomitant employment of staff with the skills and preparation needed to deal effectively with this group. Development of these programs typically followed a critical mass format whereby large numbers of clients were served in a central location, thus justifying the expenditures related to operation. Unfortunately for many programs, when special funding dried up so did the ability to convene a critical mass in any single location. Many programs withered away with staff moving to other jobs.
Recently Renewed Focus
A number of events during the 1980's encouraged renewed interest in traditionally underserved persons who are deaf. The Developmental Disabilities Act of 1984 and the 1986 Amendments to the Rehabilitation Act provided opportunity for more effort to be made with persons with severe disabilities through transition, supported employment, and supported work initiatives. In addition, the National Institute on Handicapped Research (now the National Institute on Disability and Rehabilitation Research, or NIDRR) funded a Research and Training Center on Deafness and Hearing Impairment at the University of Arkansas (RT 31) to address the rehabilitation needs of deaf and hard of hearing people at all levels. Various projects conducted at this center showed the need for specialized services that would be delivered by skilled professionals for traditionally underserved persons who are deaf.
In addition, COED provided an opportunity to examine in-depth needs and issues related to traditionally underserved persons who are deaf. In its final report, COED made a recommendation--known throughout the field of deafness rehabilitation simply as Recommendation 20--that attention be given to the unique needs of this population within a population. Recommendation 20 reported that approximately 100,000 low functioning deaf persons leave school each year and their number increases by approximately 2,000 each year. The report also called for the establishment of 10 regional service centers as part of the solution to address the present needs of this population.
Partly as a result of the information presented in the COED report, the U.S. Department of Education funded a research and training center on low functioning deaf adults through NIDRR. This center is now the NIU-RTC, initially funded for 1990-1995. At the same time that the new RTC was being established, RSA provided temporary funding to establish and develop two model service centers for the provision of comprehensive rehabilitation services to low functioning deaf adults. The two programs funded for 1990-1991 were Project VIDA, a joint effort of the Hearing, Speech and Deafness Center (HSDC) in Seattle and of Seattle Central Community College, and the Special Services Program of the Vocational Services Unit at Lexington Center, Inc., in Jackson Heights (New York City). These programs--each using a different approach--offered intensive services to traditionally underserved deaf persons.
Project VIDA offered workplace literacy training using resources made available in conjunction with the community college. Classes to enhance reading, writing, and math skills were taught to all clients of the project. In addition, clients received independent living skills training and supported assistance as well as job placement and support. Activities included the development of resource manuals for client use as well as a brochure targeted to employers.
The Lexington Center program was based on a consortium approach that utilizes close to 37 agencies located in and around the greater New York City area and in New Jersey. Clients receiving services through any of the consortium sites were entered into the project client data base and all of the subsequent services offered were reported and tracked through this system. Advanced training for all consortium members served to enhance professionals' skills for delivering services. A videotape series and publication resulted from these efforts.
In 1991, at the end of the 1-year funding cycle for the service centers, RSA announced competition for two centers to be funded for 2 years each. The programs that received funding in this cycle were the Lexington Center in New York and the Southwest Center for the Hearing Impaired (SCHI) in San Antonio, Texas.
Southwest Center for the Hearing Impaired
SCHI, a privately operated comprehensive service center, offers intensive services in a residential setting and is able to accept clients from rural areas and from cities across the nation. Services include evaluation, independent living, work adjustment, and placement. An oncampus workshop provides the opportunity to evaluate and train for work skills, and a transitional program offers a series of independent living situations in community-based apartments that are supervised and managed through SCHI.
RSA announced a third round of competition in this area for 1993-1996. The programs that received funding in this cycle were the Lexington Center in New York and the Community Outreach Program for the Deaf (COPD) in Tucson, Arizona.
Community Outreach Program for the Deaf
COPD is a community-based organization affiliated with Catholic Community Services. COPD in Tucson, the Valley Center in Phoenix, and a new office in Flagstaff provide statewide services for people who are deaf and hard of hearing. The comprehensive services offered include vocational services (including training, supported employment, and placement), residential facilities, counseling, transitional services (school to work), interpreting services, telephone relay operation, and a program for people who are deaf-blind.
The 1992 Amendments to the Rehabilitation Act continue to provide the vehicle to deliver more appropriate services to traditionally underserved persons who are deaf. Presumed eligibility has the potential to open doors for these clients who, because of subjective, illinformed, or stereotypic misperceptions about the capabilities of this population, have been denied eligibility. In addition, Title VIII of the amended Act calls for special demonstration projects in supported employment for individuals who are low functioning and deaf or hard of hearing and services to low functioning adults who are deaf (Section 801, Nos. 107 and 109). The latter category funds the projects listed above (currently the Lexington Center and COPD programs) and the former is in competition during the winter of 1993-1994.
Issues in Service Delivery
Two facts become clear when reviewing the service delivery issues related to this target consumer population. First, this population has unique rehabilitation and independent living needs that are not currently being adequately addressed by the service delivery system. Second, this statement was as true 30 years ago as it is today. Issues in service delivery tend to center around the development of finance and personnel resources necessary to offer quality services that will have a positive impact on the lives of traditionally underserved persons who are deaf.
The 1989 COED report indicated that approximately two-thirds of the money spent on deaf clients through the statefederal vocational rehabilitation system is spent on the top one-third of the deaf population, those who function well enough to enter postsecondary education. The report further stated that "the vast majority of postsecondary-aged deaf persons are unemployed or seriously underemployed because approprate rehabilitation training and related services are not available." Under the current system, state rehabilitation agencies must provide time-limited services, and, consequently, they cannot always deliver comprehensive rehabilitation services to a population whose rehabilitation needs are long term and intensive (COED, 1989).
Many traditionally underserved persons who are deaf require services that are long term and intensive, which exemplifies the dilemma service providers face. Guidelines published in the most recent Model State Plan for Services for Individuals Who Are Deaf or Hard-of-Hearing (Watson, 1990) point to the need for personnel with specialized skills and programs tailored to the needs of this consumer population (Wright, Hanson, Musteen, & Tomlinson, 1990; Long, Quinn, Tomlinson, Hehir, Staffer, & Carr, 1990; Tomlinson, Holland, Long, & Melton, 1990). This model state plan recommended that persons who are deaf and have multiple disabilities be addressed as a separate category when assessing supportive employment needs. The plan also noted that these people will need ongoing services in times of transition and recommended that they be specifically targeted for independent living and supported employment programs.
Another issue that plagues the service delivery system for traditionally underserved persons who are deaf is that of information sharing. It is unfortunate that much of the information developed through the earlier programs has been lost due to personnel changes or the demise of those programs. Funded as service programs, many of the projects did not collect or save client service data, nor did they publish extensively. Professionals today must look to the model service centers and the NIU-RTC for information sharing and assistance in program development. These are the functions of the three funded programs, and, as such, it seems likely that programs will be developed or strengthened that will aid service providers in offering high quality services that will positively affect the lives of traditionally underserved deaf persons.
The future for enhanced service delivery to this target population rests primarily with the efforts of the RSA-funded service centers and the NIDRR-funded NIU-RTC. The fundamental goals of the NIU-RTC are to conduct programmatic research, to translate the research findings into usable products for service delivery personnel and consumers, to disseminate this new information through training and technical assistance programs, and to evaluate the use and impact the information has had on traditionally underserved persons who are deaf. The success of the participatory action research approach used by the NIU-RTC is contingent upon a reciprocal exchange of information between the NIU-RTC and its network of six regional affiliates. Each affiliate agency has its own well-established program for delivering services to traditionally underserved persons who are deaf. An onsite coordinator was selected from each affiliate agency to participate in project development, data collection, and resource development and to help conduct training and technical assistance projects. It is interesting to note that all four recipients of the RSA funds to serve as model service delivery centers (i.e., Project VIDA's Speech, Hearing and Deafness Center, the Lexington Center, the Community Outreach Program for the Deaf, and the Southwest Center for the Hearing Impaired) also serve as regional affiliates to the NIU-RTC.
The NIU-RTC research, resource development, and training efforts, together with the combined efforts of the RSA-funded service centers, will result in the creation of new information that will enhance the current delivery of services to traditionally underserved deaf persons. These efforts will result in new knowledge about the population, interventions that are useful, enhanced knowledge and competency on the part of professionals serving this population, and data on effective means of delivering services. In addition to an expanded knowledge base, additional programs must be developed to meet the direct service needs of this population. Through an effective partnership of research and practice, a foundation will be developed upon which new programs that will enhance the quality of life for traditionally underserved persons who are deaf can be built.
1. Commission on Education of the Deaf (1988). Toward equality: Education of the deaf. Washington, DC: U.S. Government Printing Office.
2. Long, N.M. (1991, May). Provision of services to traditionally underserved persons who are deaf: An historical perspective. Presented at Biennial Conference of the American Deafness and Rehabilitation Association.
3. Long, N.M., Quinn, N., Tomlinson, P., Hehir, R., Stauffer, L., & Carr, N. (1990). Transition services throughout the life cycle. In D. Watson (Ed.), Model state plan for rehabilitation of individuals who are deaf and hard of hearing. Little Rock, AR: Rehabilitation Research and Training Center on Deafness and Hearing Impairment.
4. Peterson, E. (1981). The two sides of habilitation/rehabilitation services for the deaf. Journal of Rehabilitation of the Deaf, 14, 14-25.
5. Rice, B. Douglas (May, 1973). Hot Springs rehabilitation center: A comprehensive facility program for multiply handicapped deaf adults. Final report. Fayetteville, AR: Arkansas Rehabilitation Research and Training Center.
6. Tomlinson, P., Holland, S., Long, N., & Melton, C. (1990). Supported employment services for hearing impaired clients. In D. Watson (Ed.). Model state plan for rehabilitation of individuals who are deaf and hard of hearing. Little Rock, AR: Rehabilitation Research and Training Center on Deafness and Hearing Impairment.
7. Watson, D. (1990). Population. In D. Watson (Ed.), Model state plan for rehabilitation of individuals who are deaf and hard-of-hearing. Little Rock, AR: Rehabilitation Research and Training Center on Deafness and Hearing Impairment.
8. Whyte, W.F. (Ed.) (1990). Participatory action research. Newbury Park, CA: Sage Publications.
9. Wright, G., Hanson, J., Musteen, K., & Tomlinson, P. (1990). The rehabilitation process. In D. Watson (Ed.), Model state plan for rehabilitation of individuals who are deaf and hard of hearing. Little Rock, AR: Rehabilitation Research and Training Center on Deafness and Hearing Impairment.
This work was funded by the Rehabilitation Services Administration and the National Institute on Disability and Rehabilitation Research (grant #H133B00014), Office of Special Education and Rehabilitative Services, U.S. Department of Education. Opinions expressed herein are those of the authors and should not be attributed to the U.S. Department of Education. The authors are indebted to David W. Myers, Executive Director of the Texas Commission on the Deaf, for his valuable review, comments, and suggestions for revision of this manuscript.
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|Date:||Dec 22, 1993|
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