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FY 2004-2008 Health Disparities Strategic Plan

National Institute on Deafness and Other Communication Disorders Health Disparities Strategic Plan Fiscal Years 2004–2008

MISSION/VISION STATEMENT

The mission of the National Institute on Deafness and Other Communication Disorders (NIDCD) is to conduct and support basic and clinical research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. Basic and clinical research focused on understanding the normal processes and disorders of human communication are motivated both by intrinsic scientific interest and importance to the health of the Nation.

STRATEGY FOR ADDRESSING HEALTH DISPARITIES

The Director, NIH, has requested that each Institute and Center at NIH develop a Strategic Plan for Reducing Health Disparities. In preparation for developing a Strategic Plan on Reducing Health Disparities, the NIDCD sought broad input from the NDCD Advisory Council and Board of Scientific Counselors, as well as 170 of its constituent groups. Several research opportunities to understand the basis for health disparities within the purview of NIDCD were identified.

1.0 AREAS OF EMPHASIS IN RESEARCH

1.1 Area of Emphasis One: Develop new or improved approaches for detecting or diagnosing the onset or progression of disease and disability in hearing and language disorders

In this age of information, communication and technology skills are central to a successful life for all Americans, and the labor force of the 21st century will require intense use of these skills. However, for approximately one out of six Americans with communication disabilities and the families who support them, facing each day can be a challenge. The simple acts of speaking, listening, of making their wants and their needs understood are often impossible. Hearing and language disorders can exact a significant economic, social, and personal cost for many individuals. In order to address these problems, society needs a more complete understanding of the mechanisms underlying normal communication and the causes of human communication disorders.

1.1.1 Objective One: Develop Language Tests for Non-Standard English

As the United States becomes more culturally, racially, and linguistically diverse, it has become increasingly difficult to discriminate between language disorders and language differences in children. Problems in language assessment arise because the majority of currently available measures are designed for identifying speech and language problems in Standard English speakers. Children of multicultural populations are often misdiagnosed as language impaired because culturally appropriate language assessment instruments or procedures are unavailable. In addition, other children from multicultural populations who have genuine language disorders that are in need of remediation may go unrecognized.

1.1.1.1 Action Plan

In response to this need, the NIDCD is supporting projects to develop language tests for non-standard English speakers. NIDCD-supported scientists are developing language tests for children who speak Black English and for bilingual Hispanic children. Investigators are collecting cross-sectional data on language abilities in normally developing four- to six-year-old speakers of Black English and bilingual Hispanic children whose primary language is not English or is a non-standard form of English. These data are aimed at developing items for a language assessment instrument or procedure that could be used to differentiate between language impairment and normal language development in these two populations.

The Diagnostic Evaluation of Language Variation (DELV) was recently published, the direct result of an NIDCD contract to create a language assessment instrument for speakers of Black English. The test has met with tremendous enthusiasm in the research and clinical realm, and will play a major role in differentiating language impairment and normal language development. A comparable test for bilingual Hispanic children is currently being developed.

1.1.1.2 Performance Measures

For speakers of both Black English and bilingual Hispanic children whose primary language is not English or is a nonstandard form of English:

  • Collect cross-sectional data on language abilities in normally developing four to six year old children.
  • Document age-appropriate language milestones/behaviors including aspects of phonology, syntax, semantics, and pragmatics.
  • Use data collected to develop items for a language assessment instrument or procedure which could be used to differentiate between language impairment and normal language development.
  • Conduct a study to determine the reliability and validity of the individual items and the overall language assessment or procedure.
1.1.1.3 Outcome Measures
  • Track the use of the language assessment instrument or procedure through requests to use it and/or through citations of it in published literature.

1.1.2 Objective Two: Establish prevalence estimates for Specific Language Impairment (SLI) in African American children

Specific language impairment (SLI) is a delay in language development. About eight percent of American children in kindergarten have a disorder called specific language impairment (SLI). These children have difficulty developing and using language. These difficulties affect not only speaking but also reading and writing tasks in school.

At present there are no data on the prevalence of SLI in African American children. As a result, speakers of African American English (AAE) risk being incorrectly classified as language disordered. These children may be receiving unneeded services, while other AAE speakers who do suffer from SLI may not be identified and are not receiving needed services.

1.1.2.1 Action Plan

By supporting research on prevalence and clinical markers of SLI in AAE speakers, NIDCD hopes to improve diagnosis of SLI in AAE speakers and to inform both public policy decisions and theories regarding the cross-linguistic usefulness of clinical markers for SLI.

1.1.2.2 Performance Measures
  • Improve diagnosis of SLI in AAE speakers.
  • Inform public policy by developing accurate prevalence estimates for SLI in AAE speakers.
1.1.2.3 Outcome Measures
  • Track the use of prevalence estimates for SLI in AAE speakers by monitoring publications in the scientific literature.
  • Track the use of clinical markers of SLI in AAE speakers by monitoring references to them in scientific literature.

1.1.3 Objective Three: Establish a website for parents, health-care professionals, educators, and others interacting with hearing-impaired children to help them determine the most effective treatments.

Adults trying to provide the best environment for hearing impaired children are faced with a broad and sometimes confusing range of treatment and support options.

1.1.3.1 Action Plan

NIDCD is supporting development of a website to help parents, healthcare workers, daycare providers, educators, and other individuals and institutions as they make decisions about how best to help hearing impaired children. The website will provide accurate information about hearing loss, including frequently asked questions (FAQs) answered by a multidisciplinary team of experts, links to other useful hearing loss sites, firsthand accounts of other families facing similar situations, ideas on how to communicate with babies and toddlers who are deaf, and an interactive decision aid to help individuals evaluate different treatment options. The use and impact of the website will be evaluated, and the evaluation will include measuring the participation of traditionally underserved groups, such as the rural poor, rural, and inner-city minorities, young households, and female-headed households, in the decision-making process.

1.1.3.2 Performance Measures
  • Develop and implement a website to facilitate the decision-making process for parents and others working with hearing impaired children.
  • Design and modify the site as needed to address the needs of underserved children with hearing loss and their families, including the rural poor, rural and inner-city minorities, young households, female-headed households, and other infrequent Internet users.
  • Market and disseminate information about the site to parents, professionals, and children with hearing loss and assist underserved communities in gaining access to the site.
1.1.3.3 Outcome Measures
  • Evaluate the use of the site and the impact of the information obtained, including measuring the participation of traditionally underserved groups, such as the rural poor, rural and inner-city minorities, young households, and female-headed households, in the decision-making process. Evaluation and impact will be empirically measured using the following two techniques:
    1. Administering a test to naive outreach focus groups followed by two subsequent tests after six and twelve months of access to the website.
    2. Collecting responses to an online inventory questionnaire.

2.0 AREAS OF EMPHASIS IN RESEARCH CAPACITY

2.1 Area of Emphasis One: NIDCD Student Research Trainee Program: Partnership Program (ended in FY 2005)

In 1994, the NIDCD implemented a student research trainee program, in collaboration with the National Center on Minority Health and Health Disparities, with four institutions including the Atlanta University Complex, the University of Puerto Rico, Gallaudet University, and the University of Alaska. The program's initial purpose was to recruit and retain individuals under-represented in the human communication sciences. Currently, students are selected from minority and majority institutions throughout the country to conduct research in cutting-edge NIDCD laboratory facilities.

2.1.1 Objective One: Recruit Individuals from Under-represented Groups to Careers in Research in Human Communication through In-depth Experiences at the NIDCD.

2.1.1.1 Action Plan

The program began with the objectives to expose students to cutting-edge research, however, the majority of current recruits are exposed to research prior to their participation in the program, thus, the program's new objectives include sharpening the students' competitiveness in biotechnology techniques, competency in human communication science, and increasing their chances for beginning a scientific publication record. The aforementioned opportunities help the students advance in graduate and medical education in the sciences, as well as a career in research. An NIDCD scientific mentor is assigned to each student to ensure quality learning. Complementary learning includes a series of lectures on science and career development, director's scientific journal clubs and scientific oral and poster presentations. Since the program's initial class, 101 participants have trained under the program.

2.1.1.2 Performance Measures
  • Tracking and monitoring of the program participants. A database has been established to track the participants from the beginning when they started the program as well as when they ended the program. The database also notes the research training and additional advanced education that they have pursued in the present, as well as whether they have pursued research careers. Key measures include, but are not limited to, academic training in higher education in science and medicine, careers in research, publication records, scientific presentations, and grant activity.
2.1.1.3 Outcome Measures
  • Produce increased participation of women, disabled, and minority researchers. In addition, increase participation of under-represented groups working in the field of human communication research.

2.1.2 Objective Two: The Division of Intramural Research (DIR) of the National Institutes on Deafness and Other Communication Disorder (NIDCD) and Howard University Graduate School Partnership

In 2002, the NIDCD and Howard University's Graduate School joined in an official partnership to increase the participation of minority faculty and graduate students in human communication research. Since the program's beginning, the partnership has had two graduate students complement their academic training to conduct research in cutting-edge NIDCD research laboratories. The extended research agreements will enhance the student's dissertation work in research.

2.1.2.1 Action Plan

The program includes the following:

  • Research training and mentoring within the NIDCD DIR research laboratories.
  • NIDCD mentors serve on thesis committees and attend all examination and committee meetings of Howard University students whom they supervise.
  • Openness and proactive efforts in establishing collaborative research efforts with Howard University faculty, students, and staff.
  • Continuing and frequent communication with faculty involved with individual students so that when Howard University students are working primarily in DIR/NIDCD facilities, there remains frequent communication with their HU co-mentors and other staff.
  • Promulgation and communication of this collaborative effort.
2.1.2.2 Performance Measures
  • An evaluation process is being established to measure the program's success. Potential measurements of success may include: completion of a doctoral degree in human communication sciences, increased publication record, participation in grant activity, and pursuing a career in human communication research.
2.1.2.3 Outcome Measures
  • Collaborations between scientists to gain more participation of science projects inclusive of minority populations.
  • Increased participation of minorities in the field of human communication sciences.

3.0 AREAS OF EMPHASIS IN COMMUNITY OUTREACH, INFORMATION DISSEMINATION, AND PUBLIC HEALTH EDUCATION

3.1 Area of Emphasis One: Develop Targeted Public Health Education Programs

3.1.1 Objective One: Increase Public Awareness and Prevent Noise-Induced Hearing Loss

Approximately 10 percent (22 million) of American adults between 20 and 69 years old have suffered permanent damage to their hearing from exposure to loud sounds or noise at work or in leisure activities. Noise induced hearing loss is more prevalent in men than in women. Exposure to harmful sounds causes damage to the sensitive hair cells of the inner ear, eventually affecting hearing. These structures can be injured by noise in two different ways: from an intense brief impulse, such as an explosion from a firecracker; or from continuous exposure to noise, such as in a woodworking shop.

3.1.1.1 Action Plan

The WISE EARS!® campaign was initiated on July 4, 1999 and now includes a coalition of nearly 100 organizations of workers, employers, health and medical professionals, advocates for children and older Americans, teachers, parents, children, unions, industry, federal, regional, and local government agencies and institutes, and the general public. The WISE EARS!® campaign health information has been published nationwide in over 1,388 newspapers with an estimated total readership of 117.5 million. The campaign is designed to reach minority individuals who are identified by specific occupational or recreational risk. Future plans include increasing the coalition membership and expanding the campaign to reach these at risk individuals.

In addition, special outreach efforts are underway to reach the vulnerable population of school children through efforts directed to the children themselves and through their teachers, and their families. This will include the use of a teacher's guide and instructions developed for grades 3–6 in Spanish and English, "I Love What I Hear" and collaborative efforts with Girls Scouts USA throughout the 50 states. This outreach includes wide dissemination of the new curriculum for grades 7–8 in English, "How Your Brain Understands What Your Ear Hears," targeting students from 12–18 years old in 12,000 schools. This curriculum has been tested to be used by teachers nation-wide in urban, rural and suburban, public, and private settings.

There will be continuing initiatives to reach Hispanic/Latino/Latina individuals through participation with various Spanish language and Hispanic interest-meetings, exhibit opportunities, and collaborative efforts with the NIH Hispanic Communications Work Group that includes the Radio Unica/Wal-Mart Hispanic Latino/Latina Health Fair series. Most NIDCD health information materials are available in Spanish. An initiative to reach the rural community with advice about hunting and farming equipment uses shooting instructors as the dissemination source. WISE EARS!® information is provided to these individuals through their classroom instructors.

3.1.1.2 Performance Measures
  • Increase Public Awareness through education and mass media efforts.
  • Expand the campaign on the national level by increasing the coalition membership.
3.1.1.3 Outcome Measures
  • Track outreach efforts through data provided by North American Precis (NAPS) to increase the awareness of the importance of protection against noise-induced hearing loss amongst the under-represented groups. NAPS will target Spanish language populations specifically.

3.2 Area of Emphasis Two: Early Hearing Detection and Intervention

Each year, approximately two to three out of 1,000 babies born in the United States have a detectable hearing loss, which can affect their speech, language, social, and cognitive development. More lose their hearing later during childhood. Many of these children may need to learn speech and language differently, so it's important to detect deafness or hearing loss as early as possible.

3.2.1 Objective One: Increase Public Awareness on the Importance of Newborn Hearing Screening and Communication Options

3.2.1.1 Action Plan

NIDCD established the Early ID Ad Hoc Committee in January 2000. It now includes representatives from 14 organizations. The committee meets quarterly to create, share, and participate in collaborative efforts. These efforts focus on increasing the parents and families awareness of the importance in having a child's hearing screened, options for their child if he or she is diagnosed with hearing loss, and emphasizes initiatives to increase follow through for children who are believed to have hearing loss at birth.

NIDCD began a multi-year campaign called "Labor Day" in September of 2003 and will expand that initiative in 2004 with the support of work group members. The Labor Day campaign is called that because more babies are born around this time of year than any other. The campaign is designed to remind parents to have their newborn babies' hearing screened.

The Hispanic/Latino/Latina community does not receive sufficient healthcare information. Outreach to this community includes efforts to disseminate information in Spanish about hearing screenings, follow-through visits, and how medical professionals can help increase the number of infants who return for hearing screening evaluations. The campaign will also use the Hispanic/Latino/Latina media services to provide information that will reach their communities. Another focus is to make information available in the Combined Health Information Database (CHID) so that resources are available to healthcare professionals who work with these communities.

3.2.1.2 Performance Measures
  • Increase knowledge about the importance of hearing screening and follow through for under-represented groups to ensure improved communication, occupational, and financial outcomes for these children.
  • Increase knowledge of professionals about the importance of follow through after hearing screening for appropriate interventions.