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Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) Partnering with members of the ASL community: a linguistic minority group. Jess Cuculick, MSW, MS.SEd Chair, Deaf Health Community Committee (DHCC) A Community Committee of NCDHR Matthew Starr, MPH - PowerPoint PPT Presentation
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Deaf Health Community Committee A Community Committee of NCDHR
Rochester Prevention Research Center:National Center for Deaf Health Research (NCDHR)
Partnering with members of the ASL community: a linguistic minority group
Jess Cuculick, MSW, MS.SEd
Chair, Deaf Health Community Committee (DHCC)
A Community Committee of NCDHR
Matthew Starr, MPH
Communication Team Leader
NCDHR
Deaf Health Community Committee A Community Committee of NCDHR
Objectives for Today
Increase awareness of barriers to health information and services
Gain basic understanding of Deaf culture, ASL & perspectives
Partner with the Deaf Community
Deaf Health Community Committee A Community Committee of NCDHR
Health Data
African AmericansWhite Americans
Cancer 193.9 per 100,000 243.1 per 100,000 No data
Diabetes 23.0 per 100,000 49.2 per 100,000 No data
Infant Mortality 5.7 per 1,000 live births 13.3 per 1,000 live births No data
Adult Immunization 70.2 % 52% No data
Source: www.cdc.gov
Deaf Americans
Deaf Health Community Committee A Community Committee of NCDHR
Exclusive Practices
No systematic and routine collection of data on ASL use in the general population
US Census Rely on estimates
Interpreting Services Telephone Relay Services Deaf-focused Organizations Deaf Schools & Colleges
Deaf Health Community Committee A Community Committee of NCDHR
Communication inaccessibility and insensitivity in healthcare settings
More difficulty communicating with physicians than hearing patients
Low “fund of information”
Unfamiliarity with family health histories
Health disparities suspected
Most deaf children do not participate in their own healthcare
Deaf Health Community Committee A Community Committee of NCDHR
The Deaf Community: An Overlooked Population
Very little or no data about Deaf Health Health surveys are typically done by
telephone or in print Deaf people are not usually targeted in
health surveys (i.e., BRFSS, YRBS, etc.) Deaf community is a cultural & linguistic
population
Deaf Health Community Committee A Community Committee of NCDHR
Rochester Prevention Research Center: NCDHR
Sponsored by Centers For Disease Control and Prevention
Goal is to promote health and prevent disease at the community level
Prerequisite: Center must partner with specific community in
all phases of research program (CBPR)
Deaf Health Community Committee A Community Committee of NCDHR
Rochester Prevention Research Center: NCDHR
NCDHR is the first of its kind nationally National External Advisory Committee Deaf Health Community Committee (DHCC)
Town Hall Meetings Staff members who are members of the Deaf
Community The ASL Community is a partner
Deaf Health Community Committee A Community Committee of NCDHR
DEAF-WORLD
ASL is the primary language used No barriers No power inequities Shared culture values, mores and goals Members socialize/espouse each other Some hearing people are members too!
Deaf Health Community Committee A Community Committee of NCDHR
The Deaf community is not homogenous
ASL Users (Culturally Deaf) Oral deaf Hard-of-hearing Late-deafened With Cochlear implants Deaf-Blind Deaf with additional disabilities
National Association of the Deaf (1880) Deaflympics (1924) World Federation of the Deaf (1951) Rainbow Alliance of the Deaf (1977) National Black Deaf Advocates (1982) Deaf Women United (1984) National Council of Hispano Deaf and Hard of Hearing National Asian Deaf Congress (1994) Intertribal Deaf Council (1994)
Each of these groups has very different communication needs and cultural distinctive
Deaf Health Community Committee A Community Committee of NCDHR
American Sign Language
A visual language created by Deaf people Neither written nor spoken language A fully developed, natural language which has no grammatical relationship with English Not a universal sign language
Deaf Health Community Committee A Community Committee of NCDHR
ASL Use in North America
Deaf Americans and Canadians CODAs (Children of Deaf Adults)Hearing spousesSiblingsHearing parents who may have learned ASLASL interpreters
Bottom line: ASL use may not necessarily mean the user is Deaf
Deaf Health Community Committee A Community Committee of NCDHR
Culturally Sensitive Terminology
Inappropriate Appropriate
Hearing Impaired
Deaf-Mute
Deaf and Dumb
Deaf
Hard-of-Hearing
Deaf Health Community Committee A Community Committee of NCDHR
Perspectives
Medical Model Cultural Model The Deaf people do not view themselves as
“disabled” US government policy focuses on public
health & social welfare, and leaves unrecognized social or linguistic issues
Deaf Health Community Committee A Community Committee of NCDHR
HHS Office of Minority Health
To improve and protect the health of racial and ethnic minority populations
Eliminate health disparities
Mandated by the Congress in 1994
Deaf Health Community Committee A Community Committee of NCDHR
Americans with Disabilities Act (ADA)
Rochester (NY) is ahead, many parts of country are behind Accessibility Law Exempt: Private Clubs and Religious
Organizations Unfunded Mandate Some progress Amendment Act of 2008Future thinking: Universal Design
Deaf Health Community Committee A Community Committee of NCDHR
“ The problem is not that the students do not hear. The problem is that the hearing world does not listen. ”
The Rev. Jesse L. JacksonDeaf President Now!
Gallaudet University, 1988
QUESTIONS?