Rochester Prevention Research Center: National Center for Deaf Health Research NCDHR Partnering with

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Rochester Prevention Research CenterNational
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

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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

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Health Data
African Americans
White Americans
Deaf 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
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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

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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

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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

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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)

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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

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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!

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The Deaf community is not homogenous
Each of these groups has very different
communication needs and cultural distinctive
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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

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ASL Use in North America

• Deaf Americans and Canadians
• CODAs (Children of Deaf Adults)
• Hearing spouses
• Siblings
• Hearing parents who may have learned ASL
• ASL interpreters
• Bottom line ASL use may not necessarily mean the
  user is Deaf

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Culturally Sensitive Terminology
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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

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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

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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 2008
• Future thinking Universal Design

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The problem is not that the students do not
hear. The problem is that the hearing world does
not listen. The Rev. Jesse L. Jackson Deaf
President Now! Gallaudet University, 1988

QUESTIONS?