DISCLAIMER:
Links to organizations outside of CDC are included for information
only. CDC has no control over the information at these sites. Views
and opinions of these organizations are not necessarily those of
CDC, the Department of Health and Human Services (HHS), or the U.S.
Public Health Service (PHS).
Related links are organized into one of the following
categories based on the information they provide or the type of
organization they represent. Please note that some organizations provide
information about a variety of topics related to infant hearing loss and
EHDI.
Deafness and hearing loss
The Alexander Graham
Bell Association for the Deaf and Hard of Hearing (AG Bell) helps
families, health care providers and education professionals understand
childhood hearing loss and the importance of early diagnosis and
intervention. Through advocacy, education, research and financial aid,
AG Bell helps to ensure that every child with hearing loss has the
opportunity to learn to listen and talk. With chapters located in the
United States and a network of international affiliates, AG Bell
supports its mission: Advocating Independence through Listening and
Talking!
Baby Hearing.org
website was developed by Audiologists, Speech-Language Pathologists,
Teachers of the Deaf, Geneticists, Doctors and Parents of Deaf and Hard
of Hearing Children at the
Boys Town National Research Hospital. This site includes information
about infant hearing loss, how the ear works, family issues and some
available intervention options.
Better Hearing
Institute provides comprehensive information on hearing loss,
tinnitus, and hearing aids, as well as a directory of hearing care
providers (audiologists, hearing instrument specialists, and
otolaryngologists ).
The Combined Health
Information Database (CHID) is a database produced by health-related
agencies of the federal government. This database provides titles,
abstracts, and availability information for health information and
health education resources. CHID lists a wealth of health promotion and
education materials and program descriptions that are not indexed
elsewhere.
DeafMD web
site provides health information in American Sign Language to the
Deaf and Hard of Hearing population. DeafMD contains four distinct
sections: Diseases & Illnesses, Understanding Tests, News, and Find
a Deaf Friendly Doctor.
Go Hear
is dedicated to being the best source of information for families of
infants and children diagnosed with a hearing loss and the professionals
who work with these individuals.
Hereditary
Hearing Loss Homepage Web site provides current information on
genetic causes of hearing loss.
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Intervention and family support services
The Alexander Graham
Bell Association for the Deaf and Hard of Hearing (AG Bell) helps
families, health care providers and education professionals understand
childhood hearing loss and the importance of early diagnosis and
intervention. Through advocacy, education, research and financial aid,
AG Bell helps to ensure that every child with hearing loss has the
opportunity to learn to listen and talk. With chapters located in the
United States and a network of international affiliates, AG Bell
supports its mission: Advocating Independence through Listening and
Talking!
American Society
for Deaf Children (ASDC) is an organization of parents and
families that advocates for deaf or hard of hearing children's total
quality participation in education, the family and the community. This
site provides information and resources to families and parents related
to hearing loss.
Family Voices is a national organization concerned with all
children that have special health care needs. The organization is a
clearinghouse for information and education concerning the health care
of children with special health needs.
Hands & Voices
National is a parent-driven, non-profit organization supporting
families with children who are deaf or hard of hearing irregardless of
communication method or mode. Membership includes families,
professionals, and individuals who are deaf or hard of hearing who
collaborate to empower families with newly identified babies, to
advocate for better educational outcomes, and to provide information and
technical support on related subjects without a bias towards one form of
communication over another.
Hearing, Speech and
Deafness Center: A resource center in the Seattle, Washington area.
John Tracy
Clinic is a non-profit organization which provides worldwide and
without charge, parent-centered services to young children with a
hearing loss. Services include audiological testing, parent/infant
program s, parent classes, a preschool, and a correspondence course.
Laurent Clerc National Deaf Education Center provides information on
various topics related to deafness, including topics of interest to
parents of children with hearing loss & multicultural issues.
National Association of
the Deaf (NAD) is the oldest and largest organization
representing people with disabilities in the United States. This Web
site provides information on programs and activities including
grassroots advocacy and empowerment, captioned media, certification of
American Sign Language professionals, certification of sign language
interpreters, deafness-related information and publications, legal
assistance, policy development and research, public awareness, and youth
leadership development.
National
Policy Center for Children with Special Health Care Needs (NPCSHCN)
is concerned with the promotion of complete, family-centered systems of
health care for children with special health care needs and their
families. The Center is dedicated to producing information that is
relevant to benefit managed care organizations, state agencies,
families, and program administrators.
Net
Connections for Communication Disorders & Sciences provides many
valuable resources for professionals and students in communication
disorders and sciences as well as for people with communication
disabilities and those who are part of their lives.
Opening Doors: Technology and Communication Options for Children with
Hearing Loss. Parents of children with hearing loss can find helpful
information and resources in this publication produced for the Office of
Special Education and Rehabilitative Services (OSERS) by the Academy for
Educational Development (AED). This publication provides background on
early intervention, the use of technology and other support available to
children and their families.
Raising and Educating a Deaf
Child offers a webpage designed to answer questions from parents,
teachers and other professionals who work with children who are deaf or
hard of hearing. The information on the site is intended to provide
complete and objective information. Questions from the community are
encouraged.
"Raising Deaf
Kids" provides information and resources on hearing loss for
parents. This is a web site of The Deafness and Family Communication
Center (DFCC) at the Children's Hospital of Philadelphia, which gives
clinical services for deaf and hard-of-hearing children and teenagers,
does research on how hearing loss affects children, teenagers and their
families, and gives clinical services for deaf and hard-of-hearing
children and teenagers.
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Research
and technical assistance centers
Boys Town National
Research Hospital has Centers for research and clinical services for
hearing loss in children.
Gallaudet University
is the world leader in liberal education and career
development for deaf and hard-of-hearing undergraduate students.
Graduate degree programs and continuing education courses are
available to deaf, hard-of-hearing, and hearing students.
National Center
for Hearing Assessment and Management Web site provides information
on newborn hearing screening programs, legislation, equipment, and
issues. The site also provides an implementation guide,
references, and links to other sites.
Marion Downs National Center for Infant Hearing provides
information on the Marion Downs National Center on Infant Hearing for
the coordination of statewide systems for screening, diagnosis, and
intervention for newborns and infants with hearing loss.
National Institute
on Deafness and Other Communication Disorders is the federal
government's focal point for biomedical and behavioral research in human
communication. The Institute supports and conducts research on the
normal and disordered processes of hearing, balance, smell, taste,
voice, speech and language. This Web site also has the
NIDCD Clearinghouse which disseminates information about disorders
of human communication.
National
Technical Institute for the Deaf (NTID) is the world's first and
largest technological college for students who are deaf or
hard-of-hearing. It is one of eight colleges of Rochester Institute
of Technology (RIT), a privately endowed, coeducational university
that is student-centered and career-focused.
The
SKI-HI Institute is devoted to providing information for assisting
infants, toddlers, and young children with disabilities and their
families through research, development, promising practices,
training, technical assistance, and information sharing. The Institute
is a unit of the College of Education, Department of Communicative
Disorders and Deaf Education at Utah State University and is active
nationally. The website describes the programs and resources that are
available."
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Federal agencies
Health Resource Services Administration (HRSA) Maternal and Child
Health Bureau: A federal agency that administers the Universal Newborn
Hearing Screening program, which awards grants to states.
National Institute
on Deafness and Other Communication Disorders is the federal
government's focal point for biomedical and behavioral research in human
communication. The Institute supports and conducts research on the
normal and disordered processes of hearing, balance, smell, taste,
voice, speech and language. This Web site also has the
NIDCD Clearinghouse which disseminates information about disorders
of human communication.
The Office of Special Education and Rehabilitative Services
(OSERS) is a part of the U.S. Department of Education and is committed
to improving results and outcomes for people with disabilities of all
ages.
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Professional
associations
The Alexander Graham
Bell Association for the Deaf and Hard of Hearing (AG Bell) helps
families, health care providers and education professionals understand
childhood hearing loss and the importance of early diagnosis and
intervention. Through advocacy, education, research and financial aid,
AG Bell helps to ensure that every child with hearing loss has the
opportunity to learn to listen and talk. With chapters located in the
United States and a network of international affiliates, AG Bell
supports its mission: Advocating Independence through Listening and
Talking!
The AG Bell
Academy for Listening and Spoken Language® (the Academy) is an
independently governed, subsidiary corporation of the Alexander
Graham Bell Association for the Deaf and Hard of Hearing. The
Academy was established in 2005 and envisions a future where
individuals and families will have qualified listening and spoken
language professionals available in their immediate geographic area.
The Academy is uniquely positioned to advance the revolutionary
global opportunity for deaf or hard of hearing individuals to listen
and talk via proven technologies and with guidance and education
from certified professionals.
American
Academy of Audiology is a professional organization dedicated to
providing quality hearing care to the public. This Web site provides
consumer and professional resources related to hearing care.
American Academy of
Otolaryngology-Head and Neck Surgery is the world's largest
organization of physicians dedicated to the care of ear, nose, and
throat disorders. This site provides health tips and information related
to hearing disorders.
American Academy of
Pediatrics Web site contains information, alerts, and resources
related to the physical, mental, and social health of infants, children,
adolescents, and young adults.
Pediatrics
is an online publication of the American Academy of Pediatrics journal.
The following is an article from one of their publications:
Universal Newborn Hearing Screenings: A Three Year Experience.
American
Speech-Language-Hearing Association (ASHA) Newborn & Infant Hearing
Screening Action Center provides information on newborn hearing
screening guidelines and current legislation.
American Academy of
Family Physicians (AAFP) is a national, non-profit medical
association of more than 88,000 members (family physicians, family
practice residents, and medical students). This Web site provides
information to professionals within the medical field.
Joint Committee on
Infant Hearing was established in late 1969 and composed of
representatives from audiology, otolaryngology, pediatrics, and nursing.
The Committee's primary activity has been publication of position
statements summarizing the state of the science and art in infant
hearing, and recommending the preferred practice in early identification
and appropriate intervention of newborns and infants at risk for or with
hearing loss.
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State
Related Websites
Texas Department of Health-Audiology Services provides
hearing-related information and resources within the state of Texas.
University of Colorado Department of Speech, Language, and Hearing
Sciences
provides information related to the programs and activities in this
university department.
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Other
EHDI Related Information
Gallaudet
University provides information on the world's only university for
deaf and hard-of-hearing undergraduate students. Graduate degree
programs and continuing education courses are available to deaf,
hard-of-hearing, and hearing students.
Health Insurance Portability and Accountability Act
For a summary of final modifications to HIPAA's Privacy Rule please visit
http://www.hhs.gov/ocr/hipaa/. Additional information pertaining to
Health Information Privacy and the use of Electronic Transaction Code
Sets can be found at the American
Speech-Language-Hearing Association website under Legislative Issues.
National Conference of State Legislators information on Newborn
Hearing Screening. Site includes information about states with mandated
early hearing screening programs.
US Preventive Services Task Force report on Newborn Hearing Screening,
Third Edition. This site provides information on the USPSTF
report on newborn hearing screening and related articles.
Date:
July 13, 2009
Content source: National Center on Birth Defects and Developmental
Disabilities
