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Deaf-Blindness: National Resources and Organizations
NLS Reference Circulars
Deaf-Blindness: National Resources and Organizations
2004
Introduction
This reference circular has been compiled in cooperation with
DB-LINK: The National Information Clearinghouse on Children Who
Are Deaf-Blind, a federally-funded information and referral service on
deaf-blindness in children, birth through age twenty-one.
Contact information for DB-Link.
Section one of the circular describes national resources and
organizations related to deaf-blindness and section two includes a
selected bibliography of factsheets, pamphlets, books, magazines and
newsletters, web sites, videos, and other materials.
Contents
Resources and Organizations
Selected Bibliography
Resources and Organizations
- American Association of the Deaf-Blind (AADB)
- 814 Thayer Avenue, Suite 302
Silver Spring, MD 20910-4500
(301) 495-4403 voice
(301) 495-4402 TTY
(301) 495-4404 fax
info@aadb.org
www.aadb.org
- Principal publication: The Deaf-Blind American, quarterly
- AADB is a national consumer advocacy organization with a mission to
enable deaf-blind persons to achieve their maximum potential through
increased independence, productivity, and integration into the
community. Holds biennial conferences where deaf-blind people come
together for education, support, and socialization.
- American Council of the Blind (ACB)
- 1155 15th Street NW, Suite 1004
Washington, DC 20005
(202) 467-5081
(800) 424-8666
(202) 467-5085 fax
info@acb.org
www.acb.org
- Principal publication: Braille Forum, monthly
- Acts as an advocate for civil rights, educational opportunities,
rehabilitation, and health-care services for persons who are blind
or have visual impairments. Has a Sight and Sound Impaired (SASI)
committee.
- American Foundation for the Blind
- 11 Penn Plaza, Suite 300
New York, NY 10001
(212) 502-7600
(800) 232-5463
(212) 502-7777 fax
afbinfo@afb.net
www.afb.org
- Principal publications: AccessWorld, 6/year, online at
www.afb.org/au/main.asp;
Journal of Visual Impairment and Blindness, monthly
- Develops and provides programs and services for persons who are blind,
visually impaired, deaf-blind, or visually impaired with multiple
disabilities in the areas of public education, social and technological
research, consultation and referrals, and governmental relations.
Maintains an archive of resource materials about and by Helen Keller.
The web site includes factsheets and other resources. Sells publications
in print, on cassette, in braille, and on videos.
- Association for Education and Rehabilitation of the Blind and
Visually Impaired (AER)
- 1703 North Beauregard Street, Suite 440
Alexandria, VA 22311-1717
(703) 671-4500
(877) 492-2708 (toll-free)
(703) 671-6391 fax
aer@aerbvi.org
www.aerbvi.org
- Principal publications: AER Report, bimonthly; Job Exchange, monthly;
RE:view, quarterly
- Has a multiple disabilities and deaf-blind division (Division 3
Provides educational opportunities for rehabilitation teachers,
orientation and mobility specialists, classroom teachers, and low vision
therapists and operates a job exchange and reference information center.
- DB-LINK: The National Information Clearinghouse on Children Who Are Deaf-Blind
- Teaching Research
Western Oregon University
345 North Monmouth Avenue
Monmouth, OR 97361
(800) 438-9376 voice
(800) 854-7013 TTY
(503) 838-8150 fax
dblink@tr.wou.edu
www.dblink.org
- Principal publication: Deaf-Blind Perspectives, 3/year
- Develops and maintains an extensive library collection of materials
related to deaf-blindness and deaf-blind resources throughout the United
States. Responds to individual requests for information including in-depth research. Produces topical publications on issues related to the
education of deaf-blind children and youth (some available in Spanish
Maintains an extensive web site containing access to the DB-LINK
publications and databases. All DB-LINK services and materials are
free of charge.
- Deafblind International (DbI)
- c/o Sense, 11-13 Clifton Terrace
Finsbury Park, London N4 3SR
United Kingdom
dbi@senseinternational.org.uk
www.deafblindinternational.org
- Principal publication: DbI review, 2/year
- Promotes services for deaf-blind people and acts as an international
network for sharing information.
- Foundation Fighting Blindness
- 11435 Cronhill Drive
Owings Mills, MD 21117-2220
(800) 683-5555 voice
(800) 683-5551 TTY
info@blindness.org
www.blindness.org
- Principal publication: Fighting Blindness News, 6/year (3 full issues and
3 Update supplements)
- Works to discover the causes, treatments, preventions, and cures for
macular degeneration, retinitis pigmentosa, Usher syndrome, and other
related retinal degenerations. Provides publications that are available
mainly in regular print, some in braille, large-print, and recorded
formats.
- Helen Keller National Center for Deaf-Blind Youths and Adults
- (HKNC)
141 Middle Neck Road
Sands Point, NY 11050-1299
(516) 944-8900 voice and TTY
(516) 944-7302 fax
hkncinfo@rcn.org
www.hknc.org
- Principal publication: Nat-Cent News, 3/year
- Provides evaluation, short-term comprehensive vocational rehabilitation
training, and assistance to youth and adults for job and residential
placements. Student training is usually funded by each state department
of rehabilitation. HKNC operates an extensive nationwide network of
field services through its ten regional offices and more than forty
affiliated programs. A listing of regional offices is at
www.hknc.org/FieldServicesREGREPADD.htm They provide
consultation and technical assistance to persons with deaf-blindness and
their families and to public and private agencies in their regions. They
locate, assist, and refer deaf-blind individuals to the most appropriate
program for services. Other services include professional training in the
field and at headquarters to new and prospective professionals who plan
to work with the deaf-blind population, services for older adults with
deaf-blindness, and a national registry of persons who are deaf-blind.
- John Tracy Clinic
- Correspondence Learning Program for Parents of Young Deaf-Blind Children
806 West Adams Boulevard
Los Angeles, CA 90007
(213) 748-5481
(800) 522-4582
(213) 747-2924 TTY
(213) 749-1651 fax
mmartindale@jtc.org
www.johntracyclinic.org
- Principal publication: John Tracy Clinic Bulletin, 2/year
- Offers a free home-study course for parents of deaf-blind children from
birth to age six.
- National Coalition on Deaf-Blindness
- 175 North Beacon Street
Watertown, MA 02472
(617) 972-7347
- A membership coalition of organizations, deaf-blind individuals, family
members, and professionals in the field of education and rehabilitation.
Advocates on the federal level for individuals who are deaf-blind.
- National Family Association for Deaf-Blind (NFADB)
- 141 Middle Neck Road
Sands Point, NY 11050
(800) 255-0411 voice and TTY
(516) 944-8900, ext. 224
(516) 883-9060 fax
nfadb@aol.com
www.nfadb.org
- Principal publication: News from Advocates for Deaf-Blind, 3/year
- A national network of families that focuses on issues related to deaf- blindness. Advocates for all persons who are deaf-blind, supports
national policy to benefit people who are deaf-blind, encourages the
founding and strengthening of family organizations in each state,
provides information and referrals, and collaborates with professionals
who work with persons who are deaf-blind. The organization has
representatives in each of its ten regional districts throughout the U.S.
- National Federation of the Blind (NFB)
- 1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
(410) 685-5653 fax
nfb@nfb.org
www.nfb.org
www.nfbnet.org/Telnet, BBS, FTP service
- Principal publications: Braille Monitor, monthly; Future Reflections,
quarterly; Voice of the Diabetic, quarterly
- Dedicated to the integration of blind persons into society. Has a deaf- blind division and houses the International Braille and Technology
Center for the Blind.
- National Library Service for the Blind and Physically Handicapped (NLS)
- Library of Congress
Washington, DC 20542
(202) 707-5100 voice
(202) 707-0744 TTY
(800) 424-8567
(202) 707-0712 fax
nls@loc.gov
www.loc.gov/nls
- Principal publications: Address List: Regional and Subregional
Libraries for the Blind and Physically Handicapped, 2/year; Facts:
Books for Blind and Physically Handicapped Individuals, annual;
Facts: Music for Blind and Physically Handicapped Individuals,
annual; News, quarterly
- Administers a national library service that provides braille and recorded
books and magazines on free loan to persons who cannot read standard
print because of visual or physical handicaps. Reading materials and
playback machines are distributed to eligible borrowers through
cooperating regional and subregional (local) libraries. A special
amplifier is available for use with the playback equipment. Eligible
borrowers must obtain a certification in writing from a physician or
licensed audiologist indicating that hearing loss has been evaluated in
the last six months and that the special amplifier is appropriate. NLS
also provides information to borrowers and the public on various
nonmedical aspects of blindness and physical handicaps.
- National Technical Assistance Consortium for Children and
Young Adults Who Are Deaf-Blind (NTAC)
- Teaching Research
Western Oregon University
345 North Monmouth Avenue
Monmouth, OR 97361
(503) 838-8808 voice
(503) 838-8821 TTY
www.tr.wou.edu/ntac
- Principal publication: Deaf-Blind Perspectives, 3/year
- A consortium that provides technical assistance to families and agencies
serving children and young adults who are deaf-blind. Combines the
resources, expertise, and experience of two major organizations: The
Helen Keller National Center and Teaching Research.
- Perkins School for the Blind
- 175 North Beacon Street
Watertown, MA 02472
(617) 924-3434
(617) 926-2027 fax
Info@Perkins.org
www.perkins.org
- Principal publication: The Lantern, 2/year
- Provides short-term diagnostic and transitional placements, evaluation
services and outreach for deaf-blind children. Has a deaf-blind program
that provides day and residential educational services for children age
three through twenty-two. Tailors instruction to the needs of each
individual student and emphasizes communication and language
development. Offers work experience and transition planning for older
students. The Hilton/Perkins program provides consultation, technical
assistance, and training for the development of programs and services
for children who are deaf-blind or blind with multiple disabilities in
order to improve the quality of life for these children worldwide.
Assistance is available to programs serving infants, toddlers, and
school-aged children in the United States and internationally. Maintains
the Samuel P. Hayes research Library, a collection of print material
about nonmedical aspects of blindness and deaf-blindness.
- State and Multi-State Projects for Children and Young Adults Who
Are Deaf-Blind
- Contact information varies by state. To obtain
information for a specific state contact:
- DB-LINK
Teaching Research
Western Oregon University
345 North Monmouth Avenue
Monmouth, OR 97361
800-438-9376
800-854-7013 TTY
dblink@tr.wou.edu
www.dblink.org
- Federally funded projects that provide assistance and training
opportunities to families, teachers, other professionals, and agencies
involved with deaf-blind children (birth to age twenty-two Most states
have a deaf-blind project. Types of services vary from state to state but
include identification of children who are deaf-blind, workshops and
other types of training events, consultations, online courses, newsletters,
opportunities for parent-to-parent contact, and family retreats.
Selected Bibliography
Factsheets
- Gense, D. Jay and Marilyn Gense. The importance of orientation and
mobility skills for students who are deaf-blind.
- DB-LINK: The
National Information Clearinghouse on Children Who Are Deaf- Blind.
www.tr.wou.edu/dblink/o&m.htm
- Miles, Barbara. Overview on deaf-blindness.
- DB-LINK: The National Information Clearinghouse on Children
Who Are Deaf-Blind.
www.tr.wou.edu/dblink/overview.htm
- Miles, Barbara. Talking the language of the hands to the hands.
- DB-LINK: The National Information Clearinghouse on Children Who
Are Deaf-Blind. www.tr.wou.edu/dblink/hands.htm
- Miles, Barbara. Literacy for persons who are deaf-blind.
- DB-LINK: the National Information Clearinghouse on Children Who Are
Deaf-Blind.
www.tr.wou.edu/dblink/literacy2.htm
- National Institute on Deafness and Other Communication Disorders.
Usher syndrome.
- www.nidcd.nih.gov/health/hearing/usher.asp
- Sense. Hearing and sight loss in older people.
- www.sense.org.uk/word_documents/fact11.cfm
Internet Links to Specific Topics
Assistive Devices and Equipment
www.deafblind.co.uk/equipment.html
www.deafblind.com/dbequipm.html
www.tr.wou.edu/dblink/tech.htm
Deaf-blindness: Definitions
www.tr.wou.edu/dblink/data/definitions.htm
www.cbss.umd.edu/resources/geninfo.html
www.azdb.net/whatsdb1.htm
www.sfsu.edu/~cadbs/eng016t.html
www.tr.wou.edu/dblink/what-is-db2.htm
www.tr.wou.edu/dblink/ovrview2.htm
www.sense.org.uk/word_documents/fact1.cfm
Discussion Lists
www.ericec.org/deafblind.html
Resource Lists
www.deafblindinfo.org/resources/
www.deafblindinfo.org/resources/intl.asp
www.dblink.org/data/index.htm
www.dblink.org/products.htm
www.nyise.org/deaf.htm
State Deaf-Blind Projects
www.tr.wou.edu/dblink/stateres.htm
www.tr.wou.edu/ntac/links.htm
Usher Syndrome
www.boystownhospital.org/parents/info/genetics/usher.asp
www.blindness.org/usher-syndrome.asp
www.nidcd.nih.gov/health/hearing/usher.asp
Pamphlets
- American Foundation for the Blind. What to do when you meet a deaf- blind person: nine helpful tips plus a poster-size one-hand manual
alphabet.
- New York, 1986. 4p. Single copies free, also sold in
packs of 25 for $50.
www.afb.org/store
- Helen Keller National Center. Guidelines for helping people who are deaf- blind.
- Free. (Information Services, Helen Keller National Center,
(516) 944-8900, ext. 326, or
hkncinfo@rcn.com
- Lighthouse International. Arlene R. Gordon Research Institute. Dual
sensory impairment among the elderly.
- New York, 2002. Single
copies free.
info@lighthouse.org
Books and Magazine Articles
- Alsop, Linda. Understanding deafblindness: issues, perspectives, and
strategies.
- Logan, UT: SKI-HI Institute, Utah State University, 2002.
(Available from Hope Publishing, Inc., 1856 North 1200 East, Logan,
UT 84321.
www.hopepubl.com
- Chen, Deborah. Essential elements in early intervention: visual impairment
and multiple disabilities.
- New York: AFB Press, 1999.
www.afb.org
- Erin, Jane N. and Susan J. Spungin. When you have a visually impaired
student with multiple disabilities in your classroom: a guide for
teachers.
- New York:AFB Press, 2004. 111p.
- Everson, Jane M. Supporting young adults who are deaf-blind in their
communities: a transition planning guide for service providers,
families, and friends.
- Baltimore: Paul Brookes, 1995. 352p.
- Huebner, Kathleen Mary, and others. Hand in hand: essentials of
communication and orientation and mobility for your students who
are deaf-blind: volumes I and II.
- New York: AFB Press, 1995.
www.afb.org
- Klein, M. Diane, Deborah Chen, and Michelle Haney. Promoting learning
through active interaction: a guide to early communication with
young children who have multiple disabilities.
- (Book and Video
Baltimore: Paul Brookes, 2000.
www.pbrookes.com
- Lieberman, Lauren, and Janet M. Macvicar. "Play and recreational habits
of youths who are deaf-blind."
- Journal of visual impairment and
blindness, v. 97, Dec. 2003: 755-768.
- Lieberman, Lauren, and Stuart Moira. "Self-determined recreational and
leisure choices of individuals with deaf-blindness."
- Journal of visual
impairment and blindness, v. 96, Oct. 2002: 724-735.
- McInnes, John M. A guide to planning and support for individuals who are
deaf-blind.
- Toronto: University of Toronto Press, 1999.
www.utppublishing.com
- McInnes, John M., and Jacquelyn A. Terffry. Deaf-blind infants and
children: a developmental guide.
- Toronto: University of Toronto
Press, 1993.
www.utppublishing.com
- Miles, Barbara, and Marianne Riggio. Remarkable conversations: a guide
to developing meaningful communication with children and young
adults who are deafblind.
- Watertown, MA: Perkins School for the
Blind, 1999.
www.perkins.org
- Sauerburger, Dona. Independence without sight or sound: suggestions for
practitioners working with deaf-blind adults.
- New York: AFB Press,
1993. 193p.
- Smith, Theresa B. Guidelines: practical tips for working and socializing
with deaf-blind people.
- Burtonsville, MD: Sign Media, Inc., 2002.
www.signmedia.com
Magazines and Newsletters
- DbI review: The magazine of deafblind international.
- 2/year. $30/year
(subscription comes with membership in Deafblind International
Deafblind International, c/o Sense, 11-13 Clifton Terrace, Finsbury
Park, London N4 3SR, UK. dbi@senseinternational.org.uk
Online at www.deafblindinternational.org/review/review.htm
- Deaf-Blind American.
- 4/year. $20/year (subscription comes with
membership in AADB American Association of the Deaf-Blind
(AADB), 814 Thayer Avenue, Suite 302, Silver Spring, MD 20910- 4500. TTY: (301) 495-4402. Voice: (301) 495-4403.
info@aadb.org. Online information at www.aadb.org/dba.htm
- Deaf-Blind perspectives.
- 3/year. Free. Variety of formats and
available online. Teaching Research, 345 North Monmouth Avenue,
Monmouth, OR 97361. dbp@wou.edu Online at
www.tr.wou.edu/tr/dbp
- Hot-Line to deaf-blind.
- A free bi-weekly braille newspaper for people
who are deaf-blind (a summary of the most current news stories
To subscribe write to the Kenneth Jernigan Library for Blind
Children, 18440 Oxnard Street, Tarzana, CA 91356.
- Nat-Cent news.
- 3/year. Free to individuals who are deaf-blind and
libraries. Others: $10/year. Helen Keller National Center for
Deaf-Blind Youth and Adults, 141 Middle Neck Road, Sands
Point, NY 11050. hkncinfo@rcn.org
- See/Hear: a quarterly newsletter for families and professionals on visual
impairments and deafblindness.
- 4/year. Free. Available in a
variety of formats and online. Texas School for the Blind and
Visually Impaired, Outreach Department, 1100 West 45th Street,
Austin, TX 78756-3494. Online at
www.tsbvi.edu/outreach/seehear/index.htm
- Talking Sense.
- 3/year. $30. Sense, 11-13 Clifton Terrace, Finsbury
Park, London N4 3SR, UK. enquiries@sense.org.uk. Online at
www.sense.org.uk/textonly/tsarticles/index.cfm
CD-ROM
- Nelson, Catherine, and Jan van Dijk. (2001 Child-guided strategies for
assessing children who are deafblind or have multiple disabilities.
AapNootMuis Educainment.
- Available from Vision Associates.
www.visionkits.com
- Through the use of more than forty video clips, this interactive
CD-ROM demonstrates strategies for determining how best to
teach children who are deaf-blind or have multiple disabilities.
DVD
- Sensory perspectives
- (2 DVDs Logan, UT: HOPE Publishing, Inc.,
2003. www.hopepubl.com $65.
- Information and instruction to help families, teachers, service
providers, and medical personnel gain an understanding of what it
means to be deaf, blind, or deaf-blind. Has simulations of different
types of vision loss, hearing loss, and combined vision and hearing
loss. Illustrates for the viewer the impact of sensory losses on an
individual's learning and interactions with the world.
Videos
- DB-LINK, The Blumberg Center, Indiana State University, and VSA
Arts of Indiana. Creative expression: opportunities for persons
who are deafblind.
- Madison, WI: Bailey Video Design, 2001. 30
minutes. Available from: Indiana Deaf-Blind Services Project,
(812) 237-2827.
- Presents ways to involve deaf-blind people in creative arts
including music, painting, pottery, weaving, and writing.
- Deaf-blindness and the intervener.
- Logan, UT: Utah State University,
1998. 15 minutes. Available from HOPE Publications, Inc.
www.hopepubl.com
- Addresses the effective use of interveners with children and youth
who are deaf-blind. Deafblindness is described, along with the
impact of combined vision and hearing loss on learning and
interaction with the world. Interveners are shown working with
individuals who are deaf-blind in home, school, and community
settings. Closed captioned.
- Deaf-Blind Service Center. Improving access
for deaf-blind people.
- Seattle, WA: Northlight Productions, 1995. 17 minutes. Available
from Deaf-Blind Service Center, Seattle, WA. Phone: (206) 323- 9178. dbsc@speakeasy.net
- Intended for hearing and sighted people who work in recreational
facilities, such as zoos and museums. Explains how to provide
service and improve access to facilities for deaf-blind consumers.
- Helen Keller National Center. Partners in success.
- Stevensville, MD:
Pilgrim Imaging, Inc. 12 minutes.
- Features three persons who are deaf-blind at different job sites.
Available from Information Services, Helen Keller National
Center. (516) 944-8900, ext. 326. www.hknc.org
- Milliken, Jane, and the Helen Keller National Center. (1985 World at
his fingertips.
- 28 minutes. (Available from Information Services,
Helen Keller National Center. (516) 944-8900, ext. 326.
www.hknc.org
- Jane Alexander narrates the story of Michael Van Orman who, as
an adult, lost first his hearing and then his sight. The video
demonstrates how someone can become independent and
productive after becoming adventitiously deaf-blind.
- Model of services for children and youth who are deafblind.
- Logan, UT:
Utah State University, 1999. 10 minutes.
- Describes a model of services that is appropriate for children and
youth who are deaf-blind and their families. Available from
HOPE Publications, Inc. www.hopepubl.com
- Mulholland, Mary Ellen and Therese Rafalowski Welch. Hand in hand:
it can be done!
- New York: AFB Press, 1994. 64 minutes.
- Concepts related to deaf-blindness are presented through the
voices of parents, teachers, and service providers of students who
are deaf-blind. Based on the development of communication and
independence, the video includes information on calendar boxes,
touch cues, object cues, sighted guides, cane use, and the
importance of play. www.afb.org
- Sacks, Oliver. The mind traveller: the ragin' cajun.
- Princeton, NJ: BBC Worldwide Americas, Inc, 1998. 50 minutes.
- Views Usher syndrome through the experiences of Danny
Delcambre, a deaf-blind restaurant owner in Seattle, Washington.
Neurologist/author Oliver Sacks explores the nature of deaf
culture, American Sign Language, and tactile signing with several
deaf-blind adults in both Louisiana and Washington State.
- Segal, Barry. Deafblind culture.
- Washington, DC: Gallaudet University
Production, 1994. 24 minutes. Available from Barry R. Segal
Enterprises. (301) 585-5198 (TTY) or
BRSCITYMAN20@aol.com
- Presented and narrated by Barry Segal, an individual who is deaf- blind. Covers five topics related to deaf-blind culture, including
types and causes of deaf-blindness, communication methods,
assistive devices, recreational activities, and employment. Audio
captioning and sound is available in addition to Segal signing.
- Ulrich, Nancy. Mind over matter: coping with disability.
- Sands Point,
NY: Helen Keller National Center. 28 minutes.
- Roberta Fanicelli interviews Winnie Tunnison about what it is like
to be a deaf adult who then loses her sight. Open captioned.
Available from the Information Services, Helen Keller National
Center. (516) 944-8900, Ext. 326. www.hknc.org
- West Australian Deafblind Association. Assume nothing: deafblindness—an
introduction.
- Perth, Australia: All Round Vision, 1999. 22
minutes. Available from Senses Foundation, Inc., Sixth Avenue
and Whatley Crescent, PO Box 14, Maylands, Western Australia
6931. Phone: (61) 08 9272 1122. Fax: (61) 08 9272 6600,
www.senses.asn.au/
- Demonstrates and describes methods and techniques for
communicating and interacting with people who are deaf-blind.
Introduces six people who are deaf-blind ranging from the very
young to adults. Presents issues in their daily lives including use of
touch cues and signs, technology, tactile interpreting, and career
choices. Open captioned.
Posted on 2006-05-30