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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.

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