Deafblindness - National Library Service for the Blind and Print Disabled (NLS)

Deafblindness refers to the combination of hearing and visual loss that severely impedes communication, education, employment, and independent living. While some individuals are totally deaf and blind, most deafblind people have different degrees of hearing and vision loss. The hearing and vision loss of individuals with Usher syndrome or of advanced age may worsen over time. Infants born with CHARGE syndrome syndrome or whose mothers contracted rubella or the Zika virus while pregnant can be deafblind from birth. The National Consortium on Deafblindness estimated in 2008 that there are approximately 10,000 children (ages birth to 22 years) and approximately 40,000 adults who are deafblind in the United States. This census of the Deafblind in the United States did not count the many senior adults with severe combined hearing and vision loss.

This Deafblindness Resource Guide is for individuals who are deafblind, as well as for their parents and professionals who work with them. This guide is organized into four parts. Part One highlights information resources on a number of topics related to deafblindness. Part Two is a bibliography that touches on the topics found in the resources section. Part Three is a bibliography of books about deafblindness in the NLS collection. Part Four lists the contact information of the organizations listed in this guide.

Part One: Resources

Congenital Causes of Deafblindness

CHARGE Syndrome

CHARGE Syndrome
Cincinnati Children’s Hospital Medical Center
https://www.cincinnatichildrens.org/health/c/charge-syndrome

A web article containing information about causes of CHARGE Syndrome, symptoms, diagnosis, and treatment.

CHARGE Syndrome
National Center on Deaf-Blindness
https://nationaldb.org/library/list/86

Allows users to search for articles, webinars, audio/video presentations, and websites on CHARGE syndrome by date range. Presents articles, bibliographies, personal stories, and visual issues resulting from CHARGE syndrome.

CHARGE Syndrome
National Library of Medicine
https://ghr.nlm.nih.gov/condition/charge-syndrome

Factsheet on CHARGE syndrome from the National Library of Medicine. Topics include genetics and inheritance patterns, diagnosis and management, and additional information and resources.

CHARGE Syndrome
National Organization for Rare Disorders
http://rarediseases.org/rare-diseases/charge-syndrome

Presents a factsheet with signs and symptoms, causes, affected populations, therapies, and additional resources.

CHARGE Syndrome: An Overview
Perkins School for the Blind (eLearning)
www.perkinselearning.org/videos/webcast/charge-syndrome-overview

Video with transcripts about the features, characteristics, medical complications, development, and learning with CHARGE syndrome. Presented by Pamela Ryan school psychologist at the Perkins School for the Blind.

CHARGE Syndrome: An Overview
The Charge Syndrome Foundation
www.chargesyndrome.org/about-charge/overview/

Factsheet and FAQ on CHARGE syndrome from The CHARGE Syndrome Foundation.

Congenital Rubella Syndrome

Congenital Rubella
Medline Plus
https://medlineplus.gov/ency/article/001658.htm

Discussion of congenital rubella, its causes, symptoms, treatments, and possible complications.

Congenital Rubella
National Institutes of Health (NIH), Genetic and Rare Diseases Information Center (GARD)
https://rarediseases.info.nih.gov/diseases/4744/congenital-rubella

Provides a summary of the disease, along with associated symptoms and related diseases, and additional resources on the topic.

Congenital Rubella Syndrome (CRS)
European Centre for Disease Prevention and Control
https://ecdc.europa.eu/en/congenital-rubella-syndrome

Provides a factsheet about congenital rubella syndrome (CRS), as well as surveillance and disease data and information on prevention and control.

Congenital Rubella Syndrome (CRS)
National Center on Deaf-Blindness
https://www.cdc.gov/surv-manual/php/table-of-contents/chapter-15-congenital-rubella-syndrome.html

Manual for the Surveillance of Vaccine-Preventable Diseases, “Chapter 15: Congenital Rubella Syndrome.” Research and practical articles on congenital rubella syndrome (CRS). Reports cover health challenges, late emerging manifestations of congenital rubella, progress toward eliminating rubella in the Western Hemisphere, and a bibliography.

Pregnancy and Rubella
Centers for Disease Control and Prevention
www.cdc.gov/rubella/pregnancy.html

Discussion of congenital rubella syndrome that can cause multiple disabilities, including deafness and vision impairment, in infants whose mothers contracted rubella in the first trimester.

Rubella, Congenital
National Organization for Rare Disorders (NORD)
https://rarediseases.org/rare-diseases/rubella-congenital/

General information about the disease, along with signs and symptoms, causes, and information on standard and investigational therapies.

Rubella Fact Sheet
World Health Organization
https://www.who.int/en/news-room/fact-sheets/detail/rubella

Key facts and symptoms of congenital rubella syndrome, as well as the World Health Organization’s plan to eliminate rubella.

Cytomegalovirus (CMV)

Cytomegalovirus (CMV) and Congenital CMV Infection
Centers for Disease Control and Prevention
https://www.cdc.gov/cmv/index.html

Contains general information about cytomegalovirus, information for pregnant women and parents, and information specifically about CMV and hearing loss.

Cytomegalovirus Infections
Medline Plus
https://medlineplus.gov/cytomegalovirusinfections.html

Discusses cytomegalovirus and its causes, symptoms, treatments, and possible complications.

General Information on Etiologies Related to Deaf-Blindness

Causes of Deaf-Blindness
National Center on Deaf-Blindness

https://nationaldb.org/library/list/6

Lists etiologies (causes) and frequency of both congenital and later-onset deaf-blindness, and also provides a list of related etiologies that may cause both vision and hearing impairment.

Hydrocephalus

Hydrocephalus
Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604

Provides an overview of hydrocephalus, its symptoms, causes, risk factors, and complications.

Microcephaly

Facts about Microcephaly
Centers for Disease Control and Prevention
www.cdc.gov/ncbddd/birthdefects/microcephaly.html

Facts about microcephaly, including disabilities related to the condition.

Microcephaly Fact Sheet
World Health Organization
www.who.int/mediacentre/factsheets/microcephaly/en/

Introduces key facts about microcephaly. Links to information on the Zika virus and Gullain-Barré syndrome.

NINDS Microcephaly Information Page
National Institute of Neurological Disorders and Stroke (NINDS)
https://www.ninds.nih.gov/current-research/focus-disorders

An introduction to the causes, treatments, prognoses, and research into microcephaly. Also in digital audio.

Zika and Pregnancy
Center for Disease Control and Prevention
www.cdc.gov/zika/pregnancy/index.html

Features up-to-date research, travel warnings, methods of prevention, and other information on the Zika virus and pregnancy.

Toxoplasmosis

Conditions and Syndromes That Can Result in Deafblindness: Toxoplasmosis
Deafblind International (DbI)
www.deafblind.com/toxoplas.html

Introduction to toxoplasmosis and its effects on infants worldwide.

Toxoplasmosis
Deaf Blind UK
www.deafblinduk.org.uk/toxoplasmosis.html

Summary includes transmission, symptoms, and treatment of infants affected by toxoplasmosis.

Usher's Syndrome

Understanding Usher Syndrome
American Speech-Language-Hearing Association
https://www.asha.org/Articles/Understanding-Usher-Syndrome/

In-depth article on the genetic condition Usher syndrome.

Usher Syndrome
National Institute of Health
United States National Library of Medicine
Genetics Home Reference
https://ghr.nlm.nih.gov/condition/usher-syndrome

Summarizes the major types of the rare genetic disease Usher syndrome, including progressive hearing and sight impairment. Focuses on the genetic aspects of Usher syndrome, including inheritance pattern, frequency, and genetic changes.

Usher Syndrome
National Institute on Deafness and other Communication Disorders (NIDCD)
www.nidcd.nih.gov/health/usher-syndrome

An introduction to Usher syndrome, a rare condition that can cause both visual and hearing impairment.

What is Usher Syndrome?
Foundation Fighting Blindness
www.blindness.org/usher-syndrome

Focuses on Usher syndrome and visual impairment, genetic counselors in family planning, and identified treatments. Extensive bibliography and an appendix on intervention strategies including sign communication and assistive technology.

DeafBlind Arts

Creative Arts
Helen Keller National Center for DeafBlind Youths and Adults
www.helenkeller.org/hknc/creative-arts

Creative arts courses for students at the Helen Keller National Center for DeafBlind Youths and Adults includes adaptive techniques and using tools.

Creative Expression
National Center on DeafBlindness
http://documents.nationaldb.org/products/creativity-bk.pdf [PDF: 1.2 MB / 43p.]

Describes different artistic and creative opportunities for Deafblind students.

Sense Arts
Sense for DeafBlind People
https://www.sense.org.uk/get-support/arts-sport-and-wellbeing/sense-arts/

Exploration of drama, music, film, visual, and tactile art by Deafblind artists.

Theater
Nalaga’at Center
https://nalagaat.org.il/en/

Internationally touring Deafblind theater troupe.

Touch, Explore, Create
Perkins School for the Blind
https://www.perkins.org/stories/touch-explore-create

Describes the experiences of art teachers at the Perkins School for the Blind and the techniques they use to teach art to Deafblind students.

DeafBlind Assistive Technology

Assistive Technology
FAVI Deaf-Blind Collaborative
http://deafblind.ufl.edu/topics/assistive-technology/

Information for using assistive technology to promote literacy and learning for Deaf-blind children and adults.

Deaf-Blind Tech Gadgets in Educational Settings
National Center on Deaf-Blindness
http://documents.nationaldb.org/products/dviqanindya.pdf [PDF: 369KB / 4p.]

A list of assistive technology for deaf-blind learners.

Deaf-Blind Communication

Augmentative and Alternative Communication
American Speech-Language Hearing Association
www.asha.org/NJC/AAC/

Introduction to aided and unaided communication forms.

Colorado Services to Children with Deafblindness
www.cde.state.co.us/sites/default/files/documents/cdesped/download/pdf/dbhandskills.pdf [PDF: 66 KB / 6p.]

Factsheet on the hand-over-hand forms of communication.

Communication for Children with Deafblindness, or Visual and Multiple Impairments
Texas School for the Blind and Visually Impaired
www.tsbvi.edu/distance/communication/

Website by and for parents and other individuals who work with deaf-blind children.

Communication Matrix
https://communicationmatrix.org/

The Communication Matrix is a free tool that assesses the communication status, progress, and needs of individuals using forms of communication other than writing and speaking. Website includes research and a community message board for teachers, practitioners, and parents.

DeafBlind
National Consortium of Interpreter Education Centers (NCIEC)
www.interpretereducation.org/specialization/deafblind/

Information on the consortium’s work on deaf-blind interpreting, regional activities, and partnerships with Gallaudet University and Northeastern University.

Deafblind Interpreting
World Association of Sign Language Interpreters
http://wasli.org/special-interest/deafblind-interpreting

WASLI Deafblind Interpreting Committee addresses the lack of educational and training opportunities for interpreters who wish to work with people who are deaf-blind. Joint statement by WASLI and the World Federation of the Deafblind on promoting deaf-blind communication, literacy, and education worldwide. Free PDF copy of 103 Haptic Signals for the English Language reference guide.

Learning & Instruction: Tactile Strategies
National Center on Deaf-Blindness
https://nationaldb.org/library/list/47

Introduction to tactile strategies for deaf-blind communication.

Social Haptics
Deafblind Information: Senses Australia
www.deafblindinformation.org.au/about-deafblindness/deafblind-communication/social-haptics/

Information about social haptics and communication relayed by touch.

Tactile Strategies Information Sheets
Successful Adaptions for Learning to Use Touch Effectively (SALUTE)
www.projectsalute.net/Learned/Learnedhtml/Learnedmain.html#Articles

Tactile information sheets include information on object cues, communication signals, early literacy, coactive signing, signing on the body, tactile signing, tactile communication strategies, family stories, and professional perspectives on children and adults who are deaf-blind.

Tips for Interpreters Working with Deaf-Blind Consumers
American Association of the Deaf-Blind
www.aadb.org/information/interpreting/tip_for_interpreters.html

Tips for sign language interpreters who work with deaf-blind consumers.

Using Tactile Sign Language to Read with a Child who is Deafblind
Paths to Literacy
www.pathstoliteracy.org/blog/using-tactile-sign-language-read-child-who-deafblind

Reading books to young children with Tactile American Sign Language (ASL). Pre-literacy introduction to non-contracted braille.

Deaf-Blind Education

All Children Can Read
National Consortium on Deaf-Blindness (NCDB)
http://literacy.nationaldb.org/

Steps to literacy and literacy skills checklist for pre-literate deaf-blind children.

Deaf-Blindness
Project IDEAL
www.projectidealonline.org/v/deaf-blindness/

Information on the causes, impact on learning, teaching strategies, assistive technology, and organizations for deaf-blindness.

Deaf-blindness
Special Education Guide
www.specialeducationguide.com/disability-profiles/deaf-blindness/

Article on meeting the educational challenges of deaf-blind children.

History of Deaf-Blind Education
National Center on Deaf-Blindness
https://nationaldb.org/library/list/42

Provides the history of education of deaf-blind children and adults, as well as a broader view of learning and instruction that includes articles on daily living skills, concept development, and literacy.

Interveners and Children who Are Deaf-Blind
Office of Special Education and Rehabilitative Services (OSERS)
http://sites.ed.gov/osers/2015/12/interveners-and-children-who-are-deaf-blind/

Intervention in deaf-blind education on the federal, state, and local levels.

Ohio Center for Deafblind Education
School Age
https://www.ohiodeafblind.com/

Parent resources on K-12 and post-secondary education for students who are deaf-blind. Hearing and vision decision tree and checklist for early intervention providers.

Oregon Deafblind Project
Making Connections
www.oregondb.org/OverviewMAPS.html

Guide to partnerships between parents and teachers of deaf-blind children.

Project SALUTE (Successful Adaptions for Learning to Use Touch Effectively)
Emergent Literacy for Children Who Are Deaf-Blind
http://projectsalute.net/Learned/Learnedhtml/EmergentLit.html

Information on creating tactile representations of real-life experiences for deaf-blind children to access, with examples and considerations.

Schools for the Blind in the United States
Texas School for the Blind and Visually Impaired
www.tsbvi.edu/instructional-resources/2785-schools-for-the-blind-in-the-united-states

A list of primary and secondary schools for blind students in the United States.

Deaf-Blind Post Secondary Education and Employment

Career Possibilities
Helen Keller National Center for Deaf-Blind Youths and Adults
www.helenkeller.org/hknc/career-possibilities-0

Sample of companies that are friendly to deaf-blind adults.

College Students Who Are Deaf-Blind
National Center on Deaf-Blindness
https://nationaldb.org/library/page/1941

Text of a 2011 study on college students who are deaf-blind, with support suggestions.

Customized Employment
National Center on Deaf-Blindness
https://nationaldb.org/library/list/63

Information on customized employment for deaf-blind young adults.

Deaf and Blind Students
Campus Explorer
www.campusexplorer.com/college-advice-tips/A93901EC/Deaf-and-Blind-Students/

Tips for deaf-blind students in high school who wish to pursue secondary education.

Employment
National Center on Deaf-Blindness
https://nationaldb.org/library/list/64

Employment resources for deaf-blind young adults.

National Federation of the Blind (NFB) Scholarship Program
National Federation of the Blind
https://nfb.org/scholarships

Includes the application and requirements for the NFB scholarship. Links to Braille Monitor articles on past winners and further resources for college scholarships and financial aid for post-secondary students with disabilities.

Scholarships
Sertoma
http://sertoma.org/what-we-do/scholarships/

Information and application for Sertoma’s Scholarship for the Hard of Hearing or Deaf.

Services for Congenitally Deafblind Adults
Deafblind International
https://www.deafblindinternational.org/resources/service-guidelines/

Standards for working with deaf-blind adults.

Top Universities for Deaf, Hard-of-Hearing Students
Healthy Hearing
www.healthyhearing.com/report/52187-Top-universities-for-deaf-hard-of-hearing-students

Information on the top universities for deaf or hard-of-hearing students. Features short articles on Gallaudet University, the National Technical Institute for the Deaf, and Southwest Collegiate Institute for the Deaf. Includes a section on international studies.

Trends and Unresolved Issues Impacting Individuals who are Deaf-Blind
American Association of the Deaf-Blind
http://aadb.org/information/ncd/ncd_introduction.html#employment

Unresolved issues impacting deaf-blind adults. Includes information on assistive technology, independent living, and employment.

TRIO Program
Office of Postsecondary Education
www2.ed.gov/about/offices/list/ope/trio/index.html

Federal program provides services to students with disabilities pursuing post-secondary education.

Youth Programs Overview
Helen Keller National Center for Deaf-Blind Youths and Adults
www.helenkeller.org/hknc/youth-programs

For deaf-blind youths ages 16 to 23. College and career preparation and transition services.

Dual Sensory Loss (DSL)

Aging Changes in the Senses
National Library of Medicine
www.nlm.nih.gov/medlineplus/ency/article/004013.htm

An overview of aging changes in sight and hearing.

Confident Living Program for Senior Citizens
Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
www.helenkeller.org/hknc/confident-living-program-senior-citizens

Life skills training program for older adults with combined sight and hearing loss.

Older People
Sense
https://www.sense.org.uk/olderpeople

Introduction to dual sensory loss in older adults.

Overview of Hearing and Vision Loss
VisionAware
www.visionaware.org/info/for-seniors/health-and-aging/vision-loss-and-the-challenges-of-aging/hearing-and-vision-loss/overview-of-hearing-and-vision-loss/12345

Overview of combined hearing and vision loss in older adults.

General Resources

Deafblind Information
Senses Australia
www.deafblindinformation.org.au/

Information about deaf-blindness, congenital deaf-blindness, and acquired deaf-blindness.

Deafblind International (DbI)
www.deafblindinternational.org

Promotes awareness of deaf-blindness throughout the world and supports educators, families, and medical specialists.

Deaf-Blindness
California Deaf-blind Services
www.cadbs.org/news/a16-deaf-blindness/

Definitions of deaf-blindness. Includes a discussion on the federal government’s definition of deaf-blindness.

Definitions of Deaf-Blindness
National Center on Deaf-Blindness
https://nationaldb.org/library/list/8

Definitions of deaf-blindness, including information from the perspectives of the federal department of education, specific states, an international group and the federal adult rehabilitation program.

Educational videos for parents, teachers, and other professionals who work with deaf-blind children.

Washington Sensory Disabilities Services
https://www.wsdsonline.org

Contains videos, training information, and other resources for teachers, parents, and guardians of deaf-blind individuals.

What is Deaf-Blindness
National Center on Deaf-Blindness
https://nationaldb.org/library/list/3

Overview of Deaf-Blindness. Includes Spanish-language resources.

Part Two: Selective Bibliography

Ahuja, Satpal, ed. Usher Syndrome: Pathogenesis, Diagnosis, and Therapy. New York: Nova Science Publishers, 2001.

Aitken, Stuart, Mariana Buultjens, Catherine Clark, Jane T. Eyre, and Laura Pease, eds. Teaching Children Who Are Deafblind: Contact Communication and Learning. Hoboken, NJ: Taylor and Francis, 2013.

Blake, Kim D., Nancy Salem-Hartshore, Marie Abi Daoud, and Janneke Gradstein. “Adolescent and Adult Issues in CHARGE Syndrome.” Clinical Pediatrics 44, no. 2 (2005): 151–159.

Brennan, Mark, Amy Horowitz, and Ya-Ping Su. “Dual Sensory Loss and Its Impact on Everyday Competence.” The Gerontologist 45, no. 3 (2005): 337–346.

Busacco Debra. “Rehabilitation Strategies for Older Adults with Dual Sensory Loss.” Hearing Review 18, no. 8 (2011): 40–42.

Caban, Alberto J., David J. Lee, Orlando Gomez-Martin, Byron L. Lam, and D. Diane Zheng. “Prevalence of Concurrent Hearing and Visual Impairment in U.S. Adults: The National Health Interview Survey, 1997–2002.” American Journal of Public Health 95, no. 11 (2005): 1940–1942.

Capella-McDonnall, Michele E. “The Effects of Single and Dual Sensory Loss on Symptoms of Depression in the Elderly.” International Journal of Geriatric Psychiatry 20, no. 9 (2005): 855–861.

Chomsky, Noam. “Analytic Study of the Tadoma Method: Language Abilities of Three Deaf-Blind Subjects.” In Noam Chomsky: Critical Assessments, edited by Carlos Otero, 548–81. New York, NY: Routledge (1994).

Crews, John E., and Vincent A. Campbell. “Vision Impairment and Hearing Loss among Community-Dwelling Older Americans: Implications for Health and Functioning.” American Journal of Public Health 94, no. 5 (2004), 823–829.

Dalby, Dawn M., John P. Hirdes, Paul Stolee, J. Graham Strong, Jeff Poss, Erin Y. Tjam, Lindsay Bowman, and Melody Ashworth. “Characteristics of Individuals with Congenital and Acquired Deaf-blindness.” Journal of Visual Impairment & Blindness 103, no. 2 (2009): 93–102.

Dalby, Dawn M., John P. Hirdes, Paul Stolee, J. Graham Strong, Jeff Poss, Erin Y. Tjam, Lindsay Bowman, and Melody Ashworth. “Development and Psychometric Properties of a Standardized Assessment for Adults Who Are Deaf-Blind.” Journal of Visual Impairment & Blindness 103, no. 1 (2009): 7–16.

Fletcher, Paula C., and Dawn M. Guthrie. “The Lived Experiences of Individuals with Acquired Deafblindness: Challenges and the Future.” International Journal of Disability, Community & Rehabilitation 12, no. 1 (2013).

Hartshorne, Timothy S., Margaret A. Hefner, Sandra L.H. Davenport, and James W. Thelin. CHARGE Syndrome. San Diego, CA: Plural Publishing, 2011.

Heine, Chryssie, and Colette Browning. “Communication and Psychosocial Consequences of Sensory Loss in Older Adults: Overview and Rehabilitation Directions.” Disability and Rehabilitation, 24, no. 15 (2002): 763–773.

Heine, Chryssie, and Colette Browning. “The Communication and Psychosocial Perceptions of Older Adults with Sensory Loss: A Qualitative Study.” Aging & Society 24, no. 1 (2004): 113–130.

Heine, Chryssie, and Colette Browning. “Dual Sensory Loss in Older Adults: A Systematic Review.” The Gerontologist 55, no. 5 (2015): 913–928.

Heydt, Kathy, Monica Allon, Susan Edwards, Mary Jane Clark, and Charlotte Cushman. Perkins Activity and Resource Guide–A Handbook for Teachers of Students with Visual and Multiple Disabilities. Watertown, MA: Perkins School for the Blind, 2004.

Horsch, Ursula, and Andrea Schelle, eds. Compendium on CHARGE Syndrome. Heidelberg, Germany: University of Heidelberg, 2011.

Huebner, Kathleen M., Jeanne G. Prickett, Therese R. Welch, and Elga Joffee. Hand in Hand: Selective Reprints and Annotated Bibliography on Working with Students Who Are Deaf-Blind. New York, NY: American Foundation for the Blind, 1995.

Kimberling, William J., and Claes Moller. “Genetic Hearing Loss Associated with Eye Disorders.” In Hereditary Hearing Loss and its Syndromes, 3rd ed., edited by Helga V. Toriello and Shelley D. Smith, 210–266. New York, NY: Oxford University Press, 2013.

Lewin-Leigh, Benedict. Standards for Services for Adults Who are Deafblind or Have a Dual Sensory Impairment. London, England: Sense, 2007.

Loprinzi, Paul D., Ellen Smit, and Gina Pariser. “Association among Depression, Physical Functioning, and Hearing and Vision Impairment in Adults with Diabetes.” Diabetes Spectrum 26, no. 1 (2013): 6–15.

McDonnall, Michele C. “The Effect of Productive Activities on Depressive Symptoms among Older Adults with Dual Sensory Loss.” Research on Aging 33, no. 3 (2011): 234–255.

McInnes, John M., ed. A Guide to Planning and Support of Individuals Who Are Deafblind. Toronto, Canada: University of Toronto Press (1999).

McLinden, Mike, and Stephen McCall. Learning through Touch. Supporting Children with Visual Impairment and Additional Difficulties. London, England: David Fulton Publishers, 2002.

Miles, Barbara. “Literacy for Persons Who Are Deaf-Blind.” DB-LINK Fact Sheet (2000). Retrieved from https://files.eric.ed.gov/fulltext/ED442215.pdf [PDF: 251 KB / 13p.]

Miles, Barbara. “Talking the Language of the Hands to the Hands. The Importance of Hands for the Person Who Is Deafblind.” DB-LINK Fact Sheet (1997). Retrieved from https://files.eric.ed.gov/fulltext/ED419331.pdf [PDF: 264 KB / 15p.]

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.

Miller, Tom, and Julie Bernais-Pierce. Monograph No. 1–Natural Environments: Service and Advocacy for Children Who Are Visually Impaired or Deafblind. Watertown, MA: Perkins School for the Blind, 2009.

Nordstrom, Brian H. “History of the Education of the Blind and Deaf.” United States Department of Education (1986). Retrieved from http://files.eric.ed.gov/fulltext/ED309614.pdf [PDF: 318 KB / 24p.]

O’Connell, Cynthia. Beyond Pegboards: A Guide for Teaching Adolescent Students with Multiple Disabilities. Watertown, MA: Perkins School for the Blind, 2007.

Orzech, Dan. “Betrayed by Our Bodies—Sensory Loss in Aging.” Social Work Today January/February 2007. Retrieved from www.socialworktoday.com/archive/janfeb2007p20.shtml

Redbroe, Inger, and Marleen Janssen. Communication and Congenital Deafblindness Series. Watertown, MA: Perkins School for the Blind, 2006.

Riggo, Marianne, and Barbara McLetchie, eds. Deafblindness: Educational Service Guidelines. Watertown, MA: Perkins School for the Blind, 2008.

Riggo, Marianne, and Barbara McLetchie. Competencies for Teachers of Learners who are Deafblind. Watertown, MA: Perkins School for the Blind, 1997.

Ronnberg, Jerker, and Erik Borg, E. “A Review and Evaluation of Research on the Deafblind from Perceptual, Communicative, Social and Rehabilitative Perspectives.” Scandinavian Audiology 30, no. 1 (2001): 67–77.

Schneider, Julie. Becoming Deaf-Blind: Negotiating a Place in a Hostile World. PhD. diss., University of Sydney, Sydney, Australia, 2006.

Shiprintzen, Robert J. Syndrome Identification for Speech-Language Pathologists. San Diego, CA: Singular Publishing Group, 1999.

Smithdas, Robert J. “Reflections of a Deafblind Adult.” American Annals of the Deaf 125, no. 8 (1980): 1015–1017.

Tabak, John. “The Deafblind and American Sign Language.” In Significant Gestures: A History of American Sign Language (annotated edition). Santa Barbara, CA: Praeger, 2006.

Turnbull, Ann, Rud Turnbull, Michael L. Wehmeyer, and Karrie A. Shogren. Exceptional Lives: Special Education in Today's Schools, 7th ed. Upper Saddle River, NJ: Pearson Merrill Prentice Hall, 2012.

Part Three: Bibliography of NLS Books on Deaf-Blindness

Chambers, Diane P. Words in My Hands: A Teacher, a Deaf-Blind Man, an Unforgettable Journey (DB72036)
Download DB72036

Crist, Lyle M. Through The Rain and Rainbow: The Remarkable Life of Richard Kinney (BR03495)
Download BR03495

Dash, Joan. The World at Her Fingertips: The Story of Helen Keller (BR13552, DB52383)
Download DB52383
Download DB52383

DeWitt, Charlotte J., ed. Walk in My Shoes: An Anthology on Usher Syndrome (BR21946, DB86887)
Download BR21946
Download DB86887

Freeberg, Ernest. The Education of Laura Bridgman: First Deaf and Blind Person to Learn Language (BR13354, DB51875)
Download BR13354
Download DB51875

Gitter, Elisabeth. The Imprisoned Guest: Samuel Howe and Laura Bridgman, the Original Deaf-Blind Girl (BR13353, DB51840)
Download BR13353
Download DB51840

Herrmann, Dorothy. Helen Keller: A Life. (DB48038)
Download DB48038

Hunter, Edith F. Child of the Silent Night (BR13357, DB25699)
Download BR13357
Download DB25699

Institute on Rehabilitation Issues. Strategies for Serving Deaf-Blind Clients (BR07027)
Download BR07027

Keller, Helen. Selected Writings (BR16226, DB61696)
Download BR16226
Download DB61696

Keller, Helen. The Story of My Life (DB55883)
Download DB55883

Keller, Helen. Teacher, Anne Sullivan Macy: A Tribute by the Foster-Child of Her Mind. (DB11326)
Download DB11326

Kinney, Richard. Independent Living without Sight and Hearing (BR14822)
Download BR14822

Lash, Joseph P. Helen and Teacher: The Story of Helen Keller and Anne Sullivan Macy (DB57818)
Download DB57818

Lawlor, Laurie. Helen Keller: Rebellious Spirit (BR14162)
Download BR14162

Mactavish, Joan. Bravo! Miss Brown: A World without Sight and Sound (BR13551, DB52603)
Download BR13551
Download DB52603

McInnes, J. M. Deaf-Blind Infants and Children: A Developmental Guide (BR15140)
Download BR15140

Nicholson, Lois. Helen Keller: Humanitarian (DB46249)
Download DB46249

Nielsen, Kim E. Beyond “The Miracle Worker”: The Remarkable Life of Anne Sullivan Macy and Her Extraordinary Friendship with Helen Keller (BR18459, DB69091)
Download BR18459
Download DB69091

Nielsen, Kim. E. The Radical Lives of Helen Keller (DB57987)
Download DB57987

Silver, Ruth. Invisible: My Journey through Vision and Hearing Loss (BRC01729, DBC04170)
Download BRC01729
Download DBC04170

Smithdas, Robert J. Life at My Fingertips (DB26059)
Download DB26059

Stoffel, Scott M., ed. Deaf-Blind Reality: Living the Life (BR20660)
Download BR20660

Thompson, Ken D. Beyond the Double Night (BR10679, DB43139)
Download BR10679
Download DB43139

Yoken, Carol. Living with Deaf-Blindness: Nine Profiles (BR04324, DB16065)
Download BR04324
Download DB16065

For Children:

Barry, Holly. Helen Keller’s Best Friend Belle (DBC00707), for grades 2-4
Download DBC00707

Ford, Carin T. Helen Keller: Lighting the Way for the Blind and Deaf (DB53574), for grades 6-9
Download DB53574

Kudlinski, Kathleen V. Helen Keller: A Light for the Blind (DB34676), for grades 3-6
Download DB34676

Rappaport, Doreen. Helen’s Big World: The Life of Helen Keller (DBC01406), for grades K-3
Download DBC01406

Shichtman, Sandra H. Helen Keller: Out of a Dark and Silent World (DB59217), for grades 2-4
Download DB59217

Part Four: Organizations

Alexander Graham Bell Association for the Deaf and Hard of Hearing
3417 Volta Pl. NW
Washington, DC 20007
(202) 337-5220
(202) 337-5221 TTY
(202) 337-8314 fax
[email protected]
www.agbell.org

American Academy of Audiology
11480 Commerce Park Dr., Ste. 220
Reston, VA 20191
(703) 790-8466
800-222-2336 toll-free
(703) 790-8631 fax
[email protected]
www.audiology.org

American Association of the Deaf-Blind
248 Rainbow Dr., #14864
Livingston, TX 7739-2048
[email protected]
http://www.aadb.org/

American Foundation for the Blind
1401 S. Clark St., Ste. 730
Arlington, VA 22202
(212) 502-7600
800-232-5463 toll-free
[email protected]
www.afb.org

American Speech-Language Hearing Association (ASHA)
ASHA National Office
2200 Research Blvd.
Rockville, MD 20850-3289
(301) 296-5700
800-498-2071 toll-free
(301) 296-5650 TTY
http://www.asha.org/

The Arc
1825 K St., NW, Ste. 1200
Washington, DC 20006
(202) 534-3700
800-433-5255 toll-free
(202) 534-3731 fax
www.thearc.org

Association for Education and Rehabilitation of the Blind and Visually Impaired
1703 N. Beauregard St., Ste. 440
Alexandria, VA 22311
(703) 671-4500
(703) 671-6369 fax
[email protected]
https://aerbvi.org

A–Z to Deafblindness
[email protected]
www.deafblind.com

Birth Defect Research for Children, Inc.
976 Lake Baldwin Ln.
Orlando, FL 32814
(407) 895-0802
[email protected]
www.birthdefects.org

California Deaf-Blind Services
San Francisco State University
Department of Special Education
1600 Holloway Ave.
San Francisco, CA 94132-4158
(415) 405-7560 Voice/TTY
(415) 338-2845 Fax
www.cadbs.org/

California State University Northridge (CSUN)
Deaf Studies Department
Education 1107
18111 Nordhoff St.
Northridge, CA 91330-8265
(818) 677-5116
(818) 677-5717 fax
https://www.csun.edu/eisner-education/deaf-studies

Campus Explorer
12555 W. Jefferson Blvd., Ste. 202
Los Angeles, CA 90066
www.campusexplorer.com

Center for Deaf-Blind Persons
8306 W. Lincoln Ave.
West Allis, WI 53219
(414) 481-7477 voice/TTY
844-638-5800 toll-free
(414) 481-7481 fax
www.deaf-blind.org

Center for Disability and Development
Dept. of Educational Psychology
4225 Texas A&M University
College Station, TX 77843-4225
(979) 845-4612
(979) 862-1256
[email protected]
cdd.tamu.edu

Centers for Disease Control and Prevention (CDC)
1600 Clifton Rd.
Atlanta, GA 30329-4027
800-232-4636 toll-free
888-232-6348 TTY
www.cdc.gov/

CHARGE Syndrome Foundation, Inc.
318 Half Day Rd, #305
Buffalo Grove, IL 60089
(516) 684-4720
800-442-7604 toll-free
888-317-4735 fax
[email protected]
www.chargesyndrome.org

Colorado Services to Children and Youth with Combined Vision and Hearing Loss Project
Colorado Department of Education
Office of Special Education
1560 Broadway, Ste. 1100
Denver, CO 80202
(303) 666-6767
(303) 860-7060 TTY
(303) 866-3808
[email protected]
www.cde.state.co.us/cdesped/sd-db_projectinfo

Communication Matrix Community
[email protected]
https://communicationmatrix.org/community

Deaf-Blind Division of the National Federation of the Blind
www.nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org (mailing list)

Deafblind Information by Senses Australia
PO Box 143
Burswood WA 6100
Australia
+61 8 9473 5479
+61 8 9473 5499 fax
[email protected]
www.deafblindinformation.org.au

Deafblind International (DbI)
616 Riversdale Rd.
Camberwell, Victoria
Australia 3124
+61 8 9046 0555
+64 8 9882 9210 fax
[email protected]
www.deafblindinternational.org

Deaf Blind UK
www.deafblinduk.org.uk/

FAVI (Florida and the Virgin Islands) Deaf-Blind Collaborative
University of Florida Outreach Project
PO Box 1000234
Gainesville, FL 32610
(352) 273-7530
800-667-4052 toll-free
(352) 273-8539 fax
http://deafblind.ufl.edu

Foundation for Fighting Blindness
7168 Columbia Gateway Dr., Ste. 100
Columbia, MD 21046
(410) 423-0600
(410) 363-7139 TDD
800-683-5555 toll-free
800-683-5551 toll-free TDD
[email protected]
https://www.fightingblindness.org

Georgia Sensory Assistance Project
College of Education
University of Georgia
570 Aderhold Hall
Athens, Georgia 30602-7152
[email protected]
http://gsap.coe.uga.edu

Healthy Hearing
PO Box 515381, #42919
Los Angeles, CA 90051-6681
800-567-1692 toll-free
www.healthyhearing.com/

Helen Keller National Center for Deaf-Blind Youths and Adults
141 Middle Neck Rd.
Sands Point, NY 11050
(516) 944-8900
(516) 570-3246 videophone
[email protected]
www.helenkeller.org/hknc

iCanConnect
800-825-4595 toll-free
888-320-2656 TTY
www.icanconnect.org

Institut Nazareth et Louis-Braille
1111 St. Charles W.
Longueuil, Quebec J4K 5G4
(450) 463-1710
800-361-7063 toll-free
[email protected]
www.inlb.qc.ca

Let Them Hear Foundation
1900 University Ave., Ste. 101
East Palo Alto, CA 94303
(650) 462-3174
[email protected]
www.letthemhear.org

Lighthouse Guild
250 W. 64th St.
New York, NY 10023
800-284-4422 toll-free
http://www.lighthouseguild.org

Nalaga’at Center
Retzif Haaliyah
Hashniya Box 6,
Jaffa Port
Tel Aviv-Jaffa 68031
+972-3-6330808
[email protected]
http://nalagaat.org.il/en/

National Center for Hearing Assessment and Management
Utah State University
2615 Old Main Hill
Logan, UT 84322
(435) 797-3584
http://www.infanthearing.org/index.html

National Center on Deaf-Blindness (NCDB)
141 Middle Neck Rd.
Sands Point, NY 11050
(503) 838-8754
(503) 838-8150
[email protected]
https://nationaldb.org/

National Deaf-Blind Equipment Distribution Program
445 12th St. SW
Washington, DC 20554
888-225-5322 toll-free
888-835-5322 TTY
844-432-2275 videophone
866-418-0232 fax
www.fcc.gov/general/national-deaf-blind-equipment-distribution-program

National Family Association for Deaf-Blind
PO Box 1667
Sands Point, NY 11050
800-255-0411 toll-free
800-255-0411 TTY
[email protected]
www.nfadb.org

National Federation of the Blind
200 E. Wells St. at Jernigan Place
Baltimore, MD 21230
(410) 659-9314
(410) 685-5653 fax
[email protected]
https://nfb.org/

National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
PO Box 5801
Bethesda, MD 20824
800-352-9424 toll-free
https://www.ninds.nih.gov

National Institute on Deafness and Other Communication Disorders (NIDCD)
Office of Health Communication and Public Liaison
31 Center Dr., MSC 2320
Bethesda, MD 20892-2320
(301) 827-8183
800-241-1044 toll-free
800-241-1055 TTY
[email protected]
https://www.nidcd.nih.gov

National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
(301) 594-5983
888-346-3656 toll-free
800-735-2278 TDD
https://www.nlm.nih.gov

National Organization for Rare Disorders (NORD)
National Headquarters
55 Kenosia Ave.
Danbury, CT 06810
(203) 744-0100
(203) 263-9938
http://rarediseases.org/

Nevada Dual Sensory Impairment
College of Education
University of Nevada, Reno/MS 299
Reno, NV 89557
(775) 784-6471
877-621-5045 toll-free (in state)
(775) 784-4384 fax
[email protected]
www.unr.edu/ndsip

Office of Special Education and Rehabilitative Services (OSERS)
U.S. Department of Education
400 Maryland Ave. SW
Washington, DC 20202-7100
(202) 245-7468
www.ed.gov/about/ed-offices/osers

Office of Special Education Programs
Office of Special Education and Rehabilitative Services
U.S. Department of Education
400 Maryland Ave. SW
Washington, DC 20202-2550
(202) 245-7459
www.ed.gov/offices/OSERS/OSEP

The Ohio Center for Deafblind Education
University of Cincinnati
Systems Development & Improvement Center (SDIC)
College of Education, Criminal Justice, & Human Services
3246 Henderson Rd.
Columbus, OH 43220
(614) 897-0020
https://ohiodeafblind.org

The Oregon Deafblind Project
Western Oregon University
The Research Institute
345 N. Monmouth Ave.
Monmouth, OR 97361
(503) 838-8328
[email protected]
wou.edu/rrcd/oregondb/

Paths to Literacy
Perkins School for the Blind
175 N. Beacon St.
Watertown, MA 02472
[email protected]
www.pathstoliteracy.org

Perkins School for the Blind
175 N. Beacon St.
Watertown, MA 02472
(617) 924-3434
[email protected]
www.perkinselearning.org

Perkins Solutions
175 N. Beacon St.
Watertown, MA 02472
855-206-8353 toll-free
(617) 972-7308
855-206-8353 toll-free
[email protected]
www.perkinsproducts.org

Sense for Deafblind People
101 Pentonville Rd.
London N1 9LG
+44 0300 330 9250
+44 300 330 9252 textphone
[email protected]
www.sense.org.uk

Sertoma
1912 E. Meyer Blvd.
Kansas City, MO 64132
(816) 333-8300
(816) 333-4320
http://sertoma.org

Special Education Service Agency
3501 Denali St., #101
Anchorage, AK 99503
(907) 334-1300
(206) 330-0306 fax
[email protected]
http://sesa.org

Teacher of Students with Visual Impairments
Attn: Carmen Willings
North Forsyth High School
3635 Coal Mountain Rd.
Cumming, GA 30028
https://www.teachingvisuallyimpaired.com

Texas School for the Blind and Visually Impaired
1100 W. 45th St.
Austin, TX 78756
(512) 454-8631
800-872-5273 toll-free
(512) 206-9453 fax
www.tsbvi.edu
https://www.tsbvi.edu

TRIO Programs
U.S. Department of Education
Office of Postsecondary Education
Lyndon Baines Johnson (LBJ) Building
400 Maryland Ave. SW
Mail Stop LBJ 2-261-05
Washington, DC 20202
(202) 453-6914
[email protected]
www2.ed.gov/about/offices/list/ope/trio

U.S. Department of Education Office of Special Education Programs Projects for Children Who Are Deaf-Blind
Charles Freeman
400 Maryland Ave. SW
Washington, DC 20202-2550
(202) 245-7347
[email protected]
http://www2.ed.gov/about/offices/list/osers/osep/index.html?src=mr

Usher Syndrome Coalition
63 Great Rd., Ste. 207
Maynard, MA 01754
855-998-7437 toll-free
(631) 533-9621 videophone
[email protected]
www.usher-syndrome.org

Washington Sensory Disabilities Services
800 Oakesdale Ave. SW
Renton, WA 98057
800-572-7000 toll-free (in state)
(425) 917-7827 voice and TTY
(425) 917-7838 fax
[email protected]
www.wsdsonline.org/

World Health Organization
Regional Office for the Americas
525 23rd St. NW
Washington, DC 20037
(202) 974-3000
(202) 974-3663 fax
www.paho.org/hq/

Updated January 2023

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