Deaf-Blindness - National Library Service for the Blind and Physically Handicapped (NLS)

Two framed photographs of Helen Keller, one with vase as a younger woman, and another stylized of her with her mirror image

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

This Deaf-Blindness Resource Guide is for deaf-blind individuals, parents of deaf-blind children, and educators and other professionals who work with deaf-blind children and adults. It is organized into four parts. Part one contains information resources about topics related to deaf- blindness. Part two suggests keywords to use for an Internet search of deaf-blindness. Part three is a bibliography of topics found in the information resources section, and part four provides contact information for the organizations listed in this guide.

Part One: Information Resources
Part Two: Keywords for Searching the Internet
Part Three: Bibliography
Part Four: Organizations

Part One: Information Resources

Congenital Causes of Deaf-Blindness

CHARGE Syndrome

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

Searches 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

Factsheet with signs and symptoms, causes, affected populations, therapies, and further resources.

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

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

Congenital Rubella Syndrome

Congenital Rubella: Health Guide
The New York Times
www.nytimes.com/health/guides/disease/congenital-rubella/overview.html

Causes, symptoms, treatment, and prevention of rubella syndrome in infants.

Congenital Rubella Syndrome (CRS)
National Center on Deaf-Blindness
www.cdc.gov/vaccines/pubs/surv-manual/chpt15-crs.html

Manual for the Surveillance of Vaccine-Preventable Diseases, “Chapter 15: Congenital Rubella Syndrome.” Research and practical articles 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 CRS, which can cause multiple disabilities, including deafness and vision impairment, in infants whose mothers contracted rubella in the first trimester.

Rubella Fact Sheet March 2016
World Health Organization
www.who.int/mediacentre/factsheets/fs367/en/

Key facts and symptoms of CRS and a plan to eliminate rubella worldwide.

General Information on Etiologies Related to Deaf-Blindness

Fact Sheet: Etiologies Related to Deafblindness
Colorado Services to Children with Deafblindness
www.cde.state.co.us/sites/default/files/documents/cdesped/download/pdf/dbetiologiesrelatedtodeafblindness.pdf [PDF: 104 KB / 11p.]

Lists syndromes and conditions that may cause combined vision and hearing loss in children.

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.

Etiologies of Deafblindness: Microcephaly
Nevada Dual Sensory Impairment Project
www.unr.edu/ndsip/deafblindness/Microcephaly.pdf [PDF: 142 / 98p.]

Factsheet on the causes of microcephaly and available treatments.

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

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

Microcephaly in Children
Boston Children’s Hospital
www.childrenshospital.org/conditions-and-treatments/conditions/microcephaly

Treatments, research, and programs and services for children who suffer from microcephaly. Questions and answers on the Zika virus’s connection to microcephaly.

NINDS Microcephaly Information Page
National Institute of Neurological Disorders and Stroke
https://www.ninds.nih.gov/Disorders/All-Disorders/Microcephaly-Information-Page

An introduction to the causes, treatments, prognosis, 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
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
www.asha.org/aud/articles/UsherSyndrome/

In-depth article on the genetic condition Usher’s 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’s syndrome, including progressive hearing and sight impairment. Focuses on the genetic aspects of Usher’s syndrome, such as inheritance pattern, frequency, and genetic changes.

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

An introduction to Usher’s 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’s and visual impairment, genetic counselors in family planning, and treatments that have been identified. Includes extensive bibliography and an appendix on intervention strategies such as sign communication and assistive technology.

Deaf-Blind Arts

Art within the Deaf and Blind
deafblindinfo.org
www.deafblindinfo.org/art-within/

An introduction to deaf-blind artists and art for people who are deaf-blind.

Arts and Wellbeing
Sense for Deafblind People
www.sense.org.uk/content/arts-and-wellbeing-0

Exploration of drama, music, film, visual, and tactile art by deaf-blind artists.

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

Creative arts courses that include adaptive techniques and tools.

Theater
Nalaga’at Center
http://nalagaat.org.il/en/theater-2/

Internationally touring deaf-blind theater troupe.

Discovering Our Potential: The Remarkable Story of a 17-Year-Old Piano-Playing Prodigy
National Center for Hearing Assessment and Management
www.infanthearing.org/videos/featured/yerko-difonis.php

Information about Yerko DiFonis, born blind and partially deaf, who learned piano and five other instruments. He lives and performs in New York City.

Deaf-Blind Assistive Technology

Appsolutely Engaging and Educational—Part 1: Using iPad Apps with Children with Visual Impairments and Additional Disabilities
Perkins School for the Blind
www.perkinselearning.org/videos/webinar/appsolutely-engaging-and-educational-part-1-using-ipad-apps

Webinar on iPad apps for children with multiple disabilities.

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.

Assistive Technology and Cochlear Implants for Children Who are Deaf-Blind—Research Bibliography
National Center on Deaf-Blindness
https://nationaldb.org/library/page/2274

Bibliography on assistive technology and cochlear implants for children who are deaf-blind.

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 students who are deaf-blind.

The Distance Mentoring Model: A New Method for a New Age
Center on Technology and Disability
http://ctdinstitute.org/library/2014-10-06/distance-mentoring-model-new-method-new-age

How to use technology to connect deaf-blind children with teacher’s assistants who specialize in deaf-blind education.

Communication Technology for Persons Who Are Deafblind
Perkins School for the Blind
www.perkinselearning.org/videos/webcast/communication-technology-persons-who-are-deafblind

Exhibition on communication technology for people who are deaf-blind.

Deaf-Blind Face-to-Face Interaction
Hadley Institute for the Blind and Visually Impaired
www.hadley.edu/SeminarDetails.asp?sid=291

Audio and transcript discussion of assistive technology for face-to-face communication options for people who are deaf-blind.

Deaf Blindness
Perkins Solutions
www.perkinsproducts.org/store/en/48-deaf-blindness

Assistive technology products for deaf-blind literacy and communication.

Deafblind Technology Solutions
Perkins School for the Blind
http://www.perkinselearning.org/videos/webinar/deafblind-technology-solutions

Webinar presents assistive technology products for people who are deaf-blind.

iOS for Deaf-Blind Users
Hadley Institute for the Blind and Visually Impaired
www.hadley.edu/SeminarDetails.asp?sid=294

Audio and transcript seminar about iOS for deaf-blind users.

National Deaf-Blind Equipment Distribution Program
Federal Communications Commission
www.fcc.gov/general/national-deaf-blind-equipment-distribution-program#block-menu-block-4

Information on the National Deaf-Blind Equipment Distribution Program, also known as iCanConnect.

Using the iPad and a Sequence of Apps for Young Children with Multiple Disabilities
California Deaf-Blind Services
files.cadbs.org/200002099-a637ba7323/reSourcesiPad.pdf [PDF: 336KB / 10p.]

Information on using the iPad and iPad apps as a communication and learning tool for young children with multiple disabilities.

Deaf-Blind Communication

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

Introduction to aided and unaided communication forms.

Communication between People with Deafblindness: How Could It Be Facilitated?
Institut Nazareth et Louis-Braille
www.inlb.qc.ca/wp-content/uploads/2015/01/Communication-between-people-with-deafblindness.pdf [PDF: KB104 / 19p.]

White paper on communication between people who are deaf-blind.

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/

Free tool assesses the communication status, progress, and needs of individuals using forms of communication other than writing and speaking. Includes research and a community message board for teachers, practitioners, and parents.

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

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

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

Joint statement of the World Association of Sign Language Interpreters and The World Federation of the Deafblind on promoting deaf-blind communication, literacy, education, and training, including that of interpreters, worldwide. Free PDF copy of 103 Haptic Signals for the English Language.

Colorado Services to Children with Deafblindness
www.cde.state.co.us/sites/default/files/documents/cdesped/download/pdf/dbhandskills.pdf [PDF: 67KG / 6p.]

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

Hands on Signing
Signed Language
www.signedlanguage.co.uk/hands-signing.html

An introduction to hand-over-hand signing, in which the sense of touch is used instead of sight.

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

Introduction to tactile strategies for deaf-blind communication.

Mobile Lorm Glove
Design Research Lab
www.design-research-lab.org/projects/mobile-lorm-glove/

Translates the Lorm alphabet into text on a smart phone. Currently in development.

Research on Tactile Communication of Speech: A Review
American Speech-Language-Hearing Association
http://www.asha.org/publications/

Research paper on tactile communication, including Tadoma, spectral displays, and lip reading.

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.

Social-Haptic Communication for Acquired Deafblind People and Family
Deafblind International
http://deafblindinternational.org/review1_shc.html

Summary of dissertation “Social-Haptic Communication for Acquired Deafblind People and Family: Incorporating Touch and Environmental Information through Holistic Communication.”

Tactile Strategies Information Sheets
Successful Adaptions for Learning to Use Touch Effectively
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. Pre-literacy introduction to non-contracted braille.

Deaf-Blind Education

AG Bell Financial Aid Programs Overview
Alexander Graham Bell Association for the Deaf and Hard of Hearing
www.agbell.org/financial-aid/overview/

Financial aid and awards programs for deaf and hard of hearing children preschool-age through primary school.

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

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

CollAERborations Newsletter
Association for Education and Rehabilitation of the Blind and Visually Impaired
https://aerbvi.org/about/divisions/multiple-disabilities-deafblind/

Newsletters and other resources from the Association for Education and Rehabilitation of the Blind and Visually Impaired’s Multiple Disabilities and Deafblind Division.

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

Information about the causes of deaf-blindness and its impact on learning. Includes teaching strategies, assistive technology, and organizations for people who are deaf-blind.

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

Article about meeting the educational needs of deaf-blind children.

Deaf Blind Education
Deaf Blind Info
www.deafblindinfo.org/

A short overview of the history of schools for people who are deaf-blind.

Deafblind Program
Perkins School for the Blind
www.perkins.org/school/educational-programs/deafblind

Includes the history of the program for people who are deaf-blind, the current curriculum, and the Perkins philosophy of deaf-blind education. Provides contact information.

Deaf-Blind Resources
Teaching Students with Visual Impairments
www.teachingvisuallyimpaired.com/deaf-blind-resources.html

A website by and for special-education teachers.

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

Provides the history of education and instruction of deaf-blind children and adults, including daily living skills, concept development, and literacy.

Interveners and Children who Are Deaf-Blind
Office of Special Education and Rehabilitative Services
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.

Legislative Efforts
National Coalition on Deafblindness
www.thedbcoalition.org/legislative-efforts/

Information about the Cogswell/Macy Act, which would promote and ensure delivery of high-quality special education and related services to students with visual disabilities or who are deaf or hard of hearing or deaf-blind through instructional methodologies meeting their unique learning needs.

Literacy for Students with Multiple Disabilities or Deafblindness
Perkins School for the Blind
www.perkinselearning.org/scout/literacy-students-multiple-disabilities-or-deafblindness

Articles and webinars with information about students who have multiple disabilities or deaf-blindness.

Ohio Center for Deafblind Education
School Age
https://ohiodeafblind.org/deafblind-information/school-age

Parent resources on K-12 and post-secondary education for students who are deaf-blind. Includes interactive hearing and vision decision trees and checklists 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.

Parent Advocacy Training Course
Alexander Graham Bell Association for the Deaf and Hard of Hearing
www.agbell.org/PAT/

Free online course in English and Spanish describes the legal framework of the Individuals with Disabilities Act, provides a four-step process for creating an Individualized Education Program, and teaches the Know-Act-Do Negotiation Model to parents advocating for their 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 about creating tactile representations of real-life experiences for deaf-blind children to use. Gives examples and explores considerations.

Resources for Teens
Alexander Graham Bell Association for the Deaf and Hard of Hearing
www.agbell.org/Tertiary.aspx?id=1231

Resources for teens and young adults with hearing loss.

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

Lists primary and secondary schools for blind students in the United States.

Deaf-Blind Post Secondary Education and Employment

Career Center
Alexander Graham Bell Association for the Deaf and Hard of Hearing
www.agbell.org/Jobs/

Recruitment resources that match qualified candidates with employers .

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 Scholarship Programs
Alexander Graham Bell Association for the Deaf and Hard of Hearing
www.agbell.org/financial-aid/college-scholarship-program

Information on post-secondary scholarship programs offered bythe Alexander Graham Bell Association for the Deaf and Hard of Hearing.

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

This 2011 study on college students who are deaf-blind suggests ways to support them.

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

Information about 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
www.deafblindinternational.org/publications_services.html

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 about 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.

Transition to Adult Life for Youth with Deaf-Blindness: A Parent Mini-Guide
Perkins School for the Blind
www.perkinsproducts.org/sites/default/files/assets/downloads/publications/transition_to_adult_life_mini_guide.pdf [PDF: 254KB / 5p.]

A brief guide for parents about the transition to adult life of deaf-blind young adults.

Transition – Friendship and Social Networks Bibliography
National Center on Deaf-Blindness
https://nationaldb.org/library/page/1952

Bibliography on deaf-blind employees in the workplace, and deaf-blind development of social skills, friendships, and social networks.

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

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

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 changes s in sight and hearing as one ages.

Behavioral Risk Factors and Dual Sensory Impairment
Lighthouse International
http://li129-107.members.linode.com/research/archived-studies/behavioral/

Overview of Arlene R. Gordon Research Institute study on dual sensory impairment and limited health.

Combined Vision & Hearing Loss in Adults and Seniors
Perkins School for the Blind
www.perkinselearning.org/scout/combined-vision-hearing-loss-adults-seniors

Information on combined vision and hearing loss in older adults.

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

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

National Services for Senior Citizens
Helen Keller National Center for Deaf-Blind Youths and Adults
www.helenkeller.org/hknc/national-services-senior-citizens

Resources for senior citizens with multiple disabilities.

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
www.deafblindinternational.org/index.htm

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

Deaf-Blind Video Topics
Washington Sensory Disabilities Services
www.wsdsonline.org/video-library/deaf-blind-videos/

Instructional videos about communication techniques, daily living, peer programs, and tactile and active learning for deaf-blind children.

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

Definitions of deaf-blindness. Includes a discussion of 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.

Videos Related to Deafblindness and Multiple Disabilities
Perkins School for the Blind (eLearning)
www.perkinselearning.org/videos/deafblindness-and-multiple-disabilities

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

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: Keywords for Searching the Internet

Acquired causes of deaf-blindness
- Toxoplasmosis
Assistive technology—deaf-blind
Congenital causes of deaf-blindness
- CHARGE syndrome
- Microcephaly
- Rubella
- Usher syndrome
- Usher’s syndrome
- Zika virus
Deaf blind
Deaf-blind
Deaf-blind and the aged
Deaf-blind art
Deaf-blind artists
Deafblind children
Deaf-blind children
Deaf-blind children—education
Deaf-blind children—literacy
Deaf-blind employment
Deaf-blind infants
Deaf-blind people—(country, city, or state)
Deaf-blind people—biography
Deaf-blind people—biography name (example Hellen Keller)
Deaf-blind people—education
Deaf-blind people—law and legislation (country, city, or state)
Deaf-blind people—means of communication
Deaf-blind people—means of communication hand-over-hand
Deaf-blind people—means of communication Tadoma method
Deaf-blind people—rehabilitation
Deaf-blind people—services
Deaf-blind social networks
Deaf-blind transition to adulthood
Deaf-blind women
Deafblindness
Deaf-blindness
Dual sensory loss
Seniors—vision and hearing loss
Teachers of deaf-blind people

Part Three: Selective Bibliography

Ahuja, S. (Ed.) (2001). Usher syndrome: Pathogenesis, diagnosis, and therapy. New York: Nova Science Publishers.

Aitken, S., Buuljens, M., Clark, C., Eyre, J. T., & Pease, L. (Eds.). (2013). Teaching children who are deafblind: Contact, communication and learning. Hoboken, NJ: Taylor and Francis.

Battersby, M. (2011, December 8). Deafblind artists give unique vision of the world. The Independent. Retrieved from www.independent.co.uk/arts-entertainment/art/news/deafblind-artists-give-unique-vision-of-the-world-6273979.html#gallery

Blake, K. D., Salem-Hartshore N., Daoud, M. A., & Gradstein, J. (2005). Adolescent and adult issues in CHARGE syndrome. Clinical Pediatrics, 44, 151-159.

Brennan, M., Horowitz, A., & Ya-Ping, S. (2105). Dual sensory loss and its impact on everyday competence. The Gerontologist, 45(3), 337-346.

Busacco D. (2011). Rehabilitation strategies for older adults with dual sensory loss. Hearing Review, 18(8), 40-42.

Chomsky, C. (1994). Analytic study of the Tadoma method: Language abilities of three deaf-blind subjects. In C.P. Otero, (Ed.), Noam Chomsky: Critical assessments (pp. 548-581). New York, NY: Routledge.

Crews, J. E., & Campbell, V. A. (2004). Vision impairment and hearing loss among community-dwelling older Americans: Implications for health and functioning. American Journal of Public Health, 94(5), 823–829.

Fletcher, P. C. & Guthrie, D. M. (2013). The lived experiences of individuals with acquired deafblindness: Challenges and the future. International Journal of Disability, Community & Rehabilitation, 12(1). Retrieved from www.ijdcr.ca/VOL12_01/articles/fletcher.shtml

Gargiulo, R. M. (2006). Special education in contemporary society: An introduction to exceptionality. Belmont, CA: Thomson Wadsworth.

Garcia-Navarro, L. (2016, January 20). “Zika virus likely affected her baby, and she feels Brazil doesn’t care.” NPR. Retrieved from www.npr.org/sections/goatsandsoda/2016/01/20/463620717/zika-virus-likely-affected-her-baby-and-she-feels-brazil-doesnt-care

Hartshorne, T. S., Hefner, M. A., Davenport, S. L. H., & Thelin, J. W. (2011). CHARGE syndrome. San Diego, CA: Plural Publishing.

Heine, C., & Browning, C. (2015). Dual sensory loss in older adults: A systematic review. The Gerontologist, 55(5), 913-928.

Heine, C., & Browning, C. J. (2002). Communication and psychosocial consequences of sensory loss in older adults: Overview and rehabilitation directions. Disability and Rehabilitation, 24(15), 763-773.

Horsch, U. & Schelle, A. (Eds.). (2011). Compendium on CHARGE syndrome. Heidelberg, Germany: University of Heidelberg.

Huebner, K. M., Prickett, J. G., Welch, T. R., & Joffee, E. (Eds.). (1995). Hand in hand: Selective reprints and annotated bibliography on working with students who are deaf-blind. New York, NY: American Foundation for the Blind.

JAMA and Archives Journals. (2006, October 11). Vision and hearing loss often occur together in older age. ScienceDaily. Retrieved from www.sciencedaily.com/releases/2006/10/061010022657.htm

Kershner, I. (2013, January 15). 2 senses missing, 3 others step up. The New York Times. Retrieved from www.nytimes.com/2013/01/16/theater/nalagaat-israeli-troupe-of-deaf-blind-actors.html

Kimberling, W. J. (2004). Genetic hearing loss associated with eye disorders. In H. V. Toriello, W. Reardon, & R. J. Gorlin (Eds.), Hereditary hearing loss and its syndromes (pp. 126–165). New York: Oxford University Press.

Klatell, J. “The deaf-blind tech wiz.” Narr. by Michelle Miller. CBS News. (17 June 2006). Retrieved from www.cbsnews.com/news/the-blind-deaf-tech-wiz

Lewin-Leigh, B. (2007). Standards for services for adults who are deafblind or have a dual sensory impairment. Sense. London, England.

McDonnall, M. C. (2011). The effect of productive activities on depressive symptoms among older adults with dual sensory loss. Research on Aging, 33(3), 234-255.

McInnes, J. M. (Ed.). (1999). A guide to planning and support of individuals who are deafblind. Toronto, Canada: University of Toronto Press.

McLinden, M. & McCall, S. (2002). Learning through touch. Supporting children with visual impairment and additional difficulties. London, England: David Fulton Publishers.

Melo, M. B., et al. (2013, December 19). Transcriptional analysis of murine macrophages infected with different toxoplasmastrains identifies novel regulation of host signaling pathways. PLOS Pathogens. Retrieved from http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1003779

Miles, B. (2000, January). Literacy for persons who are deaf-blind. [DB-LINK Fact Sheet]. Retrieved from http://eric.ed.gov/?id=ED442215

Miles, B. (1997). Talking the language of the hands to the hands. The importance of hands for the person who is deafblind. [DB-LINK Fact Sheet]. Retrieved from http://eric.ed.gov/?id=ED419331

Miles, B., & Riggio, M. (1999). Remarkable conversations: A guide to developing meaningful communication with children and young adults who are deaf-blind. Watertown, MA: Perkins School for the Blind.

National Consortium on Deaf-Blindness, National Center on Deaf-Blindness. (2013, August 31). Communication practices with children who are deaf-blind: Evidence-based bibliography. Retrieved from https://nationaldb.org/library/page/2285

National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. ASHA, 34 (March, Supp. 7), 1-8.

Nordstrom, B. H. (1986). History of the education of the blind and deaf. Washington, DC: U.S. Department of Education. Retrieved from http://files.eric.ed.gov/fulltext/ED309614.pdf [PDF: 318KB / 24p.]

Orzech, D. (2007, January/February). Betrayed by our bodies—Sensory loss in aging. Social Work Today, 7(1). Retrieved from www.socialworktoday.com/archive/janfeb2007p20.shtml

Petroff, J. G. (1999). A national transition follow-up study of youth identified as deaf-blind: Parent perspectives. Temple University, Philadelphia.

Reed, C. M. (1996). The implications of the Tadoma method of speechreading for spoken language processing. Spoken Language. Fourth International Conference on Spoken Language Processing, Philadelphia, PA. Retrieved from www.asel.udel.edu/icslp/cdrom/vol3/1002/a1002.pdf [PDF: 79 KB / 8p.]

Riggo, M. & McLetchie, B. (Eds.). (2008) Deafblindness: Educational service guidelines. Watertown, MA: Perkins School for the Blind. Retrieved from www.spannj.org/resources/Deaf_Blindness_Ed_Service_Guidelines.pdf[PDF: 638KB / 139p.]

Shiprintzen, R. J. (2000). Syndrome identification for speech-language pathologists. San Diego, CA: Singular Publishing Group.

Sun, L. H. (2016, February 9). Zika tied to major eye defects in babies with microcephaly, study finds. The Washington Post. Retrieved from www.washingtonpost.com/national/health-science/zika-tied-to-major-eye-defects-in-babies-with-microcephaly-study-finds/2016/02/09/449ee072-cf7c-11e5-b2bc-988409ee911b_story.html

Tabak, J. (2006). The deafblind and American Sign Language. In Significant gestures: A history of American sign language annotated edition (pp. 156-180). Santa Barbara, CA: Praeger.

Turnbull, A., Turnbull, R., & Wehmeyer, M. L. (2007). Exceptional lives: Special education in today’s schools. Upper Saddle River, NJ: Pearson Merrill Prentice Hall.

Part Four: Organizations

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

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

American Association of the Deaf-Blind
PO Box 24493
Federal Way, WA 98093
[email protected]
http://www.aadb.org/

American Foundation for the Blind
2 Penn Plaza, Ste. 1102
New York, NY 10121
800-232-5463 toll-free
(212) 502-7600
[email protected]
www.afb.org

American Speech-Language Hearing Association (ASHA)
ASHA National Office
2200 Research Blvd.
Rockville, MD 20850-3289
800-498-2071 toll-free
(301) 296-5700
(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
[email protected]
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
[email protected]
https://aerbvi.org

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
http://www.cadbs.org/

Campus Explorer
2850 Ocean Park Blvd., Ste. 310
Santa Monica, CA 90405
www.campusexplorer.com/

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

Center on Technology and Disability
FHI 360
1825 Connecticut Ave. NW
Washington, DC 20009
[email protected]
www.ctdinstitute.org

Center for Deaf-Blind Persons
3195 S. Superior St.
Milwaukee, WI 53207
844-638-5800 toll-free
www.deaf-blind.org

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., Ste. 305
Buffalo Grove, IL 60089
(516) 684-4720
800-442-7604 toll-free
[email protected]
www.chargesyndrome.org

Colorado Services to Children with Deafblindness
Colorado Department of Education
Exceptional Student Leadership Unit
1560 Broadway, Ste. 1175
Denver, CO 80202
(303) 666-6767
www.cde.state.co.us/cdesped/sd-db_projectinfo

Communication Matrix Community
Child Development & Rehabilitation Center
Oregon Health & Science University
707 SW Gaines St.
Portland, OR 97239-3098
[email protected]
https://communicationmatrix.org/community

Deaf-Blind Division of the National Federation of the Blind
4122 Mary Ann Ln.
Lake Charles, LA 70605
Mailing List: www.nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org

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

Deafblind International (DbI)
PO Box 143
Burswood, WA 6100
Australia
+61 8 9473 5400
+64 8 9473 5488 fax
[email protected]
www.deafblindinternational.org/index.htm

Design Research Lab
Berlin University of the Arts
Einsteinufer 43
10587 Berlin
Germany
[email protected]
www.design-research-lab.org/about

Deaf-Blind Division of the NFB
216 W McNeal St.
Millville, N J 08332
(856) 765-0601
[email protected]
www.nfbnet.org/mailman/listinfo/nfb-db_nfbnet.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
Gainsville, FL 32610
800-667-4052 toll-free
(352) 273-7530
http://deafblind.ufl.edu/

Foundation for Fighting Blindness
7168 Columbia Gateway Dr., Ste. 100
Columbia, MD 21046
www.blindness.org/

Georgia Sensory Assistance Project
College of Education
University of Georgia
Dean’s Office
G3 Aderhold Hall
110 Carlton St.
Athens, GA 30602
[email protected]
http://gsap.coe.uga.edu/

Genetic and Rare Diseases (GARD)
PO Box 8126
Gaithersburg, MD 20898-8126
(301) 251-4925
888-205-2311 toll-free
http://rarediseases.info.nih.gov/GARD/

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 VP
[email protected]
www.helenkeller.org/hknc

HIMS Inc.
4616 W. Howard Ln., Ste. 960
Austin, TX 78728
888-520-4467 toll-free
[email protected]
https://hims-inc.com/

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

Information about Deafblindness
[email protected]
www.deafblind.com

Institut Nazareth et Louis-Braille
1111 St. Charles W
Longueuil, PQ J4K 5G4
Canada
800-361-7063 toll-free
(450) 463-1710
[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 International
111 E. Fifty-Ninth St.
New York, NY 10022
800-284-4422
http://li129-107.members.linode.com/

Nalaga’at Center
Box 6, Jaffa Port
Tel Aviv-Jaffa, 68031
Israel
[email protected]
http://nalagaat.org.il/en/

National Association for Parents of Children with Visual Impairments
PO Box 317
Watertown, MA 02272-0317
(617) 972-7441
800-562-6265 toll-free
[email protected]
www.napvi.org

National Center on Deaf-Blindness
345 N. Monmouth Ave.
Monmouth, OR 97361
(503) 838-8754
[email protected]
https://nationaldb.org/

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

National Coalition on Deafblindness
175 N. Beacon St.
Watertown, MA 02472
(617) 972-7768
www.dbcoalition.org/

National Consortium on Deaf-Blindness
The Teaching Research Institute
345 N. Monmouth Ave.
Monmouth, OR 97361
800-438-9376 toll-free
[email protected]
www.nationaldb.org

National Consortium of Interpreter Education Centers
[email protected]
www.interpretereducation.org/

National Deaf-Blind Equipment Distribution Program
Federal Communications Commission
445 Twelfth St. SW
Washington, DC 20554
888-225-5322 toll-free
888-835-5322 TTY
844-432-2275 Videophone
www.fcc.gov/general/national-deaf-blind-equipment-distribution-program

National Family Association for Deaf-Blind
141 Middle Neck Rd.
Sands Point, NY 11050
800-255-0411, ext. 275 toll-free
800-255-0411 TTY
[email protected]
www.nfadb.org

National Federation of the Blind
200 E. Wells St.
Baltimore, MD 21230
(410) 659-9314
https://nfb.org/

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

National Institute on Deafness and Other Communication Disorders
Office of Health Communication and Public Liaison
31 Center Dr., MSC 2320
Bethesda, MD 20892-2320
(301) 496-7243
(301) 402-0018 fax
[email protected]

National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
PO Box 5801
Bethesda, MD 20824
800-352-9424 toll-free
(301) 496-5751
https://www.ninds.nih.gov/

The National Family Association for Deaf-Blind
141 Middle Neck Rd.
Sands Point, NY 11050
800-255-0411 toll-free
[email protected]
http://nfadb.org/

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

National Task Force on DeafBlind Interpreting
Registry of Interpreters for the Deaf
Commerce Street
Alexandria, VA 22314
(703) 838-0030
(571) 257-0454 Videophone
http://rid.org

National Technical Assistance Consortium for Children and Young Adults Who are Blind-Deaf
Teaching Research Institute
Western Oregon University
345 N. Monmouth Ave.
Monmouth, OR 97361
(503) 838-8808
(503) 838-9623 TTY
www.tr.wou.edu/ntac

Nevada Dual Sensory Impairment
College of Education/MS278
University of Nevada, Reno
Reno, NV 89557
877-621-5045 toll-free
(775) 784-6471
www.unr.edu/ndsip

The New York Times
620 Eighth Ave.
New York, NY 10018
www.nytimes.com

Office of Special Education and Rehabilitative Services
Department of Education
400 Maryland Ave. SW
Washington, DC 20202-7100
(202) 245-7468
www2.ed.gov/about/offices/list/osers/contacts.html

The Oregon Deafblind Project
Western Oregon University
The Research Institute
345 N. Monmouth Ave.
Monmouth, OR 97361
(503) 838-8328
www.oregondb.org/OverviewHome.html

The Ohio Center for Deafblind Education
University of Dayton
School of Education and Health Sciences Grant Center
5747 Perimeter Dr., Ste. 100A
Dublin, OH 43017
(614) 785-1163
https://ohiodeafblind.org/

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
www.perkinselearning.org

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

Project SALUTE (Successful Adaptations for Learning to Use Touch Effectively)
Michael D. Eisner College of Education
CSU Northridge
ED 3121
18111 Nordhoff St.
Northridge, CA 91330-8265
(818) 677-2590
www.projectsalute.net/index.html

SEE/HEAR Newsletter
Texas School for the Blind and Visually Impaired
1100 W. Forty-Fifth St.
Austin, TX 78756
800-872-5273 toll-free
(512) 454-8631
http://www.tsbvi.edu/

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

Sertoma
1912 E. Meyer Blvd.
Kansas City, MO 64132
(816) 333-08300
http://sertoma.org/

Special Education Guide
Degree Prospects, LLC
1133 Fifteenth St. NW, Twelfth Floor
Washington, DC 20005
[email protected]
www.specialeducationguide.com/

Special Education Service Agency
3501 Denali St., Ste. 101
Anchorage, AK 99503
(907) 334-1300
http://sesa.org/

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

TRIO Programs
U.S. Department of Education
Office of Postsecondary Education
LBJ Building
400 Maryland Ave. SW
Washington, DC 20202
[email protected]
www2.ed.gov/about/offices/list/ope/index.html

U.S. Department of Education Office of Special Education Programs Projects for Children Who Are Deaf-Blind
Charles Freeman
400 Maryland Ave.
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
2 Clock Tower Pl., Ste. 418
Maynard, MA 01754
855-998-7437
(631)533-9621 VP
www.usher-syndrome.org

VisionAware
[email protected]
www.visionaware.org/info/get-connected/about-visionaware/12

Washington Sensory Disabilities Services
800-572-7000 toll-free
(425) 917-7827 Voice and TTY
[email protected]
www.wsdsonline.org/

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

Contents