Deafblindness

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Deafblindness is the condition of little or no useful sight and little or no useful hearing. Deafblind people have an experience quite distinct from people who are only deaf or only blind.

The deaf-blind child is one who has a combination of auditory and visual disabilities that adversely affects a child’s educational performance. These disabilities must also cause such severe communication and other developmental and educational needs that the child cannot be accommodated in special education programs solely for children with hearing disabilities or with visual disabilities. Deaf-blindeness has one of the lowest incidence rates of all disabilities, yet it is one of the most diversse in terms of learning profiles.^[1] Despite the initial perception of deaf-blind meaning total blindness and no hearing, many deaf-blind children have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances, and perhaps, read large print. Other deaf-blind people have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. According to the National Deaf-Blind Census, more deaf-blind people have some functional use of their vision than have some hearing.^[2] However, deaf-blindness restricts the lifestyle and many activities that deaf-blind persons can achieve. When hearing and vision both fall into the ranges of severe or profound losses, the immediate world may well end at one’s fingertips.^[3]

Contents 1 History 2 Characteristics 3 Causes 4 Challenges 5 Prevalence 6 Assistive Technology and Communication 7 Educational Implications 7.1 Assessment 7.2 Accommodations 7.3 Early Intervention 8 Transition 9 Prominent deafblind people 10 See also 11 References 12 External links

[edit] History

Deaf-blindness has one of the lowest incidence rates of all disabilities, yet it is one of the most diverse in terms of learning profiles.^[4] Deaf-blindness usually is associated with having no vision and no hearing abilities. However, this is not true for the majority of deaf-blind people. The vast majority of deaf-blind persons have residual hearing and/or vision. According to the National Deaf-Blind Census, more deaf-blind people have some functional use of their vision than some have hearing.^[5] Deaf-blind children’s world is often very restrictive. When hearing loss and vision both fall into ranges of severe or profound losses, the immediate world may well end at the tip of one’s fingertips.^[6]

In 1969, special funding students with deaf-blindness began. The national funding was a direct response to the rubella epidemic that had affected the entire nation, resulting in dramatic increases in the numbers of babies with disabilities, particularly blindness, deafness and deaf-blindness. IDEA defines deaf-blindness as follows: Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and learning needs that the persons cannot be appropriately educated in special education programs solely for children and youth with deafness or children with blindness.^[7] The National Consortium on Deaf-Blindness introduced a more functional definition of deaf-blindness. Although the term deaf-blind implies a complete absence of hearing and sight, in reality, it refers to children with varying degrees of vision and hearing losses. The type and severity differ from child to child. The key feature of deaf-blindness is that combination of losses limits access to auditory and visual information.^[8] Obviously, this definition is more functional and potentially leads to a more accurate identification of those involved, as well as the provision of appropriate services for these students.^[9]

[edit] Characteristics

Deaf-blindness may be present at birth. Other children may be born deaf or hard of hearing and become blind or visually impaired later in life; or the reverse may be the case. Still others may be born with both sight and hearing but lose some or all of these senses as a result of an accident or illness. Deaf-blindness is often accompanied by additional disabilities. For example, maternal rubella can also affect the heart and the brain. Some genetic syndromes or brain injuries that cause deaf-blindness may also cause developmental delays and/or physical disabilities (orthopedic impairment).

There are no correlations between the degree and amount of vision and hearing loss in the deaf-blind. The combination of these two losses also affects each person differently. Increasingly, over the last twenty years, more and more individuals included in the National Deaf-Blind Census have more than one existing coexisting disability.^[10] In fact, it is estimated that over ninety percent of these individuals have multiple disabilities.^[11]

Deaf-blindness is a very serious disability. Its repurcussoins effect everyone involved: the individuals, their families and their teachers. There are three important characteristics that teachers and family members should consider: feelings of isolation, problems with communication and problems with mobility.^[12] The feeling of isolation is a particular problem for many deaf-blind individuals. A chief objective of any person working with deaf-blind would be to create a sense of inclusion to combat the terrible feelings of isolation.

[edit] Causes

Although most causes of deaf-blindness are unknown, prematurity and heredity are the most common reasons.^[13] Heredity’s role is actually becoming more apparent. In 1994, eighteen different hereditary syndromes had been associated with this disability.^[14] Today there are more than fifty genetic causes of deaf-blindness identified.^[15]

Usher syndrome is believed be accountable for almost half of all deaf-blind cases.^[16] All three types of Usher Syndrome are characterized by congenital deafness and progressive blindness, along with intellectual disabilities. Many suffering from Usher syndrome are born deaf and lose their ability to see across their lifespan. Further, many have problems walking, balancing and managing various other motor activities. There has been prevalence of Usher syndrome in Louisiana especially. Fifteen to twenty percent of students with deaf-blindness have Usher syndrome and thirty percent of all deaf individuals in Louisiana are in three isolated parishes.^[17]

[edit] Challenges

There are three primary characteristics that teachers and family members of deaf-blind must remember: feelings of isolation, problems with communciation, and problems with mobility.^[18] A deaf-blind person has to make sense of the world using the limited information available to them. The challenges facing a deaf-blind person can be overwhelming if the person’s sensory disabilities are great, and if teachers and family have not provided the deaf-blind person with an environment that enables to better function and process the world. The deaf-blind world is ultimately restrictive, so it is especially important for teachers and family members to address the obstacles facing the deaf-blind person accordlingly. Behavioral and emotional difficulties are often present in deaf-blindness. Including deaf-blind students in various activities are critical to reducing the feelings of isolation that are often associated with deaf-blind.

Communication is critical to the deaf-blind person, perhaps the greatest challenge that faces them. Many deaf-blind children never learn to talk, therefore they are depedant on others to help them learn to communicate. The ultimate goal is to enable the deaf-blind person to function as normally as possible in the real world with as much indepedance as possible. Communication can often be enabled via interpreters, books, and electronic communication devices. However, for many deaf-blind individuals, the way they approach the world is through touch.^[19] Therefore, manual communication forms such as sign language, body language and gestures are the only means of communicating. Hand over hand is a means of communication used by many deaf-blind people with severe communication problems. Hand over hand is a tactile form of sign language where the signs are conveyed via touch.^[20] The fingers are essentially placed in the other person’s palm to convey information and communication.

Mobility is another serious challenge is another serious challenge that faces deaf-blind students. Again, the goal is to provide as much freedom and independence as possible for the deaf-blind person as they progress into adulthood. Deaf-blind people severly restricted abilities often put them in potentially dangerous situations. Purposeful movement, or becoming aware of one’s environment, changing locations, seeking protection from danger, and deciding when to move are goals that deaf-blind people and their support staff strive for.

The goal of facing the many challenges of deaf-blind people is to prepare them for independent living and maximizing their talents and abilities the best way possible. Many adults who are deaf-blind are able to lead independent or semi-independent lifestyles and have fulfilling work and social lives. Again, the degree of independence and freedom a deaf-blind person experiences will depend on the quality of education and support they have been receiving since childhood.

[edit] Prevalence

Two different databases are used to record the number of students with deaf-blindness.^[21] One is maintained by the national technical assistance center funded by the federal government and is broken down on a state by state basis. It is often called the National Deaf-Blind Census. The other database is kept by OSEP, the division of the U.S. Department of Education that is charged with the responsibility of implementing IDEA.^[22] The Census contains information not about students with vision and hearing loss, but further detailed breakdowns of the specific types of vision and hearing losses of students in various categories across all fifty states. The OSEP database includes students with a combinatoin of hearing and vision losses only.

The National Child Count of Children and Youth who are deaf-blind is the first and longest running registry and knowledge base of children who are deaf-blind in the world. It has been maintained for over twenty-five years via work with the NCDB, its predecessors and each state/multi-state deaf-blind project throughout the country.^[23] Consistent with the priorities under which NCDB, its predecssors, and the state/multi-state projects are funded, this national child count is used to identify natoinal and state technical assistance needs for children and youth who are deaf-blind, their families, and the service providers and systems under which serve them.^[24]

The child count is conducted each year on December 1st to supplement OSEP’s federal Part C and Part B Child Counts, which include deaf-blind only when deaf-blindness is their single disability. In contrast to this, the Deaf-Blind Child Count data is collected for children with deaf-blindness in isolation, as well as those with additional disabilities.^[25] Across the nation, six-hundred seventy-five infants and nine-thousand four hundred fifty-two children and young adutls aged three to twenty-one were identified and reported as deaf-blind by the state/multi-state projects on December 1, 2007.^[26] An additional forty seven students were reported by those state/multi-state projects, who by their respective State’s legislation or regulation, continue to provide services through the end of the school year in whihch the student turns twenty-two years old; thus a total of ten-thousand one-hundred seventy-four infants, children and young adults were identified as deaf-blind by the state/multi-state projects representing 4.4 percent increase from the previous year.

In reviewing the child count data over the years, it is apparent that no single portrait can be painted to represent a typical child with deaf-blindness. Children who are deaf-blind are as varied as the number reported and the nature and the exten of deaf-blindness in children is often misunderstood.^[27] Again, these deaf-blind children represent a very low incidence, yet most diverse group of learners receiving early intervention and special education services. They are an extremely heterogeneous group whose sensory losses may be accompanied by additional physical or cognitive disabilities, complex medical needs and /or behavioral challenges.^[28] Concerns about the under-identification of deaf-blindness and its resulting unique intervention requirements has been a consistent problem and one which results in a lack of, or delay in receiving, appropriate intervention and instruction criticla to children’s early development.^[29]

[edit] Assistive Technology and Communication

Deafblind people communicate in many different ways determined by the nature of their condition, the age of onset, and what resources are available to them. For example, someone who grew up deaf and experienced vision loss later in life is likely to use a sign language (in a visually-modified or tactual form). Others who grew up blind and later became deaf are more likely to use a tactile mode of their spoken/written language. Methods of communication include:

• Use of residual hearing (speaking clearly, hearing aids) or sight (signing within a restricted visual field, writing with large print).
• Tactile signing — sign language or a manual alphabet such as the American Manual Alphabet, or DeafBlind Alphabet (also known as "two-hand manual") with tactile or visual modifications.
• Interpreting services (such as sign language interpreters or communication aides)
• Communication devices such as Tellatouch, and its computerized version known as the TeleBraille.

Multisensory methods have been used to help deafblind people enhance their communication skills. These can be taught to very young children with developmental delays (to help with pre-intentional communication), young people with learning difficulties, or older people, including those with dementia. One such process is Tacpac.

The federal government has begun to invest large amounts of money towards technology for the deaf-blind. According to the U.S. Census Bureau (2007), some thirty-six percent of people with severe disabilities use a computer and twenty-nine percent of them access the Internet. Technology provides the following benefits to the deaf-blind: communicate more effectively, increase their independence, control their environments, have greater mobility, and gain access to information.^[30] The Eyegaze Communicator is a device that allows for communication via the eyes. The caregiver tracks the patient’s eye movement and uses eyegazes as the means to determine letter locations, which are displayed on an LCD screen. The cost is nearly thirteen-hundreed dollars. The Smart/128 is a multilevel communication device. It can be used as a pictorial communication device by simply utilizing a flash memory card to allow for communication. Smart / Speak is another device that allows for multiple levels of communication. There is a ‘real-voice” technology that can record the users voice and also a touching pad that allows for direct selection. These technologies are, however, not inexpensive, so having the financial ability or funding to invest in these technogies is important.

[edit] Educational Implications

Deaf-blindness presents a double challenge to educators. Impairments of both sight and hearing require thoughtful and unique educational approaches in order to ensure these children have the opportunity to realize success in reaching their potential. The challenge of learning language is perhaps the greatest one that children who are deaf-blind face. Language holds the power to make their thoughts, needs, and desires known. The ability to use words can also open up worlds beyond the reach of their fingertips through the use of an interpreter, books, and an ever increasing array of electronic communication devices. In order to learn language, children who are deaf-blind must depend on others to make language accessible to them. Even with a method of communication, language is a challenge of interaction based on the level of their abilities. As mentioned earlier, feelings of isolation often accompany extreme forms of deaf-blindness, therefore teachers and instructors should include these students in activities and attempt to break down their walls of isolation.

[edit] Assessment

Assessment is a critical part of identifying deaf-blindness, especially as the low incidence disabilities have totally different assesment methods than the high-incidence disabilities.^[31] There are however many tools and technologies avaialble to assist parents in identifying deaf-blind children at a very young age. Universal infant screenings, improved medical technology and more informed children’s doctors are allowing deaf-blind children to be identified as early as infnats or toddler stages. Assessment also occurs at the state and and districtwide levels, however these deaf-blind students are often tested using alternative testing methods.

The assessment process has vastly increased in the last decade. In 1988 there were only one-hundred twenty-eight thousand families receiving special services, but in 2006 there were three-hundred four-thousand five-hundred ten cases.^[32]

[edit] Accommodations

Remember, IDEA ’04 and the No Child Left Behind Act reuquire all students, those with and without disabilities, to be included in national accountability systems. Various accomodations already exist such as braille tests and giving students extra time and there are also modifications that exist too, such as altered tests to reflect abbreviated learning objectives. Alternate assessments are provided for students who are not following the general education curriculums. Alternative achievement standards are how the students are tested using the alternate assessments. The standards can potentially contain fewer objectives or different expectations than those outlined in the general education curriculum. Alternate assessments also allow for measuring how progress of students using the alternative curricula. Therefore, the tests refelct academic skills and possibly also functional skills that are targets of instruction and specified on the student’s IEP.

IDEA stipulates that the alternate assessments must: be aligned with state’s challenging academic content and student achievement standards and measure student achievement against any alternate academic achievement standards that the state has developed.^[33] If an IEP Team detemrines that a student should take an alternative assessment, the IEP must include: a statement of why the child cannot participate in the regular assessment, an explanation of why the selected alternate assessment is appropriate for the student and a description of benchmarks, or short-term objectives, that are aligned with alternate achievement standards.^[34]

[edit] Early Intervention

The importance of students with deaf-blindness receiving early intervention is critical to their long term educational and social development. The following are five outcomes that are outlined in IDEA ’04 regarding low incidence disabilities: understand their children’s strengths, abilities and special needs; know their rights and advocate effectively for their children; help their child develop and learn; have a support system and access desired services, programs and activities in the community.^[35]

Aceess to the general education by deaf-blind students is very challenging as well. In fact, many students with low incidence disabilities do not receive access to the general curriculum. Many of these students do not spend the majority of their time in a general education setting. Many students do for a portion of the school day, but deaf-blind children are following a different educational trajectory than other general education students. Goals such as independent living and social development are often major goals which deaf-blind children pursue while in school. More intensive, individualized instruction is often a reason cited for why deaf-blind students to stay in general education setting. Also, their IEP goals focus on achieving adult independence and community presence. Further, they participate in functional curriuculum that includes direct instruction on targets such as independence, vocational skills and self-determination.^[36]

[edit] Transition

Transition from home to the community and school must be planned for the child who is deaf-blind. Because of the diversity of needs, such services for a child who is deaf-blind can rarely be provided by a single person or agency. The child’s own goals, directions, interests, and abilities must guide the planning at every step of the way. Educators and parents can assist in ensuring that the child with deaf-blindness has a voice in planning for their future. Low-incidence disabilites should have some transition components in their IEP’s. Further, many of these students will continue to receive treatment well after they are out of high school. Aside from Helen Keller, Stephen Hawking is one of the most famous persons with low-incidence disability personalites in the world. Stephen Hawking is a professor of mathematics at the University of Cambridge currently.

It is critical for guidance counselors and teachers to not limit or discourage deaf-blind students from achieveing their dreams. Most universities and colleges today have made accomodations for the handicapped. They provide tutors, classes in study skills, interpreters, and acesss to online tests.^[37] Unfortunately, many deaf-blind students are aiming for different life goals. Finding a way to participate in the community by living as independantly as possible is an example of one of these life goals. Employment, community participation, recreation and leisure, continuing education or services from state agencies, independent living, self-determination and quality of life are goals that deaf-blind people seek. However, due to the variances in their disabilities and the vast differences that exist among deaf-blind cases, the goals and plans that are strived for will be on a case by case basis.

[edit] Prominent deafblind people

• Francisco Goya (1746–1828): a Spanish painter, deaf and blind by the time of his death.^[38]
• Victorine Morriseau (1789–1832): First deafblind person to be educated in Paris
• James Mitchell (1795–1869): congenitally deafblind son of Scottish minister
• Sanzan Tani (1802–1867): Japanese teacher who became deaf in childhood and blind later in life, communicating with students by touch.
• Hieronymus Lorm (1821–1902): inventor and novelist
• Laura Bridgman (1829–1889): first deafblind child to be successfully educated in the US
• Mary Bradley (?–1866): first deafblind child to be successfully educated in the UK
• Joseph Hague: second deafblind child to be successfully educated in the UK
• Yvonne Pitrois (1880–1937): French biographer
• Helen Keller (1880–1968): author, activist, and lecturer, first deafblind person to receive a Bachelor of Arts degree
• Alice Betteridge (1901–1966): first deafblind Australian to be educated. Teacher, traveller, writer.
• Jack Clemo (1916–1994): British poet who became deafblind as an adult
• Richard Kinney (1924–1979): educator, lecturer, and poet; third deaf-blind person to graduate from an American university; president of the Hadley School for the Blind from 1975 to 1979.^[39]
• Robert Smithdas (1925— ): the first DeafBlind person in the US to receive a master's degree.
• Theresa Poh Lin Chan (1945?— ): Singaporean teacher and writer

[edit] See also

• Tadoma
• Usher syndrome
• White cane (used by blind people to assist them in walking)
• Congenital rubella syndrome
• Tommy (rock opera)

[edit] References

1. ^ Miller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
2. ^ National Consortium on Deaf-Blindness (2008a). National child count. Retrieved June 6, 2008, http://www.nationaldb.org/documents/products/2007-Census-Tables.pdf
3. ^ Miles, B. (2005), Overview on deaf-blindness. Retrieved August 29, 2005, from www.dblink.org/lib/overview.htm
4. ^ Miller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
5. ^ National Consortium on Deaf-Blindness (2008a). National child count. Retrieved June 6, 2008, http://www.nationaldb.org/documents/products/2007-Census-Tables.pdf
6. ^ Miles, B. (2005), Overview on deaf-blindness. Retrieved August 29, 2005, from www.dblink.org/lib/overview.htm
7. ^ U.S. Department of Education (2006, August 14). 34 CFR Parts 300 and 301, Assistance to States for the Education of Children with Disabilities and Preschool Grants for Children with disabilities; Final rule. Federal Register, Washington, D.C.
8. ^ National Consortium on Deaf-Blindness (2007a, November). Children who are deaf-blind: Practice perspectives Highlighting information on deaf-blindness. Http://nationaldb.org/documents/products/population.pdf
9. ^ Brown, D., & Bates, E. (2005). A personal view of changes in the deaf-blind population, philosophy and needs. Deaf-Blind Perspectives, 12, 1-5.
10. ^ Killoran, J. (2007). The national deaf-blind child count: 1998-2005 in review. Monmouth, OR, and Sands Point, NY: National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind.
11. ^ National Consortium on Deaf-Blindness (2007a, November). Children who are deaf-blind: Practice perspectives Highlighting information on deaf-blindness. Http://nationaldb.org/documents/products/population.pdf
12. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
13. ^ National Consortium on Deaf-Blindness (2007c). Primary etiologies of deaf-blindness- Frequency. Retrieved June 10, 2008 from www.nationaldb.org/ISSelectedTopics.php?topicID=990topicCatID=24
14. ^ Heller, K.W. & Kennedy, C. (1994). Etiologies and characteristics of deaf-blindness. Monmouth, OR: Teaching Research Publications.
15. ^ National Consortium on Deaf-Blindness (2007c). Primary etiologies of deaf-blindness- Frequency. Retrieved June 10, 2008 from www.nationaldb.org/ISSelectedTopics.php?topicID=990topicCatID=24
16. ^ Keatz, B.J., & Lentz, J. (2008). Usher syndrome Type 1. Gene reviews, NCBI Bookshelf. Retrieved June 10, 2008, from www.ncbi.nim.nih.gov/bookshelf/br.fcgi?book=gene&part=usher1
17. ^ Melancon, F. (2000). A group for students with Usher syndrome in South Louisiana. Deaf-Blind Perspectives, 8, 1-3.
18. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
19. ^ Miles, B. (2005), Overview on deaf-blindness. Retrieved August 29, 2005, from www.dblink.org/lib/overview.htm
20. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
21. ^ Muller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
22. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
23. ^ National Consortium on Deaf-Blindness (2008a). National child count. Retrieved June 6, 2008, http://www.nationaldb.org/documents/products/2007-Census-Tables.pdf
24. ^ Killoran, J. (2007). The national deaf-blind child count: 1998-2005 in review. Monmouth, OR, and Sands Point, NY: National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind.
25. ^ Muller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
26. ^ National Consortium on Deaf-Blindness (2008a). National child count. Retrieved June 6, 2008, http://www.nationaldb.org/documents/products/2007-Census-Tables.pdf
27. ^ Killoran, J. (2007). The national deaf-blind child count: 1998-2005 in review. Monmouth, OR, and Sands Point, NY: National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind.
28. ^ Muller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
29. ^ Muller, E. (2006). Deaf-blind child counts: Issues and challenges. In Forum: Brief Policy Analysis. Alexandria, VA: National Association of State Directors of Special Education, Project Forum.
30. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
31. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
32. ^ U.S. Department of Education. (2000). Characteristics of children and families entering early intervention. In Twenty-second annual report to Congress on the implementation of the individuals with Disabilities Education Act. (pp. IV-1 through IV-13) Washington, DC: U.S. Government Printing Office.
33. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
34. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
35. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
36. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
37. ^ Smith, D., & Tyler, N. (2007). Introduction to Special Education: Making a Difference. New Jersey: Merrill.
38. ^ http://www.reviewpainting.com/Francisco-Goya.htm
39. ^ "Notes and News", Bulletin of Prosthetics Research, Fall 1979.

[edit] External links

• Deafblind UK supporting deafblind people in the UK
• The Helen Keller National Center for Deaf-Blind Youths and Adults
• Sense Scotland - Scottish charity for Deafblindness
• [1] - The Helen Keller International Award, art competition.
• Sense - UK charity for Deafblindness
• Sense International (India), an NGO working with deafblind people
• The Center for Deaf-Blind Persons
• Frequently Asked Questions About DeafBlindness - Detailed info about what it's like to be deafblind (communication, mobility, cultural identity, quality of life, etc.)
• World Federation of the Deafblind
• American Association of the Deaf-Blind
• Sense International (India) - working with Deafblind people in India
• Canadian Deafblind and Rubella Association
• New York Deaf-Blind Collaborative - working with Deaf-blind youth, families, and service providers in New York

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