The National Information Clearinghouse On Children Who Are Deaf-Blind Helen Keller National Center Hilton/Perkins Program Perkins School for the Blind Teaching Research Institute

Revised October 2008 Overview on Deaf-Blindness By Barbara Miles, M.Ed.

What Is Deaf-Blindness? Who Is Deaf-Blind, and What are the Causes of Deaf-Blindness? It may seem that deaf-blindness refers to a total in­ ability to see or hear. However, in reality deaf-blindness is a condition in which the combi­ As far as it has been possible to count them, there nation of hearing and visual losses in children are over 10,000 children (ages birth to 22 years) in cause "such severe communication and other de­ the United States who have been classified as velopmental and educational needs that they can­ deaf-blind (NCDB, 2008). It has been estimated not be accommodated in special education that the adult deaf-blind population numbers 35­ programs solely for children with deafness or chil­ 40,000 (Watson, 1993). The causes of deaf- dren with blindness" ( 34 CFR 300.8 ( c ) ( 2 ), 2006) blindness are many. Below is a list of many of the or multiple disabilities. Children who are called possible etiologies of deaf-blindness. deaf-blind are singled out educationally because Major Causes of Deaf-Blindness impairments of sight and hearing require thought­ ful and unique educational approaches in order to ensure that children with this disability have the Syndromes opportunity to reach their full potential. ♦ Down ♦ Trisomy 13 A person who is deaf-blind has a unique experi­ ♦ Usher ence of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is Multiple Congenital Anomalies deaf-blind, the world is initially much narrower. If ♦ CHARGE Association ♦ Fetal alcohol syn­ the child is profoundly deaf and totally blind, his drome or her experience of the world extends only as far as the fingertips can reach. Such children are effec­ ♦ Hydrocephaly ♦ Maternal drug abuse tively alone if no one is touching them. Their con­ ♦ Microcephaly cepts of the world depend upon what or whom they have had the opportunity to physically con­ tact. Prematurity If a child who is deaf-blind has some usable vision Congenital Prenatal Dysfunction and/or hearing, as many do, her or his world will ♦ ♦ be enlarged. Many children called deaf-blind have AIDS Herpes enough vision to be able to move about in their en­ ♦ Rubella ♦ Syphilis vironments, recognize familiar people, see sign language at close distances, and per haps read large ♦ Toxoplasmosis print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or de­ Post-natal Causes velop speech themselves. The range of sensory im­ ♦ Asphyxia ♦ Encephalitis pairments included in the term "deaf-blindness" is great. ♦ Head injury/trauma ♦ Meningitis ♦ Stroke Adapted from Etiologies and Characteristics of Deaf- Blindness Heller & Kennedy,(1994), p. viii, Table 1. TTY (800) 854-7013 DB-LINK Voice (800) 438-9376

Some people are deaf-blind from birth. Others may A person who is deaf-blind also faces, further, the be born deaf or hard-of-hearing and become blind challenge of learning to move about in the world as or visually impaired later in life; or the reverse may freely and independently as possible. Adult indi­ be the case. viduals also must eventually find adult living and work situations that allow them to use their talents Still others may be adventitiously deaf-blind — that and abilities in the best way possible. Many adults is, they are born with both sight and hearing but who are deaf-blind lead independent or semi­ lose some or all of these senses as a result of acci­ independent lives and have productive work and dent or illness. enjoyable social lives. The achievement of such Deaf-blindness is often accompanied by additional success depends in large part upon the education disabilities. Causes such as maternal rubella can they have received since childhood, and particu­ also affect the heart and the brain. Some genetic larly upon the communication with others that syndromes or brain injuries that cause deaf- they have been able to develop. blindness may also cause cognitive disabilities and/or physical disabilities. What are the Particular What are the Challenges Facing Challenges Facing the Family, a Person who is Deaf-Blind? Teachers and Caregivers of a Person who is Deaf-Blind? A person who is deaf-blind must somehow make sense of the world using the limited information Communication available to him or her. If the person’s sensory dis­ abilities are great, and if people in the environment The disability of deaf-blindness presents unique have not made an effort to order the world for him challenges to families, teachers, and caregivers, or her in a way that makes it easier to understand, who must make sure that the person who is deaf- this challenge may be overwhelming. Behavioral blind has access to the world beyond the limited and emotional difficulties often accompany deaf- reach of his or her eyes, ears, and fingertips. The blindness and are the natural outcomes of the people in the environment of children or adults child’s or adult’s inability to understand and com­ who are deaf-blind must seek to include municate. them — moment-by-moment — in the flow of life and in the physical environments that surround People who can see and hear often take for granted them. If they do not, the child will be isolated and the information that those senses provide. Events will not have the opportunity to grow and to learn. such as the approach of another person, an upcom­ If they do, the child will be afforded the opportu­ ing meal, the decision to go out, a change in routine nity to develop to his or her fullest potential. are all signaled by sights and sounds that allow a person to prepare for them. The child or adult who The most important challenge for parents, caregiv­ misses these cues because of limited sight and/or ers, and teachers is to communicate meaningfully hearing may come to experience the world as an with the child who is deaf-blind. Continual good unpredictable, and possibly threatening, place. To communication will help foster his or her healthy a great extent, persons who are deaf-blind must de­ development. Communication involves much pend upon the good will and sensitivity of those more than mere language. Good communication around them to make their world safe and under­ can best be thought of as conversation. Conversa­ standable. tions employ body language and gestures, as well as both signed and spoken words. A conversation The challenge of learning to communicate is per­ with a child who is deaf-blind can begin with a haps the greatest one that children who are deaf- partner who simply notices what the child is pay­ blind face. It is also the greatest opportunity, since ing attention to at the moment and finds a way to communication and language hold the power to let the child know that his or her in terest is shared. make their thoughts, needs, and desires known. The ability to use words can also open up worlds This shared interest, once established, can become beyond the reach of their fingertips through the a topic around which a conversation can be built. use of interpreters, books, and an ever-increasing Mutual conversational topics are typically estab­ array of electronic communication devices. In or­ lished between a parent and a sighted or hearing der to learn language, children who are deaf- blind child by making eye contact and by gestures such must depend upon others to make language acces­ as pointing or nodding, or by exchanges of sounds sible to them. Given that accessibility, children and facial expressions. Lacking significant who are deaf-blind face the challenges of engaging amounts of sight and hearing, children who are in interactions to the best of their abilities and of deaf-blind will often need touch in order for them availing themselves of the language opportunities to be sure that their partner shares their focus of at­ provided for them. tention. The parent or teacher may, for example, touch an interesting object along with the child in a nondirective way. Or, the mother may imitate a

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child’s movements, allowing the child tactual ac­ ♦ Signed English ♦ Pidgin Signed English cess to that imitation, if necessary. (This is the tac­ tual equivalent of the actions of a mother who ♦ braille writing and ♦ Tadoma method of instinctively imitates her child’s babbling sounds.) reading speech reading Establishing a mutual interest like this will open ♦ American Sign ♦ large print writing up the possibility for conversational interaction. Language and reading Teachers, parents, siblings, and peers can continue conversations with children who are deaf-blind by ♦ lip-reading speech learning to pause after each turn in the interaction Along with nonverbal and verbal conversations, a to allow time for response. These children fre­ child who is deaf-blind needs a reliable routine of quently have very slow response times. Respecting meaningful activities, and some way or ways that the child’s own timing is crucial to establishing this routine can be communicated to her or him. successful interactions. Pausing long enough to al­ Touch cues, gestures, and use of object symbols are low the child to take another turn in the interac­ some typical ways in which to let a child who is tion, then responding to that turn, pausing again, deaf-blind know what is about to happen to her or and so on — this back-and-forth exchange becomes him. Each time before the child is picked up, for ex­ a conversation. Such conversations, repeated con­ ample, the caregiver may gently lift his or her arms sistently, build relationships and become the even­ a bit, and then pause, giving the child time to ready tual basis for language learning. herself or himself for being handled. Such consis­ As the child who is deaf-blind becomes comfort­ tency will help the child to feel secure and to begin able interacting nonverbally with others, she or he to make the world predictable, thus allowing the becomes ready to receive some form of symbolic child to develop expectations. Children and adults communication as part of those interactions. Often who are deaf-blind and are able to use symbolic it is helpful to accompany the introduction of communication may also be more reliant on pre­ words (spoken or signed) with the use of simple dictable routine than people who are sighted and gestures and/or objects which serve as symbols or hearing. Predictable routine may help to ease the representations for activities. Doing so may help a anxiety which is often caused by the lack of sen­ child develop the un der standing that one thing can sory information. stand for another, and will also enable him or her to anticipate events. Orientation and Mobility Think of the many thousands of words and sen­ In addition, the child who is deaf-blind will need tences that most children hear before they speak help learning to move about in the world. Without their own first words. A child who is deaf-blind vision, or with reduced vision, he or she will not needs comparable language stimulation, adjusted only have difficulty navigating, but may also lack to his or her ability to receive and make sense of it. the motivation to move outward in the first place. Parents, caregivers, and teachers face the challenge Helping a young child who is deaf-blind learn to of providing an environment rich in language that move may begin with thoughtful attention to the is meaningful and accessible to the child who is physical space around him or her (crib or other deaf-blind. Only with such a rich language envi­ space) so that whatever movements the child in­ ronment will the child have the opportunity to ac­ stinctively makes are rewarded with interesting quire language herself or himself. Those around stimulation that motivates further movement. Ori­ the child can create a rich language environment entation and mobility specialists can help parents by continually commenting on the child’s own ex­ and teachers to construct safe and motivating perience using sign language, speech, or whatever spaces for the young child who is deaf-blind. In symbol system is accessible to the child. These many instances children who are deaf-blind may comments are best made during conversational in­ also have additional physical and health problems teractions. A teacher or a parent may, for example, that limit their ability to move about. Parents and use gesture or sign language to name the object teachers may need to include physical and occupa­ that he or she and the child are both touching, or tional therapists, vision teachers, health profes­ name the movement that they share. This naming sionals, and orientation and mobility specialists on of objects and actions, done many, many times, the team to plan accessible and motivating spaces may begin to give the child who is deaf-blind a for these children. Older children or adults who similar opportunity afforded to the hearing have lost vision can also use help from trained spe­ child — that of making meaningful connections be­ cialists in order to achieve as much confidence and tween words and the things for which they stand. independence as possible in moving about in their world. Principal communication systems for persons who are deaf-blind are these: Individualized Education ♦ touch cues ♦ gestures Education for a child or youth with deaf-blindness needs to be highly individualized; the limited ♦ object symbols ♦ picture symbols channels available for learning necessitate organ­ ♦ sign language ♦ fingerspelling izing a program for each child that will address the child’s unique ways of learning and his or her own

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interests. Assessment is crucial at every step of the college scholarship or success in basketball or elec­ way. Sensory deficits can easily mislead even ex­ tion to class office. perienced educators into underestimating (or oc­ casionally overestimating) intelligence and Parents, then, may need to shift expectations and constructing inappropriate programs. perceptions in significant ways. They also need to do the natural grieving that accompanies the birth Helen Keller said, "Blindness separates a person of a child who is disabled. Teachers and caregivers from things, but deafness separates him from peo­ must also make these perceptual shifts. Parents’ ple.” This potential isolation is one important rea­ groups and resources for teachers can provide son why it is necessary to engage the services of much-needed support for those who live and work persons familiar with the combination of both with children and adults who are deaf-blind. Such blindness and deafness when planning an educa­ supports will help foster the mutually rewarding tional pro gram for a child who is deaf-blind. Doing inclusion of children who are deaf-blind into their so will help a child or youth with these disabilities families and communities. (See section below for receive an education which maximizes her or his resources.) potential for learning and for meaningful contact with her or his environment. The earlier these serv­ ices can be obtained, the better for the child. Summary Transition Though deaf-blindness presents many unique When a person who is deaf-blind nears the end of challenges to both those who have visual and hear­ his or her school-based education, transition and ing impairments and to their caregivers and rehabilitation help will be required to assist in friends, these challenges are by no means insur­ planning so that as an adult the individual can find mountable. Many persons who are deaf-blind suitable work and living situations. Because of the have achieved a quality of life that is excellent. The diversity of needs, such services for a person who persons who are deaf-blind who have high quality is deaf-blind can rarely be provided by a single lives have several things in common. person or agency; careful and respectful teamwork is required among specialists and agencies con­ First, they have each, in their own way, come to ac­ cerned with such things as housing, voca tional and cept themselves as individuals who have unique ex­ rehabilitation needs, deafness, blindness, orienta­ periences of the world, and valuable gifts to share. tion and mobility, medical needs, and mental This fundamental acceptance of self can occur re­ health. gardless of the severity of the particular sensory losses or other challenges that a person has. Second, The adult who is deaf-blind must be central to the they have had educational experiences which have transition planning. The individual’s own goals, helped them maximize their abilities to communi­ directions, interests, and abilities must guide the cate and to function productively. Finally, these planning at every step of the way. Skilled inter­ happy, involved persons who are deaf-blind live in preters, family members and friends who know families, communities, or social groups that have an the person well can help the adult who is deaf- attitude of welcoming acceptance. They have blind have the most important voice in planning friends, relatives, and co-workers who value their his or her own future. presence as individuals with significant contribu­ tions to make to the world around them. For these Inclusion in Family persons with limited sight and hearing, and for those Clearly, the challenges for parents, teachers and near them, deaf-blindness fosters opportunities for caregivers of children who are deaf-blind are learning and mutual enrichment. many. Not least among them is the challenge of in­ cluding the child in the flow of family and commu­ References nity life. Since such a child does not necessarily The National Consortium on Deaf-Blindness (2008). 2007 respond to care in the ways we might expect, par­ National child count of children and youth who are ents will be particularly challenged in their efforts deaf-blind. Monmouth: Teaching Research Division. to include her or him. The mother or father of an in­ Wolff Heller, K. & Kennedy, C. (1994). Etiologies and fant who can see is usually rewarded with smiles characteristics of deaf-blindness. Monmouth: Teaching and lively eye contact from the child. The parent of Research Publications. a child who is deaf-blind must look for more subtle Watson, D., & Taff-Watson, M. (Eds.), (1993). Second edi­ rewards: small hand or body movements, for in­ tion. A model service delivery system for persons who stance, may be the child’s way of expressing pleas­ are deaf-blind. Arkansas: University of Arkansas ure or connec tion. Parents may also need to change their perceptions regarding typical developmental milestones. They can learn, as many have, to re­ Barbara Miles is a communication specialist/consultant and joice as fully in the ability of their child who is teacher, experienced with all ages and levels of persons who are deaf-blind to sign a new word, or to feed herself, or deaf-blind. She has taught regional, national and in ternational sem­ to return a greeting as they do over another child’s inars on communica tion issues for children who are deaf-blind. Her articles have been published in the Journal of Vision Impairments and Blindness, Deafblind Education, and regional newsletters.

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What Help is Available for Families, Caregivers and Teachers of Children and Adults who are Deaf-Blind?

American Association of the Deaf-Blind (AADB) NFADB is a national network of families who fo­ cus on issues surrounding deaf-blindness. NFADB 8630 Fenton Street, Suite 121 advocates for all persons who are deaf-blind, sup­ Silver Spring, MD 20910-3803 ports national policy to benefit people who are TTY (301) 495-4402, Voice (301) 495-4403 deaf-blind, and encourages the founding and Fax (301) 588-8705 strengthening of family organizations in each [email protected] state. http://www.aadb.org AADB is a national consumer advocacy organiza­ tion that promotes better opportunities and ser­ Training and Educational Resources Program vices for deaf-blind people. Perkins School for the Blind 175 North Beacon Street Watertown, MA 02472 Helen Keller National Center for Deaf-Blind Phone (617) 972-7519, Fax (617) 923-8076 Youths and Adults (HKNC) [email protected] 141 Middle Neck Road http://www.perkins.org/ Sands Point, NY 11050-1299 The Training and Educational Resources Program Phone (800) 255-0411 ext. 326, Fax (516) 944-7302 provides information, training, and educational TTY (516) 944-8900 ext. 326 resources to families and professionals throughout [email protected] the nation. Emphasis is on families and profession­ http://www.hknc.org als involved with children and youth who are HKNC is a national program that provides evalua­ blind, visually impaired, and deafblind, including tion, short-term comprehensive vocational reha­ those with additional disabilities. bilitation training, work experience training and assistance to deaf-blind clients for job and residen­ tial placements. U.S. Department Of Education, Office of Special Education Federal Deaf-Blind Programs (326C Grants) National Consortium on Deaf-Blindness (NCDB) Office of Special Education and Rehabilitation Ser­ Teaching Research Institute vices 345 N. Monmouth Ave. Research to Practice Division Monmouth, OR 97361 Elementary and Middle School Phone (800) 438-9376, Fax (503) 838-8150 550 12th Street, SW - PCP-4086 TTY (800) 854-7013 Washington, DC 20202-2600 [email protected] Attn: Anne Smith, Ed.D., Project Officer http://www.nationaldb.org Phone (202) 245-7529, Fax (202) 245-7617 NCDB works collaboratively with families, fed­ [email protected] eral, state and local agencies to provide technical http://www.ed.gov/about/of assistance, information and personnel training. fices/list/osers/osep NCDB brings together the resources of three agen­ The Office of Special Education Programs supports cies with long histories of expertise in the field of projects to improve and enhance services that are deaf-blindness and is home to DB-LINK. provided by state and local education agencies to children and youth who are deaf-blind. This is done through a program of grant awards that ad­ National Family Association for Deaf-Blind dress technical assistance, research, development, (NFADB) pre-service and in-service training, and parental involvement activities. 141 Middle Neck Road Sands Point, NY 11050 Phone (800) 255-0411, Fax (516) 883-9060 TTY (800) 255-0411 [email protected] http://www.nfadb.org

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Please feel free to copy this publication with the appropriate citations. For addi­ tional copies or copies in alternative for­ mats, contact DB-LINK at NCDB.

This article is available on the web at http://www.nationaldb.org/NCDBProducts.php

For additional resources on all aspects of deaf-blindness, see the Selected Topics section of the NCDB Website: http://www.nationaldb.org/ISSelectedTopics.php

NCDB 345 N. Monmouth Ave Monmouth, OR 97361 Voice (800) 438-9376 TTY: (800) 854-7013 Fax: (503) 838-8150 [email protected] http:/nationaldb.org

Funded through award #H326T060002 by the U.S. Department of Educa­ tion, OSERS, OSEP. The opinions and policies expressed by this publication do not necessarily reflect those of The Teaching Research Institute, or the U.S. Department of Education.

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