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

                                                                                                                   Revised January 2005

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

           What Is Deaf-Blindness?                                             Who Is Deaf-Blind, and What are
   It may seem that deaf-blindness refers to a total in-
                                                                               the Causes of Deaf-Blindness?
   a b i l i t y t o s e e o r h e a r. H o w e ve r, i n r e a l i t y
   deaf-blindness is a condition in which the combi-                          As far as it has been possible to count them, there
   na tion of hear ing 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 clas si fied as
   velopmental and educational needs that they can-                           deaf-blind (NTAC, 2004). It has been estimated
   not be ac com mo dated in spe cial ed u ca tion                            that the adult deaf-blind pop u la tion num bers
   programs solely for children with deafness or chil-                        35-40,000 (Watson, 1993). The causes of deaf-blind-
   dren with blindness" ( 34 CFR 300.7 ( c ) ( 2 ), 1999)                     ness are many. Below is a list of many of the possi-
   or multiple disabilities. Children who are called                          ble etiologies of deaf-blindness.
   deaf-blind are singled out educationally because
   impairments of sight and hearing require thought-                          Major Causes of Deaf-Blindness
   ful and unique educational approaches in order to
   ensure that children with this disability have the                         Syndromes
   opportunity to reach their full potential.                                 t Down                         t Trisomy 13
   A person who is deaf-blind has a unique experi-                            t 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                       t CHARGE Association t F e t a l a l c o h o l s y n-
   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-                      t Hydrocephaly                 t Maternal drug abuse
   tively alone if no one is touching them. Their con-                        t 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                          t AIDS                         t Herpes
   be enlarged. Many children called deaf-blind have
   enough vision to be able to move about in their en-                        t Rubella                      t Syphilis
   vironments, recognize familiar people, see sign
                                                                              t Toxoplasmosis
   language at close distances, and perhaps read large
   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-                          t Asphyxia                     t Encephalitis
   pairments included in the term “deaf-blindness” is
   great.                                                                     t Head injury/trauma           t Meningitis
                                                                              t Stroke
                                                                              Adapted from Eti ol o gies and Char ac ter is tics 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-inde-
   lose some or all of these senses as a result of acci-           pendent lives and have productive work and en-
   dent or illness.                                                joyable so cial lives. The achieve ment 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 communica tion with others that
   syndromes or brain injuries that cause deaf-blind-              they have been able to develop.
   ness 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 per son who is
   this challenge may be overwhelming. Behavioral                  deaf-blind has access to the world beyond the lim-
   and emo tional dif fi cul ties of ten ac com pany               ited reach of his or her eyes, ears, and fingertips.
   deaf-blindness and are the natural outcomes of the              The peo ple in the en vi ron ment of chil dren or
   child’s or adult’s inability to understand and com-             adults who are deaf-blind must seek to include
   municate.                                                       them—mo ment-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, care-
   misses these cues because of limited sight and/or               givers, and teachers is to communicate meaning-
   hearing may come to experience the world as an                  fully with the child who is deaf-blind. Continual
   unpredictable, and possibly threatening, place. To              good communication will help foster his or her
   a great extent, persons who are deaf-blind must de-             healthy development. Communication involves
   pend upon the good will and sensitivity of those                much more than mere language. Good communi-
   around them to make their world safe and under-                 cation can best be thought of as conversation. Con-
   standable.                                                      versations employ body language and gestures, as
                                                                   well as both signed and spoken words. A conversa-
   The challenge of learning to communicate is per-                tion with a child who is deaf-blind can begin with a
   haps the great est one that chil dren who are                   partner who simply notices what the child is pay-
   deaf-blind face. It is also the greatest opportunity,           ing attention to at the moment and finds a way to
   since com mu ni ca tion and lan guage hold the                  let the child know that his or her interest is shared.
   power to make their thoughts, needs, and desires
   known. The ability to use words can also open up                This shared interest, once established, can become
   worlds be yond the reach of their fin ger tips                  a topic around which a conversation can be built.
   through the use of in ter pret ers, books, and an               Mutual conversational topics are typically estab-
   ever-increasing array of electronic communication               lished between a parent and a sighted or hearing
   devices. In order to learn language, children who               child by making eye contact and by gestures such
   are deaf- blind must depend upon others to make                 as pointing or nodding, or by exchanges of sounds
   language accessible to them. Given that accessibil-             and fa cial ex pres sions. Lack ing sig nif i cant
   ity, children who are deaf-blind face the challenges            amounts of sight and hearing, children who are
   of engaging in interactions to the best of their abili-         deaf-blind will often need touch in order for them
   ties and of availing themselves of the language op-             to be sure that their partner shares their focus of at-
   portunities 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

Page 2                                                                                           Overview on Deaf-Blindness
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    child’s movements, allowing the child tactual ac-               t Signed English           t Pidgin Signed English
    cess to that imitation, if necessary. (This is the tac-
    tual equiva lent of the actions of a mother who                 t braille writing and      t Tadoma method of
    instinctively imitates her child’s babbling sounds.)               reading                    speech reading
    Establishing a mutual interest like this will open              t American Sign            t 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               t lip-reading speech
    learning to pause after each turn in the interaction            Along with nonverbal and verbal conversations, a
    to al low time for re sponse. These chil dren 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 help ful to ac com pany the in tro duc tion 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 understanding 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 teach ers to con struct safe and mo ti vat ing
    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
    sim i lar op por tu nity af forded to the hear ing              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
    Principal communication systems for persons who
    are deaf-blind are these:                                       Individualized Education
    t touch cues                t gestures                          Education for a child or youth with deaf-blindness
                                                                    needs to be highly in di vid u al ized; the lim ited
    t object symbols            t picture symbols
                                                                    channels available for learning necessitate organiz-
    t sign language             t fingerspelling                    ing a program for each child that will address the
                                                                    child’s unique ways of learning and his or her own

Overview on Deaf-Blindness                                                                                          Page 3
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   interests. Assessment is crucial at every step of the                            other child’s col lege schol ar ship or suc cess in
   way. Sensory deficits can easily mislead even expe-                              basketball or election to class office.
   rienced educators into underestimating (or occa-
   s i o n a l l y o ve r e s t i m a t i n g) i n t e l l i g e n c e a n d        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 re sources for teach ers can provide
   son why it is necessary to engage the services of                                much-needed support for those who live and work
   per sons fa mil iar with the com bi na tion 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 program 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 ser-
   vices can be obtained, the better for the child.                                                          Summary
                                                                                    Though deaf-blind ness pres ents 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 im pair ments and to their care givers and
   re ha bil i ta tion help will be re quired to as sist in                         friends, these challenges are by no means insur-
   planning so that as an adult the individual can find                             mountable. Many per sons 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, vocational 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 mo bil ity, med i cal needs, and men tal                                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 func tion productively. Finally, these
   planning at every step of the way. Skilled interpret-                            happy, involved persons who are deaf-blind live in
   ers, family members and friends who know the                                     families, communities, or social groups that have an
   person well can help the adult who is deaf-blind                                 attitude of welcoming acceptance. They have friends,
   have the most important voice in planning his or                                 relatives, and co-workers who value their presence
   her own future.                                                                  as individuals with significant contributions to make
                                                                                    to the world around them. For these persons with
   Inclusion in Family                                                              limited sight and hearing, and for those near them,
   Clearly, the challenges for parents, teachers and                                deaf-blindness fosters opportunities for learning and
   care givers of chil dren who are deaf-blind are                                  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 Technical Assistance Consortium for Chil-
   respond to care in the ways we might expect, par-                                 dren and Young Adults Who Are Deaf-Blind (2004). An-
   ents will be particularly challenged in their efforts                             nual deaf-blind census. Monmouth: Teaching Research
   to include her or him. The mother or father of an in-                             Division.
   fant who can see is usually rewarded with smiles                                 Wolff Heller, K. & Kennedy, C. (1994). Etiologies and
   and lively eye contact from the child. The parent of                              characteristics of deaf-blindness. Monmouth: Teaching
   a child who is deaf-blind must look for more subtle                               Research Publications.
   rewards: small hand or body movements, for in-                                   Watson, D., & Taff-Watson, M. (Eds.), (1993). Second edi-
   stance, may be the child’s way of expressing plea-                                tion. A model service delivery system for persons who
   sure or con nec tion. Par ents may also need to                                   are deaf-blind. Arkansas: University of Arkansas
   change their perceptions regarding typical devel-
   op men tal mile stones. They can learn, as many                                  Barbara Miles is a communication specialist/consultant and
   have, to rejoice as fully in the ability of their child                          teacher, experienced with all ages and levels of persons who are
   who is deaf-blind to sign a new word, or to feed                                 deaf-blind. She has taught regional, national and international semi-
   herself, or to return a greeting as they do over an-                             nars on communication 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.

Page 4                                                                                                                   Overview on Deaf-Blindness
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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]                National Family Association For Deaf-Blind
    814 Thayer Ave, Ste 302
    Silver Spring, MD 20910-4500                                  141 Middle Neck Road
    Voice: (301) 495-4403, TTY: (301) 495-4402                    Sands Point, NY 11050,                            Phone: (800) 255-0411 x275 Fax: (516) 883-9060
                                                                  TTY: (800) 255-0411
    AADB is a national consumer advocacy organiza-      
    tion that promotes better opportunities and ser-    
    vices for deaf-blind people.
                                                                  NFADB is a national network of families who focus
 DB-LINK, The National Information                                on issues surrounding deaf-blindness. NFADB ad-
 Clearinghouse On Children Who Are Deaf-Blind                     vocates for all persons who are deaf-blind, sup-
    Teaching Research Institute                                   ports national policy to benefit people who are
    345 N. Monmouth Ave.                                          deaf-blind, and en cour ages the found ing and
    Monmouth, OR 97361                                            strength en ing of fam ily or ga ni za tions in each
    Phone: (800) 438-9376 Fax: (503) 838-8150                     state.
    TTY: (800) 854-7013                                       National Technical Assistance Consortium for                                         Children and Young Adults Who Are Deaf-Blind                                     [NTAC]
    DB-LINK is a federally funded information and re-
                                                                  Teaching Research Institute
    ferral service that collects, develops, and distrib-
                                                                  Western Oregon University
    utes information to help improve the education
                                                                  345 N. Monmouth Ave.
    and lives of children and youth who are deaf-blind.
                                                                  Monmouth, OR 97361
 Helen Keller National Center For Deaf-Blind                      Phone: (503) 838-8808 Fax: (503) 838-8150
 Youths and Adults [HKNC]                                         TTY: (503) 838-9623
    141 Middle Neck Road
    Sands Point, NY 11050-1299                                    NTAC is a consortium for the provision of techni-
    Phone: (800) 255-0411 ext. 326 Fax: (516) 944-7302            cal assistance to families and agencies serving chil-
    TTY: (516) 944-8900 ext. 326                                  dren and young adults who are deaf-blind. The                                           primary mission of NTAC is to assist states in im-
                                                                  prov ing the qual ity of ser vices for in di vid u als
    HKNC is a national program that provides evalua-              (birth to age 22) who are deaf-blind.
    tion, short-term comprehensive vocational rehabil-
    i ta tion train ing, work ex pe ri ence train ing and     U.S. Department Of Education
    assistance to deaf-blind clients for job and residen-     Office Of Special Education Programs
    tial placements.                                          Projects For Children Who Are Deaf-Blind
 Hilton/Perkins Program                                           Charles Freeman
 Perkins School for the Blind                                     400 Maryland Ave
                                                                  Washington, DC 20202-2550
    175 North Beacon Street                                       Phone: (202) 245-7347 Fax: (202) 205-8971
    Watertown, MA 02472                                           TTY: (202) 205-9172 -D8170
    Phone: (617) 972-7220 Fax: (617) 923-8076                                    
                                                                  The Office of Special Education Programs supports
    Hilton/Perkins pro gram pro vides con sul ta tion,            projects to improve and enhance services that are
    train ing and tech ni cal as sis tance to pro grams           provided by state and local education agencies to
    throughout the nation and in developing coun-                 children and youth who are deaf-blind. This is
    tries. Emphasis is on program development for                 done through a program of grant awards that ad-
    multi-handicapped blind and deaf-blind infants,               dress technical assistance, research, development,
    toddlers and school-aged children.                            pre-service and in-service training, and parental
                                                                  involvement activities.

Overview on Deaf-Blindness                                                                                        Page 5
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                     Please feel free to copy this pub li ca -
                     tion with the ap pro pri ate ci ta tions.
                     For ad di tional cop ies or cop ies in al -
                     ter na tive for mats, con tact DB-LINK.

                                                 For ad ditional re sources on all as pects of
                                                 deaf-blindness, see the Selected Topics sec-
                                                 t i o n o f t h e D B - L I N K We b s i t e :

                                                            +                (               :
                                                                345 N. Mon mouth Ave
                                                                Mon mouth, OR 97361
                                                                Voice (800) 438- 9376
                                                                TTY: (800) 854- 7013
                                                                Fax:   (503) 838-8150

                                            DB-LINK (The National Information Clearinghouse on Children Who Are
                                            Deaf-Blind) is funded through Cooperative Agreement No. H326U040002 by the
                                            U.S. Department of Education, OSERS, Special Education Programs. The opin-
                                            ions and policies expressed by this publication do not necessarily reflect those of
                                            DB-LINK or the U.S. Department of Education.

Page 6                                                                                    Overview on Deaf-Blindness

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