Deaf-Blind Overview
MARCH 21, 2013
Introductions
CARLA BECK & KAREN WINDY
PROJECT REACH: ILLINOIS
DEAF-BLIND SERVICES
Project Reach:
Illinois Deaf-Blind Services
• Federal Grant
• Serving Children and youth, ages
birth-21, who have a combined visionhearing challenge
• Free services throughout state of
Illinois
Goals for today
• Learn common causes of deafblindness
• Learn vision and hearing concerns
related to deaf blindness, and their
developmental and educational
implications
• Learn ways to help
What does Deaf-Blind mean?
• Combined vision-hearing challenge
• Cannot rely on hearing to accommodate
for vision concerns, cannot rely on vision
to accommodate for hearing concerns
• In Illinois, 446 youth considered to be
deaf-blind (2011) and 5,624 persons of all
ages (1995)
Are all people who are deaf-blind
born deaf-blind?
Congenital
• Both losses occur at birth (syndromes,
prenatal causes, causes at birth)
Adventitious
• One at birth and one later (syndromes,
accidents, illnesses and medical
treatments)
• Both may occur later in life (syndromes,
accidents, aging, illnesses, medical
treatments)
What is the range of abilities and
needs among people who are deafblind?
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Depends on age of onset
Depends on additional disabilities
Depends on individual personalities
People who are deaf-blind are
receptionists, vending service employees,
proofreaders, teachers, college instructors,
homemakers and parents, agency
directors, computer programmers…
In all cases, the major
disability for persons
who are deaf- blind is
the challenge of
GATHERING
INFORMATION
Common causes of deaf-blindness
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Age
Anoxia
CHARGE
Down Syndrome
Encephalitis
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Meningitis
Prematurity
Syndromes
Traumatic Brain
Injury
• Usher Syndrome
Primary Identified Etiology of Children Who Are
Deaf-Blind
(ages birth through 21)
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Hereditary Syndromes/Disorders
CHARGE association 824
Usher Syndrome (I,II,III) 263
Down syndrome (Trisomy 21 syndrome)
226
• OTHER: Hereditary/ Syndrome Disorders
2375
Primary Identified Etiology (Cont’d.)
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Pre-Natal/Congenital Complications
Cytomegalo-virus (CMV) 332
Microcephaly 275
Hydrocephaly 248
Congenital Rubella 72
OTHER: Pre-Natal/ Congenital
Complications 652
Primary Identified Etiology (Cont’d.)
• Post-Natal/ Non-Congenital
Complications
• Asphyxia 235
• Severe Head Injury 193
• Meningitis 188
• Encephalitis 70
• OTHER: Post-Natal/ Non-Congenitall 590
Primary Identified Etiology (Cont’d.)
• Complication of Prematurity 1108
• No Determination of Etiology 1736
• Source: National Consortium on DeafBlindness. (2012.) The 2011 national child count
of children and youth who are deaf-blind.
http://www.nationaldb.org/documents/produc
ts/2011-Census-Tables.pdf
Primary condition listed on 2011
Census:
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Intellectual Disability – 17%
Visually Impaired – 6%
Hard-of-hearing or Deaf – 13%
Other Health Impaired – 10%
Orthopedic Impairment – 1%
Deaf-Blind – 6%
Physical challenges = 70%
Intellectual disability = 67%
Complex medical needs = 40%
Types of
Visual Impairments
• Acuity Loss
• Visual Field Loss
• Oculomotor Problems
• Cortical Visual Impairment
Acuity Loss
• Blurriness of Vision AFTER best
correction
• May be measured as 20/20
• Legal Blindness begins at 20/200
• Many medical causes lead to acuity
loss
Visual Field Loss
• Peripheral Field Loss
• Central Field Loss
• Scattered Scotomas (Islands of
Vision)
Visual Field Loss
• Peripheral Field Loss
–Unable to see what is coming from
the sides, above and below
–If have a hearing loss, it would be
difficult to know if something is
coming in that field of vision
Visual Field Loss
• Central Field Loss
–Unable to see items directly in front,
only see things to the side
–If there is a hearing loss, may not
realize that someone is in front of
you talking or signing
Visual Field Loss
• Scattered Scotomas (Islands of
Vision)
–Patches in all fields of vision are
affected
–If there is a hearing loss may have
an even greater chance of missing
something or someone
OCULOMOTOR PROBLEMS
• Strabismus is one type of
oculomotor problem
• It may be constant, or intermittent
• Constant strabismus from an
early age may lead to amblyopia
(lazy eye)
• May include nystagmus
(involuntary shaking of eyes)
Cortical Visual Impairment
• Inability of the brain to process visual
information
• Effects can vary from specific visual
inabilities (unable to identify people by
looking at their faces) to overall visual
impairments of acuity or field
Functional Implications of
eye conditions
• Eye conditions can vary from no impact on
vision to no light perception
• Different diseases can have the same
functional impact (acuity, field, etc.)
• A person can have more than one
condition and more than one functional
implication
TYPE OF HEARING LOSS
• A conductive or sensorineural hearing
loss, with amplification, in the better
ear
• An auditory processing disorder
• Unable to use hearing for education,
as determined by educational team
CONDUCTIVE vs. SENSORINEURAL HEARING LOSS
Conductive Hearing Loss
- Medical intervention is sometimes
possible
- Amplification will often improve
Sensori-neural Hearing Loss
- Nerve damage is permanent
- Amplification will not improve clarity
What a person might hear:
• Normal: Freddie thought he should
find a whistle.
• Mild loss: Freddie though- -e -ould
-ind a whi-le.
• Moderate loss: -reddie -ough- -e ould -i-- a -i--le.
• Profound loss: LOUDsoft LOUDsoft
soft LOUD soft LOUDsoft
Other types of hearing loss
besides
conductive and sensorineural
• Auditory neuropathy
• Auditory processing disorders
Auditory Neuropathy
• A simple explanation:
– Think about listening to some music on
a CD player, but there is a frayed wire
somewhere between the radio and the
speaker system. The sound is entering
the perfectly operational player but is
not able to get through the wire and into
the speaker in the correct way. Now
replace the words radio, wire, and
speaker in that sentence with the words
cochlea, nerve and brain.
Auditory Processing Disorder
• A simple explanation:
– Think about listening to your CD player,
but you have a DISTORTED/IMPAIRED
SPEAKER. The sound is entering the
perfectly operational player and is able to
get through the wire and into the speaker
in the correct way but the speaker cannot
properly take in that information which
leads to poor output. Now replace the
words radio, wire, and speaker in that
sentence with the words cochlea, nerve
and brain.
Auditory Processing Disorder
• An example of what it may sound like.
– Imagine watching TV with the volume turned
way down and noise in the background as
loud or louder.
– Imagine trying to watch a foreign language
movie without subtitles.
– Easy to see how a person becomes
distracted, disruptive, tired, irritable.
– Misdiagnosis can occur.
What is daily life like for
people who are deaf-blind?
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Challenges with communication
Challenges getting around
Challenges to learn new things
Challenges in daily living
These challenges are often
compounded with additional
disabilities
Effects on Development
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Social/Emotional
Cognitive
Motor
Communication/Language
Effects on Social Emotional
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Bonding and Attachment
Trust vs. Mistrust
Independence
Self Concept
Effects on Cognitive
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Cause and Effect
Object Permanence
Understanding entire process of activities
General Constructs (classification, conservation,
visual concepts like color, perspective)
• Balance information with excessive verbalism
Effects on Motor
• Different timelines
• Delay greater for mobility milestones
than for stationary motor milestones
• Decreased motivation to move
Effects on
Communication/Language
• Need to have tactile life experiences to attach so
language attaches to meaning
• May have delayed speech
• May use Augmentative and Alternative
Communication Systems
• Need to make visual and tactile
accommodations to systems
What can we do to help?
• Accommodations for
communication
• Accommodations for vision
• Accommodations for
hearing
Communication without complete
vision and hearing
May use residual vision and hearing
May use different techniques in different
settings and situations (multimodal or total
communication)
May need one system for receptive
information, another for expressive
information
May need tactile communication
Possible
communication strategies
• Body
Language
• Touch Cues
• Objects Cues
• Tangible
Symbols
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Sign
Speech
Print
Braille
Critical Receptive Messages
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Hello! I am here!
My name is….
Activity
Touching
Movement
Time to finish
Goodbye!
OBJECT AND TOUCH CUES
Object Cues
– Showing/helping to touch an item to give
information about activities, expectations, and
choices.
Touch (or Body) Cues
- Touching a person’s body in a systematic
way to give information about activities,
expectations, and choices. Used when there is
no logical object to use for an object.
SCRIPTING
1) A step-by step description of movements and
words used while doing something, like the script
of a play.
2) Ensures caregivers do daily routines exactly the
same way.
3) Starts as a receptive communication technique
4) After a while, insert pauses before favorite event of
routine.
5) Student learns to move in anticipation of favorite
part of routine.
6) This movement becomes a home sign for the
activity.
Accommodations
for vision
• Help people use the remaining
vision they have
• Help people get around safely
• Replace visual information
with auditory/tactile information
What might help people see better?
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Glasses/contacts
Surgery
Correct lighting
Reducing glare
Special devices (magnifiers, CCTVs,
telescopes)
• Position, position, position!
How can we adapt materials
to help people
use vision better?
• Size/distance
• Contrast/color
• Clutter/background
ORIENTATION & MOBILITY
• May require the use of more than just a
cane
• Crossing streets are more difficult because
cannot use hearing to determine if it is
safe to cross
What about people who use
wheelchairs or walkers?
• Canes or adapted mobility
devices can be added to walkers
and wheelchairs
• Persons who do not push their
own chairs can be taught to feel
for “landmarks” to know where
they are
Replacing vision with
hearing and touch
• Interpret the visual environment with
sign or voice
• Remember touch and object cues
• Replace pictures with tangible
symbols
• Hand UNDER hand exploration
sometimes works best
ACCOMMODATIONS
FOR HEARING
• Help people use the remaining
hearing they have
• Replace auditory information
with visual/tactile information
Things that may help hearing
• Hearing aids
• Personal Listening Systems
• FM Systems
• Cochlear Implants
Auditory Accommodations
• Get close to what is important to
listen to
• Turn off unneeded sound (if possible)
• Add acoustic features to room (tennis
balls on chair feet, carpets, curtains,
acoustic tile)
• Use prescribed amplification
Guidelines for Working
and Playing with DeafBlind People
• Courtesy
• Guiding
• Communication
• Interpreting
Summary
• Know levels of vision and hearing
• Use prescribed vision and hearing
accommodations
• Be sure to give critical messages
• Try alternative communication if typical
vision or hearing systems is not enough
• Wait for information to get in, and wait for
a response to get out
THANK YOU!
• QUESTIONS?