Deaf-BlindOverview 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 vision-hearing challenge • Free services throughout state of Illinois
Goals for today • Learn common causes of deaf-blindness • 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 deaf-blind? • 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 • Age • Anoxia • CHARGE • Down Syndrome • Encephalitis • Meningitis • Prematurity • Syndromes • Traumatic Brain Injury • Usher Syndrome
Primary Identified Etiology of Children Who Are Deaf-Blind(ages birth through 21) • 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.) • 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 Deaf-Blindness. (2012.) The 2011 national child count ofchildren and youth who are deaf-blind. http://www.nationaldb.org/documents/products/2011-Census-Tables.pdf
Primary condition listed on 2011 Census: • 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. SENSORI-NEURAL 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? • 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 • Social/Emotional • Cognitive • Motor • Communication/Language
Effects on Social Emotional • Bonding and Attachment • Trust vs. Mistrust • Independence • Self Concept
Effects on Cognitive • 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 completevision 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 • Sign • Speech • Print • Braille
Critical Receptive Messages • 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 • A step-by step description of movements and words used while doing something, like the script of a play. • Ensures caregivers do daily routines exactly the same way. • Starts as a receptive communication technique • After a while, insert pauses before favorite event of routine. • Student learns to move in anticipation of favorite part of routine. • 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? • 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