Introduction to Deafblindness

Introduction to Deafblindness
Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed

Deaf-blindness & CVI Session Outcomes
Understand how a combined vision and hearing loss impacts attachment and family bonding as well as all domains of development Understand Cortical Visual Impairment (CVI) and the use of effective strategies designed for infants and toddlers with CVI Increase knowledge of effective intervention or instructional strategies for children with deafblindness and/or CVI

Conversation (under simulation)
Prepare: Read and think about how you will convey your message NO SPEECH, SIGN, OR WRITING Put on goggles and put in ear plugs You will be moved and placed with a partner Introduce yourself and then give your message (from the paper handed to you) A tap on the shoulder will signal to remove your blindfold Reflection and discussion

What is Deaf-Blindness?
Deaf-Blindness represents the combination of varying degrees of hearing and vision loss.

What is Deafblindness? Also known as dual sensory impairment
A combined vision and hearing loss Also known as dual sensory impairment Very few children identified as deafblind are totally deaf and totally blind There is a wide range of of cognitive and developmental ability among children who have dual sensory impairments

Did you know… Vision and Hearing are both distance senses
95% of all learning is through distance senses 80% of learning is through vision 90% of learning is incidental

Critical Factors Four critical factors which affect the severity of deafblindness on the child and his development are: Age of onset Degree and type of vision and hearing loss Stability of each sensory loss Educational intervention provided

Tremendous Variability
National Deafblind Child Count Summary 10,471 (2012) Losses range from mild to completely blind or deaf Combination of losses is the significant factor Additional disabilities 55% have physical impairments 62% have cognitive impairments 47% have complex health care needs 68% have speech language impairments 26% have Cortical Visual Impairment

How Many Are Deafblind? Nationally Birth-2 (2012): 555 Vermont
Children (ages birth – 21 years) 10,471 (National Child Count Data 2012) Collected via state deafblind projects Birth-2 (2012): 555 Vermont 2012: 3 Now: 0 National Association of Regulatory Commissions (concerning the technology distribution grant)

Combinations of Hearing & Vision Loss
-Common experience of children with combined hearing & vision loss -Some degree of functional vision & hearing Blind & Deaf Minimal Vision & Deaf Low Vision & Deaf 91 + dB Profound Blind & Very Limited Hearing Minimal Vision & Very Limited Hearing Very Limited Hearing 71 – 90 dB Severe Blind & Hard-of-Hearing Minimal Vision & Hard-of-Hearing Hard-of-Hearing 50 – 70 dB Moderately Severe 41 – 55 dB Moderate Blind & Func Hearing Minimal Vision & Functional Hearing Functional Hearing 26 – 40 dB Mild 0 – 25 dB Normal Totally Blind Light Perception Visual Acuity 20/400 – 20/1000 Peripheral Field <20 degrees Visual Acuity 20/200 – 20/400 20/70 – 20/200 Normal 20/20 Created by Susanne Morgan Morrow, MA, CI, CT - NYDBC

Etiologies of Deafblindness
Syndromes Down Usher Trisomy 13 Multiple congenital anomalies CHARGE Hydrocephaly Fetal alcohol Microcephaly Maternal drug abuse

Etiologies of Deafblindness
Prematurity Congenital prenatal dysfunction AIDS Herpes Rubella Syphilis Toxoplasmosis Post – natal causes Asphyxia Head injury/trauma Stroke Encephalitis Meningitis

Assessment Issues Clinical data important but insufficient
Functional assessment of vision & hearing in natural settings essential Beyond function of eye and ear, into functional use of sensory input

Assessment Issues continued
Traditional clinical evaluation and many other assessments tend to be communication dependent Symptoms of loss (especially hearing loss) similar to other diagnoses (lack of language development, speech, attention, behavioral challenges, atypical reactions to sensory input or difficulty regulating input) Interaction skills of the communication partner during observation or assessment make all the difference in how successfully the child can demonstrate skills

Effects of Hearing Loss on Development of Communication
Loss of adequate language models Inhibited social interactions on the part of others Concept development may be limited Partners may be limited May sharpen other senses

Effects of Vision Loss on Development of Communication
Relationship with others- especially infant bonding Relationship with material world Concept development Mobility, curiosity, exploration May sharpen other senses Compensate for missing stimulation (“blindisms”) People distance themselves

Effects of Hearing and Vision Loss on Development of Communication
More difficult to compensate for missing input Environment is narrowed- without physical contact or close physical presence- ALONE Difficult to communicate with more than one person at a time May be accompanied by other disabilities Lack of shared modes of communication Lack of partner skill to communicate Intelligence may be underestimated or overestimated

Tips for Instructional Practice
Best Practices in Deaf-Blindness: Developing rapport Active Learning Appropriate hand use & respectful touch Identifying appropriate communication modalities Shared experiences Interveners EMMA

Developing Rapport

Every introduction with a deaf-blind child requires a ‘greeting ceremony’.”
SUSIE ~Dr. Jan van Dijk

Developing Rapport Approach the child from the side, first point of contact should be at the shoulder or leg so as to not startle Tap lightly and use your voice to announce yourself, when appropriate Wait for acknowledgement and allow the individual to reach or look for communication

Developing Rapport Make your hands available; do not manipulate the child’s hands- remember, children who cannot see use their hands as their eyes Move slowly, and listen to the child with your whole body. Provide wait time so that the child can process information and move at his/her own pace Observe the child closely for communication attempts in the form of movements, muscle tension, change in posture, eye gaze, vocalizations, and gestures and then respond through turn taking

Video Example: Rapport
Barbara Miles Video Conversations Chapter 3

Developing Rapport The child builds relationships and feels secure
With this sense of security, the child begins to explore and reach out to learn about the environment

Active Learning Active Learning: Emphasizes toys with sound and touch
The Learner is the active one Everyone can learn Equipment to support active learning: The Little Room/Resonance Board

Appropriate Hand Use

Appropriate Hand Use What is it?
Tactile learning depends on the use of touch to access information for learning. Tactile learning is part of the somatosensory system along with proprioceptive and kinesthetic components of perception. People who are deaf-blind depend on their sense of touch for learning, communication and social relationships.

Video Example: Joel

Appropriate and Respectful Touch
Hand UNDER Hand: Placing your hands under the child’s hands allows the child to engage in the activity at his or her own pace. This does not force the child into activities but provides a safe and respectful platform for interacting with the environment.

Hand Under Hand

Shared Modes of Communication

Communication Modalities
Pre-symbolic (concrete) modes Touch cues, name cues and name signs Object cues, some tangible cues Photographs, line drawings (some) Symbolic (abstract) modes Tangible symbols Line drawings (some) Sign Language Spoken (Voice Output) Language

Deaf-blind individuals, regardless of etiology or additional challenges, are, by nature, multi- modal communicators. SUSIE

Modes of Communication
Individuals who are deaf-blind will utilize multiple modes of communication, either simultaneously or at different times for different purposes The child may: Shift modes throughout the course of a day based on lighting needs, fatigue, or ease of access, Use multiple modes within the same setting, or Use different modes with different communication partners

Shared Modes of Communication
The mode of communication you use must be accessible to the child Model communication using shared modes Provide for incidental learning through access: allow the child to observe conversations in his/her shared mode

Conversations

Shared Experiences

Shared Experiences Proximity- having access to people and things for exploration within close proximity Wait time: give child time to process information Doing WITH, not FOR – sharing an experience not giving an experience EMMA

Video Example Video of N drinking water with Mamma

Introduction to Cortical Visual Impairment

Cortical Visual Impairment
Information Based on: Cortical visual impairment: An approach to assessment and intervention, 2007, AFB Press by Christine Roman-Lantzy Selected slide content provided by Sandra Newcomb, PhD Connections Beyond Sight and Sound University of Maryland

What is Cortical Visual Impairment?
Vision loss due to damage or malformation in the brain that interferes with the child’s ability to understand visual information coming from the eyes CVI is the leading cause of visual impairment in young children living in the Western Hemisphere

CVI is suspected when: Medical eye exam cannot explain level of visual impairment History of brain injury or malformation Presence of unique visual characteristics

Medical history significant for CVI
Asphyxia/Hypoxic-ischemic encephalopathy (HIE) CVA/stroke Intraventricular hemorrhage (IVH) Periventricular leukomalacia (PVL) Infection Structural anomalies Trauma Prematurity Metabolic disorders

CVI Characteristics CVI Characteristics

Unique visual characteristics
Color preference Need for movement Visual latency Visual field preferences Difficulties with complexity Light-gazing and nonpurposeful gaze Difficulty with distance viewing Atypical visual reflexes Difficulty with visual novelty Absence of visually guided reach

Color preference Color vision is usually preserved in children with CVI Children often have a favorite color or will only look at certain colors Children with typical vision or ocular problems will look at any color

Need for movement Movement attracts visual attention
Children with CVI may only look at something that moves or has movement quality (shiny) Way to “jump start” the visual system Often helps children with CVI with mobility

Visual latency Latency is the length of time between when a visual stimulus is presented and when a child looks at or orients towards the stimulus

Visual Field Preferences
Children often have field losses or field preferences with a strong preference for looking at objects when presented in specific positions of peripheral and/or central viewing fields

COMPLEXITY Complexity of array Complexity of sensory environment
Complexity of target/object Array: single color Surface: Distance viewing..environmental factors hallmark characteristic of CVI – three-parts: a. The surface of object, b. The array in which object is presented, c. the complexity of sensory environment –a: begin with single-color objects – b. finding your mother in Three Rivers Stadium (have normal vision, and know your mother – but couldn’t find her in a full stadium in daylight while standing on field) – c. sensory environment (can’t simultaneously process multi-sensory information – if given both visual and auditory input, will always listen rather than look) – pace the presentation and don’t give visual and auditory together – complexity of array – moves in close not as result of acuity problem but to block out as much of the complex array as possible – can’t dis-embed an object from a very busy background – recognition of human face is one of the last things to resolve in CVI (this is because a person’s face doesn’t stay the same: they may change their jewelry, expressions, movement, makeup)

Complexity of Target/Object

Complexity of Array

Complexity of Sensory Environment

Light Gazing and Non-purposeful Gaze
60 % of children with CVI often compulsively gaze at lights Most have periods of non-purposeful gaze when they are not looking at anything in particular

Difficulty with Distance Viewing
Children with CVI can often only look at things close to them Distance is a function of complexity

Distance Viewing Difficulty with looking at a distance is typical. Can be related to complexity.

Atypical Visual Reflexes
Reflexes often absent, latent, or inconsistent Blink to touch between eye brows Blink to threat

Difficulty with Visual Novelty
Children with CVI often look at familiar things better than novel items Novel environments can be challenging Familiarity is easier because CVI is about learning. The child has learned to look at what is familiar.

Absence of Visually Guided Reach
Children with CVI often have trouble using eyes and hands together Often look, look away and reach Some children cannot look at what they are holding Some children need to touch something to look at it

Direct Evaluation/Interaction with Child
Assessment: CVI Range Parent Interview Observation Direct Evaluation/Interaction with Child

CVI Range Number ranges (0-10 scale used in assessment) describe specific levels of functioning Phases (I, II & III) describe broad functioning levels and guide intervention strategy to support best visual functioning

Phases of CVI CVI Phases

Severity of CVI Severity of CVI is described in three phases
Phase 1 (Severe) Phase 2 (Moderate) Phase 3 (Mild) CVI phase is determined by assessment using the CVI Range Intervention guided by phase and characteristic 65

Severe CVI - Phase I Limited use of vision and cannot do anything else when they are “looking” Most CVI characteristics interfere with visual functioning The major goal of Phase I is to build stable visual functioning We want to give the student practice “looking”

Moderate CVI - Phase II Major goal is to begin to integrate vision and function We want to give the child practice using vision in the context of daily routines and activities

Mild CVI - Phase III Major goal of Phase III is to use vision for learning Children demonstrate visual curiosity Children can look at pictures and other 2-dimensional material Children can use their vision to learn about their environment

Intervention for children with CVI

Progression of Resolution
Early Resolution Light gazing, blink reflex Mid Resolution color, latency, novelty, visual threat, movement Later Resolution Field, visual motor, complexity, distance viewing Successful resolution is dependent on 2 things: Brain – problem if degenerative condition – difficult to make progress in vision if overall brain in not improving – seizures are not a reason that a child can not make some progress – stability is key issue Environment – hard to convince others about the need for environmental changes to support the intervention Why do the characteristics resolve in the particular order that they do? Resolve by most primitive to more advanced. Higher order processing items resolve last. 70

General intervention principles
Intervention must be intentional Intervention must be precise Expect change Always be aware of the environment Intentional – we must be aware of vision in all activities and make the adaptations the child needs Precise - targeted to child’s CVI characteristics

General intervention strategies
Intervention needs to occur in the context of every day life of the child Children often perform better at home Provide input at the child’s level, NOT above CVI intervention is an approach not a therapy

Interventions “Environmental engineering” Careful selection of targets
Background Sequencing of increasing complexity Diagnostic teaching Exposure Recognition Discrimination Teaching child to use vision Fade supports as visual function shows “resolution” of CVI characteristics “with appropriate and practical strategies for developing visual skills, integrated into daily routines, many of these children can improve their ability to process visual information and make sense of what they see” (Burkhart) – in order to be effective, stimulation of the child’s vision needs to happen in everyday real-life situations, not only in therapy sessions with the vision teacher Maintaining the best environment – particularly at Phase 1, comfortable – do not try to “push ahead” Child with CVI will invariably perform better at home Parents may report that child sees better at night – not surprising: at night, lower complexity, less noise, lower light Convergence: both eyes come together to fixate on object Accommodation: lens thins and thickens to look at object Peripheral is “where” vision; Central is “what” vision Fixation: sustained gaze upon an object for 3-5 seconds; eye to object Localization: turning in the direction of the target With CVI, meet the child where he/she is at – do not push up until child shows that he/she is ready – build pathways – if he/she is looking, then you are doing it right Intervention is an APPROACH not a therapy Parents are the best reporters of their children Use a systematic approach based on assessed levels -assess and intervene for all CVI characteristics scored less than 1 -only exception is reflexes – do not intervene on those Random does not work -“Yes, we’re lost but we’re making really good time” Ask: When you see fluctuations think is it about student’s vision or the environment or instruction? -Like the weather…Is everyone hot or is it just me? -Instruction is often not consistent – but we blame it on the child Interventions should be designed to meet not exceed assessed level of function -The student leads the way -When student demonstrates skill at a higher level, re-assess – probably there are changes in other characteristics as well Re-evaluate often -This is a change model Children with CVI often do not regard things in 2-D until they are in Phase III Flashlights should not be used for intervention – only for assessment. Try to find objects that the child can hold – moving into Phase II Do not use light for tracking – doesn’t lead to any functional outcome Perhaps use switch to turn on light, or wrap light around cup – want child to use object, hold, reach, touch, etc. Light should be behind the student, not in front, except for lightbox -Precision – random doesn’t work -Intentionality – know where you are and where you are going -Reciprocity – watch the child, follow their lead -Change – expect improvement -Environment – often responsible for changes in visual response When designing the intervention, set up tasks that are consistent with his current performance. Do not add challenging tasks until child demonstrates 100% visual responses to current task level. Child may show that he/she is ready to move on by looking at something unexpected.

Intervention by CVI Phase
Phases Intervention by CVI Phase

Phase One Intervention
Build Stable Vision High level of environmental control Plan times of the day when the child can practice vision without other demands For each position that child spends time, place something (from “vision” toys) to look at

Use “down” time for vision activities, e.g. tube feeding Use single colored objects/favorite toys Move object slightly/use reflective materials Use light to initiate looking at an object/target

Use characteristics of familiar objects to introduce new objects Bring items closer and place them on plain black background Allow child to focus visually without auditory distraction Present objects in the child’s preferred visual field New items may overload system – visual pathways must be built slowly over time -If child uses red bowl at home, knows it is time to eat – use red bowl at school – consistency over time and location Single colored slinky provides preferred color + movement -Child will not look at an object that is unfamiliar to the child or an object that shares no similar characteristics to a familiar object. -Number of familiar objects which will be viewed will increase as vision improves. Will need to use familiar objects in a “visual warm-up session”. Begin by determining: What does child already like to look at? Remember to make background simple Use of black smock when signing Highlight with flashlight Materials/pictures: simple in form, high contrast, and presented one at a time Use single colors and/or plain patterns Present one item at a time Decrease clutter Decrease the amount of stimulation during visual activities Do not speak when child is “looking” – allow vision to work without distraction Pace the presentation and don’t give visual and auditory together -Young child’s brain is wired to pay attention to movement – can help to understand difference between object and background -Different than with ocular impairment in which movement makes it more difficult to see -May locate something moving with peripheral, inspect more closely with central vision -Reflective objects will not need to be moved as light provides movement -Reflective objects may include: mylar balloons, pom poms, shakers -Using mirror provides light & reflection, but watch for complexity -Need to keep object in same visual field long enough for child to see it -Move object without sound (eg. shake it gently in one location) instead of moving through wide area -Must keep visual field preferences in mind here -Latency may decrease after a “warm up” period – but could increase due to fatigue if session is too long Strategies As well as providing ample time for the child to respond to a visual presentation, provide ample time for the child to look at the object in order to gain meaningful information from it. Use objects that accommodate the child’s visual preferences, relative to their CVI. Observe the child for factors that affect latency such as fatigue, time of day, medications, etc. and schedule activities that include visual responses during the times the child is at their best. Talk to parents and other therapists. Provide supportive positioning during activities that include visual responses, consulting with the child’s physical therapist. – use light as a motivator – if using light, add color, preferably the preferred color -Use lightbox as stage to illumine objects. Do not use for direct viewing. -Looking away seems to help child complete task -Would not be helpful to try to teach child to use vision to look at a task at “critical moment” – allow them to look away and complete task tactually in early phases Consult with the Vision Teacher on the child’s visual impairment and the presence of ocular impairment. If an ocular impairment is present, what are the functional implications on his/her ability to respond to objects in different areas of his/her visual field. Talk to the parent and other people who work with the child to find out where they have observed the child’s best area of vision to be. Observe the child for an increased ability to respond to objects in other areas of their visual field. Videotape the child during play and therapy sessions for further information on the child’s visual responses that may not be observed when working with him/her. -Field preferences exist and some believe that the preferred field can change from day-day or even within an activity (Burkhart) – may be a function of environmental changes as opposed to child change – (Discuss this) -Observation of the child is the best guide in determining preferred field, but be aware of complications of motor impairments -Important to look at child’s head position when child is trying to use vision – gives you a lot of important cues re: where child sees best -Need to determine best position for student to use their eyes -Sitting may be difficult if they have to exert lots of energy to maintain position Function of complexity – as this resolves, child will be able to increase visual distance

Phase One Intervention Ideas

Phase Two Intervention
Integrate vision into all routines Intervention is overlay in all activities Plan the vision component of the beginning, middle, and end of all routines Use objects from Phase 1 with expectation that child will act on materials Try to find objects that the child can hold – moving into Phase II -frequently have preferences for objects of specific color – best way to find out is to ask the parent – best to use single color objects – better to use objects that child can interact with rather that objects they can just look at Provide opportunity for interaction with object. Combine preferred color with additional color with preferred or favorite object. Important that visual materials be presented consistently and frequently and that they relate to function May see better when told what to look for ahead of time -Presenting choices – may need to present each one individually in preferred field at first, then close together in child’s field -Use lightbox or light enhancement to encourage looking Do not use light for tracking – doesn’t lead to any functional outcome Perhaps use switch to turn on light, or wrap light around cup – want child to use object, hold, reach, touch, etc. Light should be behind the student, not in front, except for lightbox

Phase Two Intervention
Limit number of objects presented simultaneously Use lightbox to direct visual attention Move highly motivating objects further away Touch may initiate looking Use familiar objects in daily routines Use new objects that share characteristics of familiar objects

Phase Two Intervention Ideas

Phase Three Intervention
Demonstrate visual curiosity, visual learning Spontaneous use of vision May look at self in mirror May look at pictures

Still may have problems in new environments Remember prior preferences in color, movement, light, etc when introducing novel materials Literacy: Highlight words with color, limit complexity, teach shapes of words

Phase Three Intervention Ideas

Preview environments, teach landmarks Tell the student what to look for in a visual display or environment If child does not look at something, review complexity Use movement for distance viewing Point out/teach salient features in pictures

Phase Three Intervention Ideas

Activity You will be placed in groups around your table
You will be given a profile of a child with CVI Work together as a team to develop interventions that could be implemented in the home across daily routines and activities Consider: how would you involve the family, what items would you use, how will these items change as the child moves through the phases

Questions Questions?

Thank you for participating. For more information please
contact us at the number or below. University of Vermont Mann Hall 208 Colchester Ave, 3rd Floor Burlington, VT 05405 Susan Edelman, Ed.D., PT Project Director, Vermont Sensory Access Project (VSAP) Emma Nelson, M.Ed. Project Coordinator, Vermont Sensory Access Project (VSAP)

Introduction to Deafblindness

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