vermont sensory access project susan edelman, ed. d.,pt emma nelson, ms ed

Vermont Sensory Access Project Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed

Introduction to Deafblindness

Deaf-blindness & CVISession 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 combinatio

n of varying

degrees of hearing

and vision loss.

Drag picture to placeholder or click icon to add

What is Deafblindness?

• 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• 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

Combinations of Hearing & Vision Loss

Blind & Deaf

Minimal Vision & Deaf

Low Vision & Deaf

91 + dBProfound

Blind & Very Limited Hearing

Minimal Vision & Very Limited

Hearing

Low Vision & Very Limited Hearing

71 – 90 dBSevere

Blind & Hard-of-Hearing

Minimal Vision & Hard-of-Hearing

Low Vision & Hard-of-Hearing

50 – 70 dBModerately Severe

41 – 55 dBModerate

Blind & Func

Hearing

Minimal Vision & Functional

Hearing

Low Vision & Functional Hearing

26 – 40 dBMild

0 – 25 dBNormal

Totally Blind

Light Percepti

on

Visual Acuity

20/400 – 20/1000

Peripheral Field

<20 degrees

Visual Acuity

20/200 – 20/400

Visual Acuity 20/70 – 20/200

Normal 20/20

Created by Susanne Morgan Morrow, MA, CI, CT - NYDBC

-Common experience of children with

combined hearing & vision loss

-Some degree of functional vision &

hearing

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 onDevelopment 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

Developing Rapport

Every introduction with a deaf-blind child

requires a ‘greeting ceremony’.”

~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 Boardwww.lilliworks.org/

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.

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

Video Example

• Video of N drinking water with Mamma

BREAK

Vermont Sensory Access Project

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 bySandra Newcomb, PhDConnections Beyond Sight and SoundUniversity 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

1. Color preference2. Need for movement3. Visual latency4. Visual field preferences5. Difficulties with complexity6. Light-gazing and nonpurposeful gaze7. Difficulty with distance viewing8. Atypical visual reflexes9. Difficulty with visual novelty10.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

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

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

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

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

Vermont Sensory Access Project

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

General intervention principles

Intervention must be intentional

Intervention must be precise

Expect change

Always be aware of the environment

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

Phases

Intervention by CVI Phase

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

Phase One Intervention

Phase One Intervention

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

Phase One Intervention

Phase One Intervention Ideas

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

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

Demonstrate visual curiosity, visual learning

• Spontaneous use of vision

• May look at self in mirror

• May look at pictures

Phase Three Intervention

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

Phase Three Intervention Ideas

Phase Three Intervention

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?

Vermont Sensory Access Project

Susan Edelman, Ed.D., PTProject Director, Vermont Sensory Access

Project (VSAP)susan.edelman@uvm.edu

Emma Nelson, M.Ed.Project Coordinator, Vermont Sensory Access

Project (VSAP) emma.nelson.1@uvm.edu

Thank you for participating. For more information please

contact us at the number or email below.

University of VermontMann Hall208 Colchester Ave, 3rd FloorBurlington, VT 05405http://www.uvm.edu/~cdci/