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The Indiana Deafblind
Services Project NCDBFamily Leadership
Training Program
Karen Goehl, Project Director
Lisa Poff, Program Coordinator
Barbara Purvis, TA Specialist NCDB
Indianapolis, IN
April 30 May 2, 2010
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The Many Faces ofDeafblindness
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DeafBlindness:
The Big PictureNational and State Deafblind Programs
The Deafblind Census
Etiologies Related to Deafblindness
Deafblindness and Communication
Deafblindness and the Family
Social Implications of Deafblindness
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What We Want to Accomplish
Increase your understanding of:
National and state resources related to
Deafblindness
The diversity of the population
The major etiologies of deafblindness
The impact of Deafblindness on
communication and social developmentThe impact of Deafblindness on quality of
life
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The Deafblind Program
Families
NFADB
AADB
Hilton-PerkinsProgram
Natl Coalitionon DB
Indiana DeafblindServices Project
NCDB TA & Information Services HKNC
US Dept of EducationOffice of Special Education
Programs (OSEP)
FromBirth To 22
years
Birth to 3(First Steps)
Programs
SchoolPrograms
CommunityAgency
Programs
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Who We Are and What We Do
NCDB
Technical assistance &training to deaf-blindprojects, states and
families Develop and distributeinformation
Connect national, stateand local resources toimprove services
Coordinate activitiesbetween universities thatare training teachers
Indiana DeafblindServices Project
Training & technicalassistance to families,
schools and agencies topromote best practices
Disseminate informationrelated to best practices in thefield of Deafblindness
Support families by
connecting them to resourcesand other families of childrenwho are Deafblind
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What are some Indiana
Project services?Child-focused consultations (TA)
In-service Training Activities
NewsletterParent/Professional LoanLibrary
On-line training materials
Maintain a state registry ofstudents who are deafblind
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National Definition of
DeafblindnessDeaf-blindness means concomitant
hearing and visual impairments, the
combination of which causes suchsevere communication and other
developmental and educational needs
that they cannot be accommodated in
special education programs solely forchildren with deafness or children with
blindness. 34 CFR 300.8 (c) (2)
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Indiana Definition of
DeafblindnessSec. 5. (a) Deaf-blind, which may be referredto as dual sensory impaired, means a disabilitythat:
(1) is a concomitant hearing and vision loss orreduction in functional hearing and vision capacity;
(2) causes significant communication and adaptive
behavior deficits;
(3) adversely affects the student's educational
performance; and (4) cannot be accommodated for by use of a
program or service designed solely for students who
are:
(A) deaf or hard of hearing; or
(B) blind or have low vision.
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Indiana Definition of
Deafblindness(b) Students who are deaf-blind represent a heterogeneous group thatincludes the following:
(1) Students who are both deaf and blind with:
(A) measured acuities and intellectual and
adaptive functioning; or
(B) estimated acuities and intellectual and
adaptive functioning supported by a description
of pathology. (2) Students with hearing and visual reductions of a mild to severe degree:
(A) with additional learning or language disabilities
that adversely affect educational performance;or
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Indiana Definition of
Deafblindness(B) who have been diagnosed with a chronic ordegenerative pathology or a disease that may
potentially result in deaf-blindness.
(3) Students with generalized central nervous system
dysfunction who:(A) exhibit:
(i) auditory and visual impairments; or
(ii) deficits in auditory-visual functioning; and
(B) may demonstrate inconclusive or inconsistent
responses:(i) during hearing and vision assessments; or
(ii) to auditory and visual stimuli in the environment.
(c) A student who is solely deaf-blind is not
considered to be a student who has multiple
disabilities as defined in section 9 of this rule.
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Who are we trying to
identify?Children with hearing and
vision losses occurring
together in any combination,
or who are at risk for vision
and hearing losses, are
eligible for services from our
project.
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Vision and Hearing
Impairment Categories
Visually Impaired and Hearing Impaired
with Vision being the primary disability
Visually Impaired and Hearing Impairedwith Hearing being the primary disability
Deaf and Visually Impaired
Blind and Hearing Impaired
Deaf and Blind
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Deafblind
Broad definition
No single profile
Tremendous variation within
the same medical diagnosis
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What are Common Etiologies
Related to Deafblindness?
Tell Us About Your Child
Top Etiologies Nationally and in Indiana
Finding Information About Etiologies
etiology
the cause of a medical or disability condition
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Top Etiologies National and State
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AboutIndiana
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What is the Deafblind
Registry?As a part of Project activities wemaintain a Statewide registry of
students who have both a combinedvision and hearing loss
Currently have 204 childrenreported.
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Top Indiana Etiologies
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Age Ranges
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Census Distribution by County
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Etiology Activity
1. Pair up with another participant and choose oneetiology to explore.
2. Use the Internet to research and answer some or
all of the following questions about the etiology:
What are some of the unique characteristics ofthe etiology: vision, hearing, physical,
cognitive, other
Are their online or face-to-face supports
available for family members? What are these?
Is there medical and education information
available on the Internet?
3. Share what you find out with the group.
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Points to Consider About
Etiologies
To know an individuals etiology is NOT to saythat you know the individual
Absence of a diagnosis can be a nagging
mystery or fearPossible etiologies should not be casuallymentioned
Pay attention to the source and publication date
of print and Internet resources
Connecting with another person or family whoshares the diagnosis can be invaluable
Thanks to California Deaf-Blind Services, Fact Sheet #33
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Understanding the Impact of
Deafblindness on Life and
Learning
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Sensory Categories
Near = must be part of direct experience to obtaininformation
Near Distance
- Taste -Vision- Smell
- Touch - Hearing
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Hearing and Vision
Factors Affecting Use Onset of Disability
Type and Severity of Loss
Stability of Condition Environment
General Health
Additional Disabilities
Motivation Preference
Fatigue
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General Effects of
Deafblindness
Tremendous limitation of incidentalinformation
Difficulties with concept development
Limited motivation for interaction
Sense of vulnerability
Potential for isolation
Potential for learned helplessness
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Many areas of development andgrowth are impacted by deaf-blindness. Lack of informationthrough the senses is one of the
biggest impacts.
Communication, movement,learning, and emotional developmentare all affected by deaf-blindness
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Deafblindness
Unique Combination of Risks
Isolation
Individual instruction very near the person
Reliance upon interpreters & intervenersLimited number & variety of experiences
Limited social experiences and opportunities
Impact on attachment, communication, and
concept development
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Sensory Perspectives
Project Sparkle Video Introduction
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Simulations
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What did you learn?
What does it mean?
How can we help?
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Social and Emotional Impacts of
Combined Vision and Hearing Loss
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Isolation Vulnerability
Caution or Fear Dependence on
others
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How can we help?
We can help children have:
Secure relationships
Access
Ways to communicateInstruction designed tomeet their unique needs
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How can we help?
We can provide:
Predictable routines
Responsive environments
Hands-on learningConsistency
Choices
Repetition and practice
Respect
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How can we help?
We can teach conceptsalong with skills. Thatmeans learning thatobjects and people:
ExistHave permanenceHave namesDiffer from each other
Have characteristicsHave purpose and uses
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Effects of Deafblindness on
Communication
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Communication Rights
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TASH Resolution
Communication Rights
Right to Request desiredobjects, people, events
Right to Refuse undesired
actions, objects, eventsRight to Express personalpreferences and feelings
Right to be Offered choices and
alternativesRight to Request attention andinteractions
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Tash Resolution
Communication Rights
Right to reject offered choicesRight to ask for and receive informationabout changes in the routine and theenvironment
Right to receive a response to any andall communicative intentions
Right to have access to augmentativeand alternative communication andassistive technology
C i ti i th t l
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Communication is the central
priority because it is
necessary for:Forming relationships
Interacting with the worldLearning and sharing what youknow
Organizing what you learn and
how you think about itGetting information about theworld around you
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Communication:
Three Basic IdeasEveryone communicates. Whether itbe a sigh, blink, point, gesture, sign orword. Everyone can communicate.
Our challenge is to find out how ourlearners with deaf-blindness
communicate and respond to it. We canthen try to 'shape' the communicationinto more formal systems.
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C i ti
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Communication:
Three Basic IdeasEveryone is unique. There is no singledescription of a learner with deaf-blindness that fits all learners. Whatworks for one learner may not work for
another.
The "I" in IEP and IFSP stand for"individualized" and that is what our learnerswith deaf-blindness are - very individualized
and in need of very individualized instruction.Most learners with deaf-blindness have someusable vision and hearing. Every effort shouldbe made to use and enhance the remainingvision and hearing.
C i ti
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Communication:
Three Basic Ideas
Everyone needs input. Deaf-blindnessis an information-gathering disability. Weall need information about the worldaround us. Most of us receive thatinformation by observing and listening.Imagine if the only information youreceived about the world was throughyour touch, taste, smell and distorted
vision and hearing.
We need to find the most appropriate wayto provide input to learners with deaf-blindness.
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The Reasons We Communicate
to socializeand to interactwith others
to exchangeinformation
to makerequests
E i d R ti
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Expressive and Receptive
Communication
Expressive communication is how wecommunicate to others.
Receptive is how we understand others
For many children with deaf-blindness,expressive language may be differentfrom their receptive language forexample, they may understand some
signs, but only communicate usinggestures such as pointing
People Can Communicate
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People Can Communicate
Through:
Body Language, Behaviors
Gestures, Vocalizations
Tactile Cues 3-D Tangible Symbols
Photos, Drawings
Sign Language
Speech
Print, Braille
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Hand-in-Hand Video
Describes different ways thatyoung people who are deaf-blindmay communicate
Some people who are deaf-blindcommunicate using vision orhearing, and some only throughtouch
Research shows that learning asimpler way to communicatedoes not prevent a person fromlearning language
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As Your Child Does Things
Ask Yourself:
What might he be
saying?
What is she tryingto tell me?
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One Parent Role Is To Be ACommunication Facilitator/Partner
The Facilitators Role
Tune in to behaviors thatthe child prefers to use
Foster a nurturingrelationship of security andwarmth
Provide comfort, supportand affection
Create positive
environments forinteractions
Focus on the individualsinterest at the moment
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Ski Hi Unit 2
Communication Forms
Picture symbols and objectsymbols are more concretesymbolic communication forms.
Sign language, spoken language,and written language or Braille
are all more abstract symboliccommunication forms.
Communication Forms that are Best
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Ski Hi Unit 2
Communication Forms that are Best
for Children with Sensory Losses
Children with sensory losses need tobe exposed to all forms ofcommunication without beingoverloaded with too much information
in different ways.Keep communication clear by usingways that the child seems tounderstand.
WAIT, WAIT, WAIT!!!!! for responses.
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Touch and Object Cues
For receptive communicationneeds
Presented on an individuals body
Made consistently by everyonewho is in contact with theindividual
Immediately precedes an action
or activity Should be sufficiently distinct to
easily discriminate
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Tangible Symbols
May be: 3 dimensional (objects) or 2 dimensional
(pictures)
Identical objects Partial or associated objects
Artificial symbols
Photos
Pictures or line drawings
Charity Rowland, Ph.D., Design to Learn, Tangible Symbol Systems,Oregon Health & Science University
http://www.ohsu.edu/oidd/d21/ts/index.cfm
http://www.ohsu.edu/oidd/d21/ts/index.cfmhttp://www.ohsu.edu/oidd/d21/ts/index.cfm -
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Communication Forms
Object cue
Partial
Object cue
Picture
symbol cuePicture
Cue
Tactual
symbol cue
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Calendar Systems
A system that allows an individualsmode/s of communication to be utilizedin such a way that scheduling andtherefore anticipation and organization
are the focuses. Texas School for the Blind & Visually
Impaired Texas Deaf-Blind Project
http
://www.tsbvi.edu/Outreach/deafblind/index.htm
http://www.tsbvi.edu/Outreach/deafblind/index.htmhttp://www.tsbvi.edu/Outreach/deafblind/index.htmhttp://www.tsbvi.edu/Outreach/deafblind/index.htmhttp://www.tsbvi.edu/Outreach/deafblind/index.htm -
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What is an Experience Book?
The learning style of individualswho are deafblind/have multiple
disabilities is largely one ofdoing or experiencing.
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Experience Books May Provide:
Information Comfort of familiar experience
Step-by-step direction
A tool for anticipation
Means for interaction & socialization A possible independent leisure option
Insight into an individuals personality
The Experience Book (Monaco & Mamer
(2006) Deafblind Resource Services, Brantford,Ontario, Canada (Handout in Resource Packet)
Experience Book:
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Experience Book:
Sample Page
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Conclusion
As human beings, our job in life is to help peoplerealize how rare and valuable each one of us reallyis, that each of us has something that no one elsehas or ever will have something inside that isunique to all time. Its our job to encourage eachother to discover that uniqueness and to provide
ways of developing its expression.
- Fred Rogers -