Family Leadership Training 1

8/9/2019 Family Leadership Training 1

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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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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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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


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


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 -

Documents

Family Leadership Training 1