social networks making a meaningful difference in everyday ... networksagosci.pdf · social...
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SOCIAL NETWORKS Making a meaningful difference
in everyday lives Sarah W. Blackstone, Ph.D. CCC-SP, Augmentative Communication Inc.
Rehabilitation Engineering Research Center on Communication Enhancement (AAC-RERC)
www.augcominc.com
www.aac.rerc.com
www.patientprovidercommunication.org
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Some websites and resources (mentioned during workshops)
4/25/2013
www.augcominc.com
Free newsletters on a range of topics; DF of this presentation with references
www.aac-rerc.com Webcasts on early language, literacy, autism, etc. Links to articles, etc.
www.patientprovidercommunication.org Information about supporting people with disabilities in medical settings
www.bridgeschool.org/transition/index.php Framing a Future, educational and outreach materials.
www.primeengineering.com/pages/mainPages/products.html Kid Walk. hands-free walker for kids with limited mobility
www.bridgeschool.org
Lots of resources for teachers clinicians, and family members
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21st Century Social Network websites
bebo blogger cyworld facebook gotolog friendster hi5 livejournal myspace orkut skyblog studiverzeichnis unidentified
Age distribution June 10, 2010
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My Goals for today
• Rationale for using a “social network framework”: Assess. Set goals. Measure outcomes (children and adults)
• Becoming familiar with Social Networks Inventory
• Experience with and examples of its use
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Handouts
Worksheets from Inventory Booklet
PDF of slides with references. Download at www.augcominc.com
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What is communication? At core of all human communication is the
creation of shared meaning between “interactants”
Clark, 1996; Gudykunst & Kim, 2003; Grove, Clibbens, Barnett & Loncke, F. (1998)
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Human communication is the joint establishment of meaning using a “socially
distributed ecology of public sign systems.”
(Wilkins, 2006; Wilkins & Higginbotham, 2005; Goodwin, 2003)
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Reframing our perspective
“We must shift our focus from the specific deficits of an individual.
It is conversations that are impaired, not the interactants.” Wilkins, 2004; Blackstone, Williams & Wilkins, 2008
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Why Social Networks and AAC?
4/25/2013
Widely used term to describe complex patterns of relationships (Kaczmarek, 2002). Originated in 1930s (Moreno)
Sociograms of individuals, groups, institutions
Interdisciplinary
Used in social and behavioral sciences
Employed by researchers to study interpersonal relationships
Provides way to map changes that matter to people in their daily lives
Access to social networks depends upon communication skills
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Uses graphics to help explain relationships
Adapted from McNair, J. (2004). A Discussion of Networks
Supporting Adults with Disabilities in the Community,
http://www.geocities.com/Athens/2926/4networks_article1.html
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Social Network of a student in a residential care facility. N=40
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nodes
Family visits
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http://www.pbs.org/saf/1108/teaching/teaching3.htm
Representing Social Networks- Bonzo the dog
Lowen, Panico & Jones 2004
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Circles of Communication Partners Adapted from Marsha Forest, Judith Snow, et. al.
2nd
1= Family 2=Friends 3=Acquaintances 4=Paid Workers 5=Unfamiliar partners
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family
friends acquaintances
Paid workers
Unfamiliar partners
• Definitions of groups
• # of people in each circle
• Total # of partners • Balance across
circles • What else?
Activity #1: Complete your own circles
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Social networks change over the lifespan.
Infancy & preschool
Third thirty
School years
Adulthood & middle years
What happens here underlies what happens here
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Social Network Framework and AAC assessmentGoals
4/25/2013
Requires thinking beyond traditional assessment protocols
Puts emphasis on communication and social participation NOT technology
Can help achieve outcomes that matter to people with CCN and their families
Consistent with widely accepted conceptual frameworks
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Conceptual Frameworks underlying SNs: A Communication Inventory…
Psycholinguistic theory
Circles of Friends/Communication Partners
ICF Model (World Health Organization)
Person-centered/Family-centered
Participation model (Beukelman/Mirenda)
Inclusion
Model of communicative competence (Light)
Authentic measurement / qualitative approach 4/25/2013 AGOSCI - Connect2Communicate May 2013 20
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“Individuals with chronic disabilities face unique threats & challenges; and they need robust social networks to support them so they can remain resilient and experience a high quality of life.”
(David Beukelman, ACN, 2003)
Sums it Up!
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Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and
their Communication Partners, 2012
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Introduction to Social Networks tool through Adrienne, Harold, Eric, Michael and Keith and their family, friends and others in their social networks
Ages 3 to over 65 years
Social Networks DVD (Attainment Company, 2004)
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Harold
3 yo CP Dysarthria CVI Cognition delays
Keith 9 yo CP Dysarthria Moderate cognitive delay
Eric 18 yo, Autism Apraxia Severe language impairment Mod cog delays/ behavioral challenges
Adrienne 24 yo CP Dysarthria Bilingual 2nd language Literacy issues
Michael 64 yo, CP Ms Library science Writer AAC/ disability rights activist
Social Networks Video
Emergent Context Dependent Independent
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How might you use the DVD?
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Sections I-III: Tells us who individual is and his/her current social networks
Sections IV-VII: Collects information on the communication methods, tools and strategies individual currently uses
Sections VIII-IX: Provides information about how individual uses different communication modes, tools and strategies across their social networks
Section X: Helps put information in one place to support goal setting
SN Inventory has 10 sections
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Who completes the CCP?
Social Networks is administered to .
1. Individual with CCN, if at all possible
2. Family member: 1st Circle
3. Professional (SLP/teacher): 4th Circle
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Some tips to remember…
•DON’T have to administer ALL. •DON’T have to complete in a session. •DON’T have to give sections in order. •DO have to follow instructions when
administering each section. •If you make changes, write down your
rationale. •Meant to be re-administered over time.
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Interviewer: Person asking questions
Reporter: Person answering questions
INTERVIEWER (uses the SN Manual)
Familiar with the SNs Inventory and how to administer each section
Have background in /understanding of communication and disability SLP, Teachers, Psychologist, OT
Could be other with expertise
REPORTER
Person with CCN, and
Family member of person with CCN, and
Professional working with person with CCN
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Pair Up Working together
Think of someone you know with a disability affecting communication (who
uses or could benefit from using AAC)
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Information obtained from SN
Identifying Information Skills and Abilities Circles of Communication
Partners Modes of Communication Representational
Strategies Selection Strategies Strategies that support
interaction Topics of Conversation Types of Communication Summary Sheets
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First….. Basic information
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1-3 yrs 4-10 yrs 11-22 yrs 22 – 50 yrs 51+ years
Developmental Disability
Acquired Disability/ Degenerative Condition
4/25/2013
What groups do you work with?
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Activity #2
Step 1. Identify important partners in each circle
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Step 2. Identify specific partners
& their circles
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Questions . . .
Are person’s circles balanced?
Would circles look different if informant was person? Family member? Some other professional?
Did CCP help identify any important issues? considerations?
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The most skilled partners are not always the person’s preferred partners
Communication Partners: Pilot data
Many individuals with complex communication needs do not spend most of their time with their most skilled partners
Many partners thought to be most willing to learn are not being taught
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Summary Sheet A
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Summary Sheet D
What circles might you target?
What reasonable goal(s) might address participation needs?
What reasonable goal(s) might be needed to address future communication needs?
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The Social Networks Tool Identifying Information Skills and Abilities Circles of Communication
Partners Modes of Communication Representational Strategies Selection Strategies Strategies that support
interaction Topics of Conversation Types of Communication Summary Sheets
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Skills and Abilities
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4/25/2013
ACTIVITY #3 – Assistive
Technology USAGE
Please fill this out quickly for your person
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Summary Sheet C
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The Social Networks Tool Identifying Information Skills and Abilities Circles of
Communication Partners
Methods of Communication
Representational Strategies
Selection Strategies Strategies that support
interaction Topics of Conversation Types of Communication Summary Sheets
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Methods of Expression Section
Step 1: Ask informant to identify ALL methods of expression that the person relies on
Step 2: Ask informant to identify PRIMARY methods for each circle
Step 3: Collect additional information about methods of expression
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Methods of Expression Defined in the SNs manual
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Identify primary method (s)
in each circle
• Non-linguistic
• Speech, writing, signs
• Non-electronic
• Electronic
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For methods person CURRENTLY
uses, ask about
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SGDs
Software/apps
Phone
Text
Video
Other
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Activity #4: 1. Identify all methods 2. Identify primary method for each circle
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Identify primary method (s)
in each circle
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People often have strong preferences for modes.
Attitudes about communication methods across different circles can influence success
DATA Strong Relationship between Methods
of Expression & Circles
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0
10
20
30
40
50
60
70
80
90
100
1st Circle 2nd Circle 3rd Circle 4th Circle 5th Circle
Gestures
Vocalizations
Speech
Sign
Light tech
VOCA
Primary Modes Across Circles: Pilot Data
Vocalizations
Gestures
Speech Sign
Light tech
High tech
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Germany, Wachsmth & Schmidt, 2010
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0
2
4
6
8
10
12
14
16
most of the time sometimes rarely never
Modes : Frequency of Use
facial expressions/body language gestures
vocalizations speech
writing/drawing nonelectronic
simple VOCA complex VOCA
communication software
The Bridge School Hunt Berg, 2005
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# of partners Primary mode: gestures
# of partners Primary mode: Vanguard
# of partners Primary mode: vocalizations
KEITH
# of partners Primary mode: gestures
# of partners Primary mode: gestures
Vocalizations, sign Complex VOCA
Gesture, sign Complex VOCA
VOCA, fac exp signs
gestures signs Fac expression, vocalization
Complex VOCA
x
X X
X X
X X
X
x
Summary Sheet B
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Goals:
Do any goals emerge as a result of the modes section?
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Examples of how section may influence goal setting/intervention planning
Only uses SGD
in 4th circle
Use telephone to call grandma 2x month using SGD
Use SGD to order donuts in bakery 2x week
Wants to keep a
diary.
Use wd processing with prediction. Develop plan to ensure privacy.
Gestures are not
understood
Target 2 gestures. Improve intelligibility with 2 people in 3rd circle.
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4/25/2013
Questions or comments
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Lunch Break Return at 1 p.m.
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Musings of a Multi-Modal Man
Michael B. Williams,
Author, Editor, Speaker
ISAAC EC, USSAAC President, Alternatively Speaking, AAC-RERC partner
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How might you use the DVD?
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The Social Networks Tool Identifying information Skills and abilities Circles of
communication partners
Modes of communication
Representational strategies
Selection strategies Strategies that support
interaction Topics of Conversation Types of Communication Summary Sheets
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Representational Strategies
Activity #5 Step #1: Identify
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Step #2: Frequency Effectiveness Intelligibility
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Access/Selection Techniques
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Skills and Abilities Further Assessment
Representational Strategies
Selection techniques
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Goals:
•What type of goals might goals emerge from sections on
•Representational Strategies
•Selection Techniques
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The Social Networks Tool
Identifying Information Skills and Abilities Circles of Communication
Partners Modes of Communication Representational
Strategies Selection Strategies Strategies that support
interaction Topics of Conversation Types of
Communication Summary Sheets 4/25/2013 AGOSCI - Connect2Communicate May 2013 69
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Types of Communication (Dr. Patricia Dowden, University of Washington)
Emergent Context Dependent Independent
No reliable method of symbolic communication
Gestures, vocalizations, body language Limited contexts limited partners
Use symbolic and nonsymbolic modes with success. Success limited to contexts, partners or activities Perhaps only familiar partners understand; others must supply vocabulary; person has limited language. Limited contexts/ limited partners to multiple contexts/ multiple partners
Can interact with both familiar and unfamiliar partners about any topic in any context
Literate. Communicates novel messages independently May not always choose to be independent
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Intervention Goals: Emerging, Context-Dependent, Independent
Context-Dependent Independent
No reliable symbolic communication
Reliable symbolic communication
Limited vocabulary All topics
Limited partners All partners
Limited contexts All contexts
Emerging
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Emerging? Context
Dependent? Independent?
4/25/2013
How many?
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A life-long continuum Emerging Context-dependent Independent
Increase access to vocabulary Decrease dependence on others Develop literacy skills Expand # and types of communication partners Increase access to topics Increase access to methods of communication
I.D. reliable means of expression Increase opportunities for interactions beyond 1st & 4th circles
Increase speed of communication Refine social interaction skills Provide access to 5th circle/independence/ social media, etc.
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Emergent, Context Dependent, Independent
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What kind of communicator have you and your partner been thinking about?
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The Social Networks Tool
Identifying Information Skills and Abilities Circles of
Communication Partners Modes of
Communication Representational
Strategies Selection Strategies
Strategies that support interaction
Topics of Conversation Types of Communication Summary Sheets
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4/25/2013
Strategies that support interaction
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Strategies that support Expression
Verbal and physical prompts
Pause/delay
Acting dumb
First sound
Carrier phrases
Communication displays/devices
Mobile devices with apps
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iPad and iPod apps examples
Taptotalk
First Then
Magia Palabras
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Strategies that support Comprehension
Comprehension Augmented input Aided language stimulation Schedules within/ between
activities Rate of speech Social stories Setting up the
environment of succes
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Skills and Abilities Further Assessment
Represent. strategies Selection techniques
Strategies: Expression Strategies: Comprehension
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Goals:
Do any goals emerge from this section?
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Teach ‘closed fist’
strategy to classmates
and teachers
Use at least 5 times daily when
trained to provide choices and
chances to make comments.
[Limited use of “quick and
dirty” interaction strategies.]
Set up within activity
visual supports to
decrease dependence
on prompting
During art and cooking, replace
direct prompts with visual
supports to increase
independence. Try making flip
books or velco schedule
How does Strategies section help with
goal setting/intervention planning?
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The Social Networks Tool Identifying Information Skills and Abilities Circles of
Communication Partners
Modes of Communication
Representational Strategies
Selection Strategies Strategies that support
interaction Topics of
Conversation Types of Communication Summary Sheets
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Topics of conversation
What does person talk about with partners in each circle?
What would person MOST like to talk about with partners in each circle?
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Activity # 6
4/25/2013
Step 1: What topics does person use with primary communication partners?
Step 2: What topics would person most like to use with primary communication partners?
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Setting topics
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Team doesn’t know
what person would
most like to talk
about.
Observe, discuss areas of interest
and consider providing
vocabulary accordingly. Find
ways to familiarize partners with
topics.
Topics at home are
very different from
topics at work. Need
more vocabulary
Complete vocabulary inventories
of favorite topics in both
locations. Modify SGD and low-
tech displays accordingly
How does Topics section help with
goal setting/intervention planning?
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Skills and Abilities Further Assessment
Represent. strategies Selection techniques
Strategies: Expression Strategies: Comprehension
Topics: Current Topics: Desired
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Examples
BREAK
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• Multimodal communicator
• Variety of strategies that support expression
• Skilled, familiar communication partner
• Think about possible goals and objectives
Katie –The Bridge School
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K. is 11 years old & in the 4th grade.
• Diagnosis: Cerebral palsy & ataxia
• Lives with Grandparents
• Academic skills range from mid-1st grade to 3rd grade level
• Receptive language (measured) at 5 yr-6mo level
• Reading at 1st grade level
• Loves talking about babies, “girlie” things, TV shows & DVDs
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Methods of expression
• Facial expression/body language • Gesture • Vocalizations • Manual signs • Non-electronic communication overlays • Simple VOCA: 2-step encoding • Complex VOCA: scanning, 2 head switches
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Modes, Partners, Strategies
How does Katie communicate? What communication methods does she use? What are her preferred modes?
What representational strategies does she use?
What selection strategies?
How does her partner support Katie’s
participation in this interaction? Supporting expression? Supporting comprehension?
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Intervention Planning
•How would you expect her to be communicating in future years?
•With whom would she need to communicate in future years?
•What are some AAC goals you might suggest? Why?
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Goals
Use gestures & manual signs with teachers •Baseline-these are primary modes at home; partners at school need training, don’t always understand her signs
Initiate interactions with peers using complex VOCA (pre-programmed partner focused questions)
•Baseline - Rarely initiates interactions with classmates •Peers not familiar with her other modes •Katie wants to get in on the act with the girls in her class
Actively participate in conversations with friends at school who know how to present choices & support Katie’s use of overlays with 2-step encoding
•Baseline- Katie wants 2 of her good friends to learn how to use her overlays because it is one of her preferred modes.
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Activity #7
4/25/2013
1. Develop two goals. Target two different circles.
2. Brainstorm how achieve these goals. How will you measure outcomes?
Group will give helpful feedback re: how to accomplish
goals and measure outcomes AGOSCI - Connect2Communicate May 2013 98
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1-3 yrs 4-10 yrs 11-22 yrs 22 – 50 yrs 51+ years
Developmental Disability
Acquired Disability/
Degenerative Condition
4/25/2013
Here today?
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Mr. R Juli Trautman Pearson, Duke University Medical Center
67 year old man with aphasia (6 years post)
Not interested in using technology
Dependent on wife to interpret
Wanted ways to increase participation in enjoyable activities
Wife wanted more freedom to do what she enjoyed
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SN of adults with acquired disabilities and their families
Communication partners issues (hearing, vision, cognition, time, nature of relationships)
Often a significant impact on spouse, other family members
Mixing/shifting roles Spouse - primary caregiver/AAC facilitator PCA – friend, family member
David R. Beukelman, 2006
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Assessment and intervention process
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Traditional therapy not addressing needs of SR and/or his wife
Initial solution (AAC device) not used
Use of Social Networks identified circles, modes, preferences, supports and intervention plan
Outcomes after 1 year: impressive
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Communication goals
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1. Use adapted camera to take pictures and interact with people in 2nd & 3rd circles.
Baseline: No use of camera. Minimal use of photos in aphasia group. Difficulty interacting in group.
2. Develop and use gesture dictionary with three additional caregivers. Baseline: Only wife and primary nurse understood Mr. R’s gestures.
3. Train partners to support Mr. R’s interactions at church and at his local model train group. Baseline: Interactions minimal at church. No longer attended the model train group.
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Circle 1Family
Circle 2Friends
Circle 3Acquaintances
Circle 4Paid Workers
Circle 5Strangers
Initial number ofpartners (January 2003)
17 2 8 4 2
Current number ofPartners (January 2004)
18 6 15 5 6
Change in number ofPartners (January 2004)
+1 +4 +7 +1 +4
Increased # and balance of partners across circles
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Mrs. R as
interpre-
ter
Photo
gesture
library
Trained
partners
Photos
taken by
Mr. R
Facial
express-
ions
Phone
Vocaliza-
tions
Manual
signs
(5-10)
Speech
(6-
20wds)
Gestures
Laser
pointer
Modes
in use
Initial Modes Additional Methods
Increase in
• Topics
• Strategies for
interaction
Quality of life
4/25/2013
Increase in methods of communication being used
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Outcomes
4/25/2013
• Exceeded all communication goals.
• Relies on wider range of methods
• Uses photos to interact with friends and acquaintances.
• Circles – more balanced.
• Has more partners who support his efforts to communicate
• Is more independent
• Has more successful communication exchanges
• Wife spends more time with her friends.
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1-3 yrs 4-10 yrs 11-22 yrs 22 – 50 yrs 51+ years
Developmental Disability
Acquired Disability/
Degenerative Condition
4/25/2013
Here today?
AGOSCI - Connect2Communicate May 2013 109
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Take Aways
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While SNs are dynamic, the need for membership in social circles is persistent and inherent to being
human
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Social networks are ALWAYS limited without access to effective
communication
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Evidence shows that
Strong social networks result in better
Health
Quality of life
Employment
Acquisition of competencies (e.g. educational success, social skills)
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Social Networks Inventory
The essence of navigation is knowing one’s position, direction
and speed.
Of these, position is hardest to find, but, once obtained,
direction and speed become more obvious.
(Royal British Columbia Natural History Museum, Victoria, B.D.)
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Position: Where we are? Destination: Where we need to go? Direction: How we will get there? Speed: How fast we will go? It also can help tell us…DID WE GET THERE?
Social Networks is a tool that helps identify
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"You've got to be very careful.. . If you don't know where you're going, you might not get there." Yogi Berra
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Some tips to remember…
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•DON’T have to administer ALL. •DON’T have to complete in a session. •DON’T have to give sections in order. •DO have to follow instructions when
administering each section. •If you make changes, DO write down
your rationale for doing so. •Meant to be re-administered over time.
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I went to a bookstore and asked the saleswoman, "Where's the self-help section?" She said if she told me, it would defeat the purpose.
Social Networks doesn’t substitute for expertise of team members
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Thank you
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Skills and Abilities Further Assessment
Represent. strategies Selection techniques
Strategies: Expression Strategies: Comprehension
Topics: Current Topics: Desired
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Emergent, Context Dependent, Independent
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REFERENCES & RESOURCES
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References & Resources (cont.)
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Resources (cont.)
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