Transcript The ICF-CY as a Tool for Building

Making a World of
Difference:
The ICF-CY as a Tool for
Building Global Communities
of AAC Providers
ISAAC, Barcelona, Spain
July 27, 2010
Sharon M. Rogers, Ph.D., CCC-SLP
Adjunct Faculty in AAC
California State University Fullerton
[email protected]
www.drsharonrogers.com
International Classification of
Functioning, Disability, Health
ICF Classifications
and Codes
 Functioning and Disability
 Body Functions (b110-b899)
 Body Structures (s110-s899)
 Activities and Participation (d110-d999)
 Contextual and Personal Factors
 Environmental products/Technology,
support, services, attitudes (e110 to e599)
 Personal (not yet coded)
ICF Focus on Health
 Health is
Physical
Mental
Social well being
Overall quality of life
 Health increases capacity
to live a full life and
develops individuals
economically and socially.
WHO -- Need for ICF-CY
 Consequences of diseases/diagnosis were not
predictable in functioning and unidirectional.
 Different diagnosis but common communication
needs.
 Quality of life more dependent on multiple
factors, including social interaction, than on
body function and body structures only.
 Children and youth are developing i.e.
language acquisition.
C (Children) and Y (Youth)
 Bates in 1976 (Hyter, 2007) wrote,
Surely it has been true all along that the
only real “language acquisition device”
is the whole child growing up in a
social world. (p. 128)
ICF-CY Team Member
 Mats Granlund
 Professor in Psychology
at Jönköping University,
School of Health
Science,
Swedish Institute for
Disability Research
 Researcher
ICF-CY Team Member
 Included ASHA
representative
Travis Threats, Saint
Louis University
 International=World
Health Organization
(2006)
 Classifications
adopted by ASHA,
physical and
occupational
therapists
ICF-CY Classifications and AAC
Who?
Individual Body Functions, Body Structures,
Personal Factors -- AAC topics
What?
Activity/Participation with augmenting and
having alternative communication
How?
Environment includes technology, support,
services, systems, attitudes thus AAC
When?
Today and tomorrow
Where?
Across environments -- AAC opportunities and
barriers home, school, community
Why?
Quality of life improves with Participation
Combines
Bio-Psycho-Social Models
 Biology represented in Body Structures
 Psychological described in Body
Functions
 Social Activities and Participation
 Social Context/Environmental
Technology for AAC
 Social Context identify Personal Factors
Participation Matters
 Limited participation often is due to
cultural myths and negative attitudes
about competence.
 Society’s accumulated myths and fears
about disability are as handicapping as
are the physical limitation from actual
impairment. (Brennan, 2007)
Environmental Factors
Matter
 Products and technology (for
communication)--availability of AAC
 Natural environment and human made
changes
 Personal support and relationships
 Attitudes toward AAC
 Services, systems and policies in
physical environment
Social Model
Matters
 Each function in the child’s
cultural development appears
twice
1st on the social level and
later on the individual level
1st between people and
then inside the child.
(Vygotsky)
Personal Factors
Matter
 Age
 Gender
 Interests/Motivation/
preferences
 Family-beliefs
 Culture -- including
unique stories, selfconfidence, and
experience with
communication failure
ICF-CY Case Study
 Body Structure
 Body Function
 ActivityParticipation
 Environment
 Tools
 Support
 Personal Factors
Previous Focus on Body
Functions and Structures
 Educator
 Medical--school nurse
 Physical therapist
 Occupational therapist
 Speech language pathologist
Educational Report--Part 1
 Joelle is a 12 year old female who qualifies
for special education services due to a
neuromuscular impairment and severe
orthopedic disability. She continues to
qualify for low incidence funding. Physical
support is required for Joelle to succeed in
the general education class setting.
Educational Report--Part 2
 Health: Good health overall, diagnosis
Werdnig-Hoffman syndrome. Uses
motorized wheelchair for mobility. Snellen
Distance Activity 20/40 with glasses,
normal bilateral hearing
 Academics: Reading, writing above grade
level, math at grade level. Expressive
communication: uses eye gaze, eyebrows,
and hands to write.
Nurse’s Report
 Joelle is 12 year old female. Height and weight
within normal limits. Blood pressure good.
 Tracheostomy requires frequent suctioning.
 Ventilator and oxygen every 4 hrs. respiratory care.
 Gastrotomy tube for feeding at noon.
 Medications at school Tylenol and Albuterol as
needed.
Physical Therapy Report
 Joelle operates motorized wheelchair with
joystick. Movement of legs and arms
approximately 2 inches.
 Support while sitting with bands at head,
chest, and hips.
 Spinal rod in place.
Occupational Therapy
Report
 Hand use: Right hand. Range of motion
limited to 6 inches. She holds pencil or
roller pen with index and third fingers on
right hand to write. These fingers access
2 light touch switches on computer for
typing with Morse code.
 Left hand: Palm rotates track ball to
control computer mouse. Left hand
grasps styrofoam meat tray as writing
surface.
Speech Language
Pathology Report
 Joelle is learning to use speech
generating device. She is able to access
programmed files but often does not use
speech generating device for daily
communication.
 Goal: Joelle will use speech generating
device to greet peers and teachers 5x
daily, ask questions 3x daily, make
comments 3x daily, request nurse
assistance as needed.
What Difference
Would ICF-CY make?
ICF-CY Body Structures
Eyes, ears within normal limits
Voice and Speech mechanism
trachestomy
Nervous system-progressive motor neuron
degeneration
ICF-CY Body Functions
Learning and applying knowledge:
Reads and writes
Sensory:
Wears glasses, hearing good
Movement:
Right hand dominant
Limited use of limbs
Joystick used to direct wheelchair
Voice and Speech:
Vocalizations limited due to weak breath support
Receiving communication, excellent
Producing communication
--50% intelligibility with familiar partners
--nonverbal communication with eyes and eyebrows
ICF-CY Body Functions
Cardiovascular/ digestive/ neuromuscular/
skeletal
Spinal muscular atrophy
Feeding tube,
Spinal rod,
Head support
Oxygen with ventilator every 4 hours
What Does ICF-CY Add?
 Activities and Participation -- social
 Environment -- technology, support,
services
 Personal factors -- motivation,
cultural influences
ICF-CY Provides:
 Common language for AAC providers
 For improved collaboration among team
members including parents and caregivers
 Integrated instruction across environment
ICF-CY Factors
Environment at Home
 What to look for in video:
 Body Structures
 Body Functions
 How does Joelle produce communication?
 % intelligible
 Activities and Participation
 Environment-context for AAC
 Tools
 What high and low technology does she use?
 Support--Who is supportive? What services provided?
 Nurse monitor temperature, feeding, medication
 Personal factor--Motivation/interests
QuickTime™ and a
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QuickTime™ and a
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ICF-CY Descriptions
 Body functions: How does Joelle produce
communication? % intelligible
 Activities and Participation she enjoyed
 Environment/Social: What tools does she have
to write? What accommodations?
 Environment/Social: Who are her supports?
 Environment-Personal: What motivates her?
What are interests?
ICF-CY
Activities/Environment
at School
 Activities and Participation--social
 Environment for AAC
Tools
Support personnel
Location of tools, position with peers
Expectations
ICF-CY Activities
Participation with AAC Use
 Acquiring concepts
 General education curriculum
 College preparation
 Reading/writing/calculating
 Reads at grade level
 Likes romance novels
 Wrote 36 page paper on American Colonies
 Algebra challenging
ICF-CY Personal Factors
 Interests
 Shopping
 Art work with pen
 Fashion design
 Lab pathologist
 Contribute to society
 write for school yearbook.
 Cultural considerations
ICF-CY
Environmental Factors
 Tools: augment nonverbal
 Computer with switch access
 AAC--Speech generating device
 Attitudes
 Support across environments
 Services, policies:
 Full inclusion
 Assistive Technology
 Access to home computer
Who Makes a Difference
in Her AAC Use?
 Family -- parents, sibling, extended
family
 Medical staff -- nurses, doctors
 Friends and classmates
 Educators -- including paraprofessional,
bus driver
 Speech language pathologist
 Occupational therapist
Environmental Support:
Caregiver
 I could go around the world 6 times,
take every course offered at a
university and still not learn as
much about life and about God as I
have from Joelle.
~Suzanne, Nurse
Environmental Support:
Educator
 She teaches me to ask the right
questions.
~Mr. Buck, math teacher
Environmental Support:
Parent
 I wish I were a millionaire. I never
wanted money before. I need say
$35,000 a month then I could get
things done for my daughter in a
timely manner.
~Jane, Joelle’s Mother
Environment Support:
Community
 Joelle is treated as a “rock.” She is
scenery to many. It breaks my
heart.
~Jane, Joelle’s Mother
ICF-CY Personal Factors
Influencing Her AAC use
 Motivation
 Family values including
participation in religious services,
family gatherings, friends invited
for sleepovers
 Cultural considerations.
ICF-CY--Her Attitudes
Influencing AAC Use
 I want to be on the yearbook staff
(1) to have fun
(2) to use my talents
(3) to serve my school.
~Joelle’s written application
ICF-CY includes
Activities/Participation
 Communication producing:
 At home
 At school
 Self Care
 Interpersonal interaction-community
ICF-CY Includes
Environment/Social
 Tools/products/technology
 Low technology
 High technology
 Support and relationships
Ideas/Goals for Joelle
 Technology to try
 Goals for success with AAC --
educational standards
 Collaboration across environments
Educational Standard
Participation with AAC
Goal and Standard 8.2.1 Listening and Speaking
 Deliver narrative presentations (e.g.
biographical, autobiographical)
a.Relate a clear, coherent incident, event, or situation by
using well-chosen details
b.Reveal the significance of and the subject’s attitude about
the incident, event or situation.
c. Employ narrative and descriptive strategies (e.g. relevant
dialogue, specific action, physical description,
background description, comparison or contrast of
characters.)
ICF-CY and AAC
Summary
 Body functions --nonverbal
 Body structures
 Activities and Participation
 Environment -- technology tools,
support, services
 Personal factors -- age, gender,
interests, motivation, culture
ICF-CY Codes (b,s,d,e)
Further Refine Categories
Levels of Participation affected by Body
Functions
 no difference, 0-4% of time
 5-24% of time makes a difference
 25-49% of time makes a difference
 50-95%% of time makes a difference
 96-100% of time
ICF-CY Codes Further
Refine Environmental/Social
+ (plus) facilitating opportunities
- (minus) barriers to participation
ICF-CY Qualifiers
Further Refine Participation
Mild to profound
 Performance: how person does in their
natural environment
 Capacity without assistance -- how person
does in clinical setting without assistance
 Capacity with assistance –- how person does
in clinical setting with assistance
 Performance without assistance -- how
person performs in environment without
assistance
ICF-CY
Makes a Difference
 Assessment for AAC
 Collaborate to describe body functions
 Look for shared activities and participation
 Discover personal factors-motivation
 Try tools of AAC (low and high technology)
 Instruction for AAC
 Goal writing -- collaboration for increase
participation
 Instruct across environments
 Measure by participation
International Classification of
Functioning, Disability Health
ICF-CY: A Common
Language for Assessment
Common language across disciplines and
cultures to
 Describe human functioning in activities
 Describe disability as participation in activities
 Focus on participation to increase quality of
life across communication partners and
environments
ICF-CY
and AAC Assessment
1. Interview communication partners for
2.
3.
4.
5.
6.
descriptions and activities
Video tape across environments
Generate hypotheses for assessment-activities for participation, tools,
supports, interests
Conduct and videotape assessment
Summarize using ICF-CY classifications
Collaborate on goals and instructional
strategies for increased participation
ICF-CY Interviews
Describe Body Functions




Communication receiving--speech, line drawings
Communication producing-intelligibility
Interpersonal relationships
Interpret nonverbal language use by parents,
educators, and SLP
Hearing Them Into Voice protocol,
Communication Partners’ Response, Measure of
Functional Communication
(www.drsharonrogers.com)
ICF-CY Participation
in Social Interaction
 Interpret nonverbal communication
 I show “I like you, you are my friend”
Ask or “say it,” “give a hug”
 I protest
Say “no,” scream
 I show I don’t like a person
“Ignore them,” think they’re just curious;
“Want them to accept me for what I am, I
accept them for who they are”
ICF-CY Participation
in Sharing Information
 Interpret nonverbal communication
I show I understand when I “raise my
eyebrows”
Say I don’t know when I “raise my
eyebrows and hold them up.”
Show I know names of people, actions,
places when “I write, talk, read about”
ICF-CY Participation in
Expressing Unique Identity
 Interpret nonverbal communication
I may want to talk about
What I may choose to do in free time
Bertha, my best friend
Big things I contribute to others
People see that kids with disabilities can
do things with a little help
ICF-CY and AAC Assessment
Environment/Social
 Try assistive technology
 Speech generating
devices
 Low tech
 Learn about support
and relationships
 Discover attitudes and
expectations of family
and community
 Outline services,
systems,& policies
(funding)
ICF-CY Making a Difference
Instruction: Goals
 Participation is goal
In Social interaction
In Sharing information
In Expressing unique identity
ICF-CY Making a Difference
Instruction for Communication
 Help communication partners learn to respond
 Choose topics that are age and gender appropriate,
i.e. peer activities and general education
curriculum
 Build on social engagement (peer assisted learning)
and personal motivation
 Engage in real time, place and purpose
(naturalistic environments)
 Instruct reading and writing with AAC for creating
messages.
Communication Partners Learn
to Respond to Nonverbal
 Social interaction
 Response to producing hug meaning “I like you”
 You do like me. I like you too. Think of all the
people you love
 Response to screaming meaning “leave me
alone”
 You told me “no.” So I’ll give you a little time and
come back later.
 Response to looking away “I don’t like that
person”
 I understand some of how you feel. Let’s figure out
what you don’t like. Where shall we begin?
Communication Partners Learn
to Respond to Nonverbal
 Sharing information
 Response to raising eyebrows to say I understand. You
raised your eyebrows so I know you understand. Let’s
move onto the next question.
 Response to raising eyebrows and holding them up to
say “I don’t understand.” You told me you did not
understand by raising your eyebrows and holding them,
shall I explain the question using other words?
 You just wrote about interesting people and places. I
love what you wrote. Where else can we find to hear
more about these?
Communication Partners Learn
to Respond to Nonverbal
 Expressing Unique Identity
 You just said “b” Do you want to talk
about your friend, Bertha. Was it
something that happened today? What
would you like to tell me about her?
 Your comment is so perceptive. You do
make such a difference to me too. You
once told me that if I was not your
daughter, you would suffer. You are right.
Instruction for
Communication with AAC
 Teach accessible low and high
technology on topics of interest with
different communication partners
 Anticipate as a team participation
opportunities/reduce barriers of using
AAC
ICF-CY Making a Difference:
Measure Changes
 Of Participation with AAC in
 Social interaction
 Sharing information
 Expressing unique identity
 Measure of Functional Communication
also at www.drsharonrogers.com
 Goal Attainment Scale from -2 to +2
It’s All Yours:
Making a World of Difference