Making a World of Difference: The ICF-CY as a Tool for Building Global Communities of AAC Providers

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Making a World of DifferenceThe ICF-CY as a
Tool for Building Global Communities of AAC
Providers

• ISAAC, Barcelona, Spain
• July 27, 2010

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Sharon M. Rogers, Ph.D., CCC-SLP

• Adjunct Faculty in AAC
• California State University Fullerton
• SMRsp_at_aol.com
• www.drsharonrogers.com

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International Classification of Functioning,
Disability, Health
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ICF Classificationsand 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)

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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.

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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.

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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)

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ICF-CY Team Member

• Mats Granlund
• Professor in Psychology at Jönköping University,
  School of Health Science,
• Swedish Institute for Disability Research
• Researcher

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ICF-CY Team Member

• Included ASHA representative Travis Threats,
  Saint Louis University
• InternationalWorld Health Organization (2006)
• Classifications adopted by ASHA, physical and
  occupational therapists

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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
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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

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Participation Matters

• Limited participation often is due to cultural
  myths and negative attitudes about competence.
• Societys accumulated myths and fears about
  disability are as handicapping as are the
  physical limitation from actual impairment.
  (Brennan, 2007)

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Environmental Factors Matter

• Products and technology (for communication)--avail
  ability of AAC
• Natural environment and human made changes
• Personal support and relationships
• Attitudes toward AAC
• Services, systems and policies in physical
  environment

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Social Model Matters

• Each function in the childs cultural development
  appears twice
• 1st on the social level and
• later on the individual level
• 1st between people and
• then inside the child. (Vygotsky)

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Personal Factors Matter

• Age
• Gender
• Interests/Motivation/
• preferences
• Family-beliefs
• Culture -- including unique stories,
  self-confidence, and experience with
  communication failure

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ICF-CY Case Study

• Body Structure
• Body Function
• ActivityParticipation
• Environment
• Tools
• Support
• Personal Factors

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Previous Focus on Body Functions and Structures

• Educator
• Medical--school nurse
• Physical therapist
• Occupational therapist
• Speech language pathologist

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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.

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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.

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Nurses 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.

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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.

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Occupational TherapyReport

• 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.

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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.

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What Difference Would ICF-CY make?
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ICF-CY Body Structures

• Eyes, ears within normal limits
• Voice and Speech mechanism
• trachestomy
• Nervous system-progressive motor neuron
  degeneration

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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
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ICF-CY Body Functions
Cardiovascular/ digestive/ neuromuscular/ skeletal Spinal muscular atrophy Feeding tube, Spinal rod, Head support
Oxygen with ventilator every 4 hours
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What Does ICF-CY Add?

• Activities and Participation -- social
• Environment -- technology, support, services
• Personal factors -- motivation, cultural
  influences

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ICF-CY Provides

• Common language for AAC providers
• For improved collaboration among team members
  including parents and caregivers
• Integrated instruction across environment

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ICF-CY FactorsEnvironment 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

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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?

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ICF-CYActivities/Environment at School

• Activities and Participation--social
• Environment for AAC
• Tools
• Support personnel
• Location of tools, position with peers
• Expectations

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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

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ICF-CY Personal Factors

• Interests
• Shopping
• Art work with pen
• Fashion design
• Lab pathologist
• Contribute to society
• write for school yearbook.
• Cultural considerations

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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

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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

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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

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Environmental Support Educator

• She teaches me to ask the right questions.
• Mr. Buck, math teacher

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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, Joelles Mother

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Environment Support Community

• Joelle is treated as a rock. She is scenery to
  many. It breaks my heart.
• Jane, Joelles Mother

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ICF-CY Personal FactorsInfluencing Her AAC use

• Motivation
• Family values including participation in
  religious services, family gatherings, friends
  invited for sleepovers
• Cultural considerations.

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ICF-CY--Her AttitudesInfluencing AAC Use

• I want to be on the yearbook staff
• (1) to have fun
• (2) to use my talents
• (3) to serve my school.
• Joelles written application

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ICF-CY includesActivities/Participation

• Communication producing
• At home
• At school
• Self Care
• Interpersonal interaction-community

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ICF-CY IncludesEnvironment/Social

• Tools/products/technology
• Low technology
• High technology
• Support and relationships

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Ideas/Goals for Joelle

• Technology to try
• Goals for success with AAC --educational
  standards
• Collaboration across environments

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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 subjects
  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.)

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ICF-CY and AACSummary

• Body functions --nonverbal
• Body structures
• Activities and Participation
• Environment -- technology tools, support,
  services
• Personal factors -- age, gender, interests,
  motivation, culture

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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

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ICF-CY Codes Further Refine Environmental/Social

• (plus) facilitating opportunities
• - (minus) barriers to participation

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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

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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

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International Classification of Functioning,
Disability Health
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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

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ICF-CY and AAC Assessment

1. Interview communication partners for descriptions
   and activities
2. Video tape across environments
3. Generate hypotheses for assessment--activities
   for participation, tools, supports, interests
4. Conduct and videotape assessment
5. Summarize using ICF-CY classifications
6. Collaborate on goals and instructional strategies
   for increased participation

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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)

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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 dont like a person
• Ignore them, think theyre just curious
• Want them to accept me for what I am, I accept
  them for who they are

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ICF-CY Participation in Sharing Information

• Interpret nonverbal communication
• I show I understand when I raise my eyebrows
• Say I dont know when I raise my eyebrows and
  hold them up.
• Show I know names of people, actions, places when
  I write, talk, read about

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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

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ICF-CY and AAC AssessmentEnvironment/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)

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ICF-CY Making a Difference Instruction Goals

• Participation is goal
• In Social interaction
• In Sharing information
• In Expressing unique identity

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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.

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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 Ill give you a little time
  and come back later.
• Response to looking away I dont like that
  person
• I understand some of how you feel. Lets figure
  out what you dont like. Where shall we begin?

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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. Lets move onto the next question.
• Response to raising eyebrows and holding them up
  to say I dont 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?

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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.

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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

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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

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Its All Yours Making a World of Difference