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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

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ISAAC, Barcelona, Spain July 27, 2010

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    1. Making a World of Difference:The ICF-CY as a Tool for Building Global Communities of AAC Providers ISAAC, Barcelona, Spain July 27, 2010

    2. Sharon M. Rogers, Ph.D., CCC-SLP Adjunct Faculty in AAC California State University Fullerton

    3. International Classification of Functioning, Disability, Health

    4. 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)

    5. 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.

    6. 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.

    7. 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)

    8. ICF-CY Team Member • Mats Granlund • Professor in Psychology at Jönköping University, School of Health Science, Swedish Institute for Disability Research • Researcher

    9. 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

    10. ICF-CY Classifications and AAC

    11. 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

    12. 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)

    13. 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

    14. 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)

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

    16. ICF-CY Case Study • Body Structure • Body Function • ActivityParticipation • Environment • Tools • Support • Personal Factors

    17. Previous Focus on Body Functions and Structures • Educator • Medical--school nurse • Physical therapist • Occupational therapist • Speech language pathologist

    18. 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.

    19. 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.

    20. 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.

    21. 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.

    22. 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.

    23. 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.

    24. What Difference Would ICF-CY make?

    25. ICF-CY Body Structures • Eyes, ears within normal limits • Voice and Speech mechanism • trachestomy • Nervous system-progressive motor neuron degeneration

    26. ICF-CY Body Functions

    27. ICF-CY Body Functions

    28. What Does ICF-CY Add? • Activities and Participation -- social • Environment -- technology, support, services • Personal factors -- motivation, cultural influences

    29. ICF-CY Provides: • Common language for AAC providers • For improved collaboration among team members including parents and caregivers • Integrated instruction across environment

    30. 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

    31. 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?

    32. ICF-CYActivities/Environment at School • Activities and Participation--social • Environment for AAC • Tools • Support personnel • Location of tools, position with peers • Expectations

    33. 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 Activities Participation with AAC Use

    34. Interests Shopping Art work with pen Fashion design Lab pathologist Contribute to society write for school yearbook. Cultural considerations ICF-CY Personal Factors

    35. 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 ICF-CY Environmental Factors

    36. 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

    37. 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

    38. Environmental Support: Educator • She teaches me to ask the right questions. ~Mr. Buck, math teacher

    39. 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

    40. Environment Support: Community • Joelle is treated as a “rock.” She is scenery to many. It breaks my heart. ~Jane, Joelle’s Mother

    41. ICF-CY Personal FactorsInfluencing Her AAC use • Motivation • Family values including participation in religious services, family gatherings, friends invited for sleepovers • Cultural considerations.

    42. 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. ~Joelle’s written application

    43. ICF-CY includesActivities/Participation • Communication producing: • At home • At school • Self Care • Interpersonal interaction-community

    44. ICF-CY IncludesEnvironment/Social • Tools/products/technology • Low technology • High technology • Support and relationships