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 SMRsp@aol.com www.drsharonrogers.com.
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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 SMRsp@aol.com www.drsharonrogers.com
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)
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
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, self-confidence, 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 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.
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.
ICF-CY Body Structures • Eyes, ears within normal limits • Voice and Speech mechanism • trachestomy • Nervous system-progressive motor neuron degeneration
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 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
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-CYActivities/Environment at School • Activities and Participation--social • Environment for AAC • Tools • Support personnel • Location of tools, position with peers • Expectations
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
Interests Shopping Art work with pen Fashion design Lab pathologist Contribute to society write for school yearbook. Cultural considerations ICF-CY Personal 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 ICF-CY Environmental Factors
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 FactorsInfluencing Her AAC use • Motivation • Family values including participation in religious services, family gatherings, friends invited for sleepovers • Cultural considerations.
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
ICF-CY includesActivities/Participation • Communication producing: • At home • At school • Self Care • Interpersonal interaction-community
ICF-CY IncludesEnvironment/Social • Tools/products/technology • Low technology • High technology • Support and relationships