ICF-CHILDREN & YOUTH

1. ICF-CHILDREN & YOUTH Donald J. Lollar, Ed.D. Centers for Disease Control & Prevention National Center on Birth Defects & Developmental Disabilities Atlanta, Georgia USA

2. Presentation overview • Place ICF-CY in the context of W.H.O. classifications—ICD and ICF • Identify contribution of ICF/ICF-CY to documentation in public health and services to children and youth • Describe applications in documentation with children • Identify continuing issues in application of ICF/ICF-CY in assessment and intervention

3. ICD HISTORY • 1853 FIRST INTERNATIONAL STATISTICAL CONGRESS • FIRST UNIFORM CLASSIFICATION OF CAUSES OF DEATH-INTERNATIONAL CAUSES OF DEATH (ICD) • TWO COMPETING APPROACHES • 1855 CONGRESS ENTERTAINED BOTH SETS • WILLIAM FARR USED ANATOMICAL SITES AS BASIS • MARC d’ESPINE USED NATURE OF DISEASE (GOUTY, HERPETIC, HEMATIC) • INITIAL COMPROMISE--186 RUBRICS • 20 YEARS TO RECONCILE THE DIFFERENCES—FARR WON • NOW ICD REVISED ABOUT EVERY DECADE—HENCE ICD-10

4. ICD/ICF HISTORY • 1979 NINTH REVISION OF ICD/ICD-9 • RECOMMENDED “PROVISIONAL PROCEDURES CLASSIFICATIONS” BE PUBLISHED TO NINTH REVISION--CPT CODES BEGIN 1980 RECOMMENDED IMPAIRMENTS AND HANDICAPS CLASSIFICATIONS AS SUPPLEMENT Provisional acceptance--INTERNATIONAL CLASSIFICATION OF IMPAIRMENTS, DISABILITIES, AND HANDICAPS (ICIDH) 1993 REVISION OF ICIDH BEGUN 2001 International Classification of Functioning, Disability, and Health (ICF) APPROVED BY THE WORLD HEALTH ASSEMBLY

5. WHO Family of Classifications • ICD classifies diseases • ICF classifies health. • “Together, the two provide us with exceptionally broad and yet accurate tools to understand the health of a population and how the individual and his or her environment interact to hinder or promote a life lived to its full potential”. (Brundtland, WHO Director General, 5/2002)

6. ICF AIM AND PRINCIPLES • AIM—PROVIDE A UNIFIED AND STANDARD LANGUAGE AND FRAMEWORK FOR THE DESCRIPTION OF HEALTH STATES • PRINCIPLES • UNIVERSAL NATURE OF DISABILITY EXPERIENCE • CROSSES THE LIFE SPAN— BIRTH TO DEATH • ETIOLOGY NEUTRAL— PHYSICAL, EMOTIONAL,etc. • NEUTRAL LANGUAGE— FUNCTION, ACTIVITY, PARTICIPATION, ENVIRONMENT

7. Body function&structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors ICF Conceptual Framework Health Condition (disorder/disease)

8. BODY FUNCTIONS Mental Sensory Voice, speech Cardiovascular, haematological,immunological & respiratory Digestive, metabolic, endocrine Genitourinary & reproductive Neuromusculoskeletal, & movement related functions Skin & related structures Body Functions & Structures/Impairments BODY STRUCTURES Nervous system Eye, ear & related structures Voice & speech structures Cardiovascular, immunological & respiratory structures Digestive, metabolism & endocrine Genitourinary structures Movement related structures Skin & related structures

9. Activities and Participation:Limitations/Restrictions 1 Learning & Applying Knowledge 2 General Tasks and Demands 3 Communication 4 Movement 5 Self Care ______________mind the gap__ 6 Domestic Life Areas 7 Interpersonal Interactions 8 Major Life Areas 9 Community, Social & Civic Life

10. Environmental Factors:Barriers/Facilitators 1. Products and technology 2. Natural environment and human-made changes to the environment 3. Support and relationships 4. Attitudes 5. Services, systems and policies

11. USES OF ICF-not a TOOL; a standard language for documentation • DOCUMENTATION OF CHILDREN’S RIGHTS • CLINICAL — assess needs, evaluate progress and interventions • RESEARCH—measure outcomes, impact of environmental factors on activity limitations and societal participation • SOCIAL POLICY—social security planning, environmental design and implementation • EDUCATIONAL—assess and monitor function • STATISTICAL— collecting data for population surveys or administrative data

12. ICF-CY: reference standard for documenting children’s rights • UN Convention on the Rights of the Child-emphasis on Article 23 (1989) • UN Standard Rules for the Equalization of Opportunities (1994) • Salamanca Statement on the Right to Education • Education for All-World Education Forum @ Dakar (2000)

13. Need for version of ICF for children & youth • Nature and form of functioning in children different from that of adults—children are not small adults • Child is a “moving target” in classification of function—changes every 6-12 months throughout developing years, esp. activities • Primary environments and participation areas differ for children • ICF version for children and youth facilitates continuity of documentation e.g. transitions from child to adult services and communication among professionals and with parents

14. Presentation overview • Summarize development of ICF-CY as 1st derived version of the International Classification of Functioning, Disability & Health • Describe relevance of ICF-CY for current issues in childhood disability • Identify emerging priorities for ICF-CY

15. Need for ICF-CY • Developing child as “moving target”

16. Need for ICF-CY • Activities differ from those of adults

17. Need for ICF-CY • Precursors of participation and life roles

18. Need for ICF-CY • Emerging habitual, frequent and occasional environments

19. Current issues in child assessment and intervention • Masking of functional characteristics within a diagnosis- same diagnosis , varied function • Masking of functional commonalities across different diagnoses- different diagnoses, common functional problems • Disconnect between diagnostic identification and the nature of intervention • Selecting appropriate variables to document outcome with development and intervention—usually Activities or Participation

20. Development of the ICF-CY • Structure ICF main volume maintained • Inclusion/exclusion criteria for codes were expanded • New content added to unused codes at 4, 5 and 6 character level to address needs outlined before • 2nd draft prepared for review on WHO website fall of 2005 • Publication expected 2006

21. Development of the ICF-CY

22. ICF-CY: Example of new code for Body Functions • b120 General cognitive functions • General mental functions required to represent, and constructively integrate knowledge of objects, events and experiences and apply that knowledge in tasks requiring mental rather than physical activity. • Exclusion: higher level cognitive functions (b164)

23. ICF-CY: representative new A/P codes • d1200-03 mouthing, touching, smelling, tasting • d133 Acquiring language • d1330 acquiring single words or meaningful symbols • d1331 combining words into phrases • d1332 acquiring syntax • d2300 Following routines • d2304 Adapting to changes in daily routine • d2305 Adapting to changes in time demands • d2306 Managing one’s time • d5205 Caring for the nose • d53000-10/ Indicating need for urination, defecation • d880 Engagement in play—solitary, onlooker, parallel, shared

24. Framework for use of ICF-CY in documentation Health Conditions- Syndrome, diagnosis, category Activities (Intervention/outcomes) Participation (Outcomes) Body Structures & Functions: (Assessment) Environmental Personal Factors: (Assessment Factors & Intervention)

25. FOCUS DIMENSION What is child’s health status? Health conditions-ICD How does child’s Structure/Function-ICF body/mind function? How does the child Activities-ICF perform daily life activities? How is child involved in Participation-ICF roles/situations? What are the things, Environment-ICF conditions, & circumstances surrounding the child? Joint use of family of ICD and ICF to document function and health

26. ICF-CY Uses in Documentation • I. Document child’s intra-individual profile of health & functioning • II. Clarify inter-individual variability across diagnoses with use of ICD/ICF • III. Generate intervention or treatment plan • IV. Track developmental status • V. Frame measurement and select indicators of outcome

27. I. Documenting intra-individual differences: autism spectrum disorders • “…the manifestations of autism are diverse, creating difficulty in using traditional categorical classification schemes”. (Beglinger & Smith, 2001) • Differentiation of autism and autistic-like disorders in individuals with normal intelligence (c.f. Volkmar, Klin, & Pauls, 1998) • Regression issues in autism • Autism and early onset schizophrenia (Konstanteras & Hewitt, 2001) • Overlap with language disorders (c.f. Bishop & Norbury, 2002)

28. Documenting criteria for diagnosis of autism—Diagnostic and Statistical Manual IV • Preschooler with Autistic disorder • impairment in social function • d710.3 basic interpersonal interactions • d710.2 basic interpersonal interactions • D750.2 informal social relationships • D760.3family relationships • impairment in communication • d310.2 communicating with – receiving spoken messages • d315.4 communicating with – receiving nonverbal messages • d330.4 speaking • d335.3 producing nonverbal messages • restricted, repetitive stereotypic behavior pattern • b7653 Stereotypies and mannerisms

29. Child A b1142 orientation to person b122 global psychosocial functions d310 communicating d510 self care d710 interpersonal interactions F84.4 Stereotyped movements F84.1 Atypical autism Child B b1142 orientation to person b144 memory functions d1600 attending to touch, face and voice d130 copying d310 communicating d330 speaking F84.2 Rett syndrome F76 Moderate Mental Retardation II. Use of ICF-CY and ICD to clarify inter-individual differences across diagnoses

30. Problems/ limitations *social interaction *communication *rigid repetitive, stereotyped behavior patterns *developmental level *attention Intervention focus d710-729 personal interactions d310-329 communication d235 managing one’s own behavior d 880 engaging in play d220 undertaking multiple tasks III. Use of ICF-CY to identify focus of interventions or treatments

31. IV. Developmental tracking: same ICD with age-changes in ICF-CY codes

32. ICF-CY- framing functional outcomes of child interventions: measuring progress • Gradient of change: reduction of severity level within code (regulating behaviors within interaction) • d7202.4 --> d7202.2 • Hierarchy of change: moving from lower level code to higher level code (undertaking simple task) • d2100.2  (undertaking complex task) d2101.2

33. V. Use of ICF-CY to frame functional outcomes of intervention Body Functions & Structures Activities & Participation Environmental Factors Access to needed interventions Progressive transitions in clinical and educational settings Positive effects of medication on mental functions -attention Improvement in school functioning; in personal functioning; in social relationships

34. Public Health Uses/USA • Survey of Children with Special Health Care Needs • Early Intervention Data Handbook—US Dept of Educ. • Includes A/P codes for eligibility/personal functioning, examples • Focusing attention • Solving simple problems • communicating/ • Sitting/standing • Crawling/walking • toileting • Georgia Early Intervention Project • Pilot testing in EI (0-3 years) programs • Using inventory from ICF-CY workgroup as baseline, intermediate , and exit evaluations

35. SLAITS/CSHCN Survey--2005 • Body Functions— • seeing, hearing, • breathing, swallowing/digesting food, circulation, • pain, • feeling anxious or depressed • Activities/participation— • Eating, dressing, bathing, moving around, using hands, • Learning, understanding, or paying attention? • Speaking, communicating, being understood • Behavior problems, such as acting out, fighting, bullying, • Making and keeping friends

36. ICF as common language for special education practice: example *Manual for use of ICF for children and youth with disabilities *Edited and written by National Institute of Special Education Japan, Approved by WHO

37. Educational Outcomes of ADHD ADHD Activities: Limitations Learning to read, write, calculate; carrying out tasks; managing own behavior, stress, frustration Participation: Restriction Problems moving across education levels, succeeding in program; school life Body functions: ImpairmentsAttention, memory, emotion regulation, higher cognitive functions Environmental Factors General and special education Personal Factors From Loe and Feldman, 2005

38. Revisiting a priority: classification of children (1975) -> classification of functioning & disability in children (2005) • “..classification is serious business. Classification can profoundly affect what happens to a child. It can open doors to services and experiences the child needs to grow in competence, to become a person sure of his worth, and appreciate the worth of others, to live with zest and to know joy”. • (Classification of Children, Hobbs, 1975; The futures of children, Hobbs, 1975)

39. Don Lollar, Ed.D. • CDC/NCBDDD, Atlanta, GA, USA • dlollar@cdc.gov • Rune J. Simeonsson, Ph.D.,MSPH • University of North Carolina, Chapel Hill, USA • rjsimeon@email.unc.edu