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

8. 8 Body Functions & Structures / Impairments BODY FUNCTIONS Mental Sensory Voice, speech Cardiovascular, haematological,immunological & respiratory Digestive, metabolic, endocrine Genitourinary & reproductive Neuromusculoskeletal, & movement related functions Skin & related structures 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. 9 Activities and Participation: Limitations/Restrictions 1Learning & Applying Knowledge 2General Tasks and Demands 3Communication 4Movement 5Self Care ______________mind the gap__ 6Domestic Life Areas 7Interpersonal Interactions 8Major Life Areas 9Community, Social & Civic Life

10. 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. 11 USES OF ICF— a CLASSIFICATION; not a TOOL 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. 12 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

13. 13 Current issues in child assessment and intervention Masking 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

14. 14 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 2 nd draft prepared for review on WHO website fall of 2005 Publication expected 2006

15. 15 Development of the ICF- CY Expan- sions- I, E New codes- 4 New codes- 5 New codes- 6 New codes- Total B F 14413233 B S 01247 A & P 6621774168 E F 1928029 Total992810010237

16. 16 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

17. 17 Framework for use of ICF-CY in documentation Health Conditions- Syndrome, diagnosis, category Body Structures & Functions : ( Assessment ) Activities ( Intervention/ outcomes) Participation ( Outcomes ) Environmental Personal Factors: (AssessmentFactors & Intervention)

18. 18 Joint use of family of ICD and ICF to document function and health FOCUSDIMENSION What is child’s health status? Health conditions-ICD How does child’s Structure/Function- ICF body/mind function? How does the childActivities-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?

19. 19 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

20. 20 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)

21. 21 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

22. 22 II. Use of ICF-CY and ICD to clarify inter- individual differences across diagnoses 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

23. 23 III. Use of ICF-CY to design interventions or treatments Limitations/delays *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

24. 24 IV. Developmental tracking: same ICD with age-changes in ICF-CY codes 18 months3 years6 years Health condition ICD-F 84 Body functionB132 acquiring information B132 acquiring language b167 language Body structure s230 eyes Activity/ participation d120 sensingd130 copyingd155 skill acquisition Environ- mental factors e450 prof. attitudes e585 educ services e586 special educ training

25. 25 V. Use of ICF-CY to frame functional outcomes of intervention Body Functions &StructuresActivities&ParticipationEnvironmentalFactors Access to Intervention (ABA model; Psycho-EducationalModel) Transitions in clinical and educationalsettings Effects of medication on mental functions - attention Improvement in school functioning; in personal functioning; in social relationships

26. 26 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

27. 27 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

28. Educational Outcomes of ADHD ADHD Body functions: Impairments Attention, memory, emotion regulation, higher cognitive functions 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 Environmental Factors General and special education Personal Factors From Loe and Feldman, 2005

29. 29 Don Lollar, Ed.D. –CDC/NCBDDD, Atlanta, GA, USA dlollar@cdc.gov Rune Simeonsson, Ph.D. –University of North Carolina, Chapel Hill, USA rjsimeon@email.unc.edu