ICFCHILDREN YOUTH Donald J Lollar Ed D Centers

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

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 2

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 3

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 4

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) 5

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 6

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

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

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

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

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 11

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 12

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 13

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 14

Development of the ICFCY Expansions. I, E New codes 4 New codes 5 New codes 6 New codes. Total BF 14 4 13 2 33 BS 0 1 2 4 7 A&P 66 21 77 4 168 EF 19 2 8 0 29 Total 99 28 100 10 15 237

ICF-CY: representative new A/P codes • d 1200 -03 mouthing, touching, smelling, tasting • d 133 Acquiring language – d 1330 acquiring single words or meaningful symbols – d 1331 combining words into phrases – d 1332 acquiring syntax • • d 2300 Following routines d 2304 Adapting to changes in daily routine d 2305 Adapting to changes in time demands d 2306 Managing one’s time • d 5205 Caring for the nose • d 53000 -10/ Indicating need for urination, defecation • d 880 Engagement in play—solitary, onlooker, parallel, shared 16

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

Joint use of family of ICD and ICF to document function and health 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 things, Environment-ICF conditions, & circumstances surrounding the child? 18

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 19

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) 20

Documenting criteria for diagnosis of autism—Diagnostic and Statistical Manual IV • Preschooler with Autistic disorder • impairment in social function – – d 710. 3 basic interpersonal interactions d 710. 2 basic interpersonal interactions D 750. 2 informal social relationships D 760. 3 family relationships • impairment in communication – – d 310. 2 communicating with – receiving spoken messages d 315. 4 communicating with – receiving nonverbal messages d 330. 4 speaking d 335. 3 producing nonverbal messages • restricted, repetitive stereotypic behavior pattern – b 7653 Stereotypies and mannerisms 21

II. Use of ICF-CY and ICD to clarify interindividual differences across diagnoses • Child A • b 1142 orientation to person • b 122 global psychosocial functions • d 310 communicating • d 510 self care • d 710 interpersonal interactions • F 84. 4 Stereotyped movements • F 84. 1 Atypical autism • • • Child B b 1142 orientation to person b 144 memory functions d 1600 attending to touch, face and voice d 130 copying d 310 communicating d 330 speaking F 84. 2 Rett syndrome F 76 Moderate Mental Retardation 22

III. Use of ICF-CY to design interventions or treatments • *communication • Intervention focus • d 710 -729 personal interactions • d 310 -329 communication • *rigid repetitive, stereotyped behavior patterns • d 235 managing one’s own behavior • Limitations/delays • *social interaction *developmental level • *attention • d 880 engaging in play • d 220 undertaking multiple tasks 23

IV. Developmental tracking: same ICD with age-changes in ICF-CY codes 18 months 3 years 6 years ICD-F 84 Body function B 132 acquiring information B 132 acquiring language b 167 language Body structure s 230 eyes Activity/ participation d 120 sensing d 130 copying d 155 skill acquisition Environmental factors e 450 prof. attitudes e 585 educ services e 586 special educ training Health condition 24

V. Use of ICF-CY to frame functional outcomes of intervention Body Functions & Structures Effects of medication on mental functions attention Activities & Participation Improvement in school functioning; in personal functioning; in social relationships Environmental Factors Access to Intervention (ABA model; Psycho. Educational Model) Transitions in clinical and educational 25 settings

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 26

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 27

Educational Outcomes of 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 Environmental Factors General and special education Participation: Restriction Problems moving across education levels, succeeding in program; school life Personal Factors From Loe and Feldman, 2005

• 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 29