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ICF-CHILDREN & YOUTH

Donald J. Lollar, Ed.D.

Centers for Disease Control & PreventionNational Center on Birth Defects &

Developmental Disabilities

Atlanta, Georgia USA

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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

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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

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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

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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)

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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

Health Condition Health Condition ((disorder/diseasedisorder/disease))

ICF Conceptual FrameworkICF Conceptual Framework

Environmental Environmental FactorsFactors

Personal Personal FactorsFactors

Body Body function&structurefunction&structure

(Impairment(Impairment))

ActivitiesActivities(Limitation)(Limitation)

ParticipationParticipation(Restriction)(Restriction)

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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 STRUCTURESNervous systemEye, ear & related structures

Voice & speech structuresCardiovascular, immunological & respiratory structures

Digestive, metabolism & endocrineGenitourinary structures

Movement related structures

Skin & related structures

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Activities and Participation:Limitations/Restrictions

1 Learning & Applying Knowledge2 General Tasks and Demands3 Communication4 Movement5 Self Care ______________mind the gap__

6 Domestic Life Areas7 Interpersonal Interactions8 Major Life Areas9 Community, Social & Civic Life

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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

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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

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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

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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

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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

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Development of the ICF-CY

Expan-sions-

I, E

New codes- 4

New codes- 5

New codes- 6

New codes- Total

B F 14 4 13 2 33

B S 0 1 2 4 7

A & P 66 21 77 4 168

E F 19 2 8 0 29

Total 99 28 100 10 237

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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

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Framework for use of ICF-CY in documentation

Health Conditions-

Syndrome, diagnosis, category

Body Structures& Functions:

(Assessment)

Activities(Intervention/

outcomes)

Participation(Outcomes)

Environmental PersonalFactors: (Assessment Factors& Intervention)

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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 the things, Environment-ICF

conditions, & circumstances surrounding the child?

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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

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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)

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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

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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

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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

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

18 months 3 years 6 years

Health condition

ICD-F 84 ICD-F 84 ICD-F 84

Body function B132 acquiring information

B132 acquiring language

b167 language

Body structure

s230 eyes s230 eyes s230 eyes

Activity/ participation

d120 sensing d130 copying d155 skill acquisition

Environ-mental factors

e450 prof. attitudes

e585 educ services

e586 special educ training

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V. Use of ICF-CY to frame functional outcomes of intervention

Body FunctionsBody Functions&&

StructuresStructures

Activities Activities & &

ParticipationParticipation

Environmental Environmental

FactorsFactors

Access to Access to Intervention Intervention (ABA model;(ABA model;Psycho-Psycho-EducationalEducationalModel) Model) Transitions in Transitions in clinical and clinical and educational educational settingssettings

Effects of Effects of medication medication on mental on mental functions -functions -attentionattention

Improvement in Improvement in school school functioning;functioning;in personal in personal functioning;functioning;in social in social relationshipsrelationships

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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

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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

Educational Outcomes of ADHDADHD

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

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• 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