Classifying childhood disability with
the ICF-CY: from function to
context
Rune J. Simeonsson, Ph.D.,MSPH
University of North Carolina, Chapel Hill
Don J. Lollar, Ed.D.
U.S. Centers for Disease Control and
Prevention
Priority of documenting childhood
disability: 1915
• “ during the third or fourth month, the
most important acquisition being the
power of balancing the head on the
shoulders; the absence of this power at
this stage was one of the earliest signs
of mental deficiency” (Forsyth, 1915,
British Medical Journal, p. 535)
Overview
• Present overview of ICF version for children and
youth (ICF-CY)
• Identify different uses of the ICF-CY
• Review guidelines for coding
• Illustrate coding applications for different uses




Clinical
Educational
Data management
Statistical/ Research
• Identify continuing issues in the implementation of
the ICF-CY
ICF-encompassing
adult functioning
Body Functions
&
Structures
Activities
&
Participation
Environmental
Factors
Functions
Capacity
Barriers
Structures
Performance
Facilitators
Need for ICF-CY
Functioning, Activities, Participation &
Environments different

from those of adults
Why is there a need for an ICF
for children & youth?
• Nature and form of functioning in children different
from that of adults
• Main volume of ICF lacking precursors of adult
characteristics
• Child as a “moving target” in classification of function
• Indicators of functional risk factors crucial for
prevention and early intervention
• ICF version for children and youth provides
continuity of documentation in transitions from child
to adult services
Chronology
• 1996-2001- Children’s task force on development of
ICF
• 2001- Development of ICF-CY commissioned (WHOFIC, Washington, DC)
• 2002-2005- Convening of WHO work group in various
venues (Africa, Europe, North America, Asia)
• 2003- First draft of ICF-CY delivered to WHO
• 2004-2005- Collection of field trial data
• 2005- Revision of ICF-CY
Chronology
• 2005- Meeting with WHO to finalize ICF-CY
• 2005- Preparation and submission of evidence
document to WHO
• 2005-Submission of 2nd draft to WHO
• 2005- Review of 2nd draft by experts &
original writers
• 2006-Final revisions/ ICFCY photo contest
• 2006- Anticipated publication
Guidelines for development of the ICF-CY
• Development of ICF-CY guided by relevant
research and theory
• Structure ICF main volume maintained
• Inclusion/exclusion criteria expanded
• New content added to unused codes at 4, 5
and 6 character level
• Formats to highlight applications relevant
to children
Central concepts from theory and research
guiding ICF-CY development
• Development and Disablement as parallel
processes-
• Changes in functions, activities and participation
of child reflecting:
 Role of environment (transactional model)
 Child in context (Ecological systems theory)
 Development (Similar sequence/similar
structure)
 Behavioral Regulation & organization
 Mediating role of Temperament/behavioral
style
 Timing and maturation (Developmental delay)
Development of the ICF-CY
Expansions-
New
codes- 4
New
codes- 5
New
codes- 6
New
codesTotal
I, E
BF
14
4
13
2
33
BS
0
1
2
4
7
A&P
EF
66
21
77
4
168
19
2
8
0
29
Total
99
28
100
10
237
ICF-CY: New BF codes
• Manual dominance
b1473
• Lateral dominance
b1474
• Reception of gestural language b16703
• Expression of gestural language b16713
• Growth maintenance function
b560
• Onset of menstruation
b6503
• Acquiring learning


Acquiring information
Acquiring language
b132
b133
ICF-CY: representative
new content (e.g. A/P codes)
•
•
•
•
•
•
•
•
Learning through actions and playing
d131
Acquiring language
d133
Acquiring concepts
d134
Following routines
d2300
Adapting to changes in daily routine
d2304
Adapting to changes in time demands
d2305
Managing one’s time
d2306
Managing one’s own behavior
d235
•
•
•
•
Caring for the nose
d5205
Indicating need for urination
d53000
Indicating need for defecation
d53010
Indicating need for eating
d5500
•
ICF-CY: environmental factors codes
• Drink
e1102
• Products and technology for play
e1271
• Products and technology for
personal indoor and outdoor mobility
transportation
e120
• Products and technology for
communication
• Special education & training
e125
e586
General coding rules: annex 2 ICF
A. Select an array of codes to form an
individual’s profile
B. Code relevant information- always in the
context of a known or presumed health
condition
C. Code explicit information- the basis for
coding must be explicit information
D.Code specific information- code at the
most specific level possible (1, 3, 4 or 5
character levels)
Criteria for qualifiers
Form of
Qualifier
ICF Manual (problem=
ICF-CY (std dev value< mean
Rating/
0-none
( 0-4%)
0-none
(5-24%)
1-mild
scale of difficulty in %)
Descript./ 1-mild
and/or % of population with
problem)
<-1.0 sd
(68%)
-1. -1.5sd
(22%)
Stand.dev
2-moderate (25-49%) 2-moderate1.5-2.5 sd (6%)
% of
difficulty
3-severe
% of
population
(50-95%)
3-severe 2.5-3.0 sd (3.0%)
4-complete (96-100%) 4-complete 3+sd
(1.0%)
Ethical guidelines in use of ICF: annex 6
• Respect and confidentiality




Respect inherent value and autonomy of individual
Never use to label individuals
Use with full knowledge, cooperation and consent of person or advocate
ICF codes treated confidentially
• Clinical use of the ICF



Explain purpose to individual or advocate
Opportunity for individual or advocate to participate
ICF used holistically (limitation in physical/social context)
• Social uses of ICF information




Used in collaboration with individuals or advocates
ICF information use toward social policy- change
ICF not used to deny rights
Recognize individual differences
Classification applications of ICF-CY
• A common, universal language shared across disciplines
and service settings
• A taxonomy for documentation of child functioning in:



assessment
intervention
outcome measurement
• A framework for specifying the Child, the Environment
and the Interaction in child- environment interaction
ICF-CY: documenting Child-Environment
Interaction
Child
Physical
and Mental function
& structure
Environment
Availability &
accessibility of
physical,
social, & psychological
elements
ICF-CY: documenting Child-Environment
Interaction
<--Interaction
Child
Body Function and
Body Structure
(intact- impaired)
Participation
(Full to restricted)
Activity
(Complete to limited )
Environmental
Factors
(Barriers Facilitators)
Classification applications of ICF-CY
• Standard for documentation of child rights-UN
Convention on the Rights of the Child
• Framework for integrating interdisciplinary work
• Profiling functions for planning individualized
interventions
• Documenting clinical features of childhood
health conditions & diagnoses
• Resource in data management
• Intervention and outcome markers in education
• Variables for statistical and research work
ICF: Framework for interdisciplinary work
Health Condition
(disorder/disease)
Body Structures
& Functions
Participation
(participation
restriction)
Activities
(activity limitation)
Environmental
Factors
Personal
Factors
ICF-CY: General steps in coding
• 1. Define the information available for coding and
identify whether it relates to the domain of Body
Functions, Body Structures, Activities/Participation
or Environmental Factors.
• 2. Locate the chapter (4-character code) within the
appropriate domain most closely corresponding to the
information to be coded.
• 3. Read the description of the 4-character code and
attend to any notes related to the description.
• 4. Review any inclusion or exclusion notes that apply
to the code and proceed accordingly.
ICF-CY: General steps in coding
• 5. Determine if the information to be coded is consistent
with the 4-character level or if a more detailed
description at the 5- or 6-character code should be
examined.
• 6. Proceed to the level of code that most closely
corresponds to the information to be coded. Review the
description and any inclusion or exclusion notes that apply
to the code.
• 7. Select the code and review available information for
assigning a value for the universal qualifier that defines
the extent of the impairment, functional limitation,
participation restriction (0=no impairment/difficulty to
4= complete impairment/difficulty or environmental
barrier (0=no barrier to 4=complete barrier) or facilitator
(0=no facilitator to+ 4=complete facilitator)
ICF-CY: General steps in coding
• 8. Assign the code with the qualifier at the 2nd -, 3rd
- or 4th-item level. For example, d115.2 (moderate
difficulty in listening).
• 9. Repeat steps 1-8 for each manifestation of
function or disability of interest for coding and where
information is available
• 10. Parents and consumers may participate in the
process by completing age-appropriate inventories
that allow specific areas of functional concern to be
highlighted, but before full evaluations and codes are
provided by professionals or a team of professionals.
Case: 10 year old boy
• T is a ten-year-old boy who was referred to a clinic for
an evaluation after experiencing pervasive academic
difficulties in the previous two years of school. On the
basis of observation, it is clear that he has significant
problems in concentration on academic tasks and is
highly distractible. His parents report that T is “on the
go” all the time and doesn’t seem to listen. According
to his parents and teachers he has difficulty keeping
still for any length of time in tasks at home and at
school. At the present time, this means that he has
trouble completing assigned work in the classroom.
Case: 10 year old boy
He has particular difficulties remembering material he
has studied. He is currently failing all of his academic
classes and his performance in reading and writing is at
the second grade level. He also shows difficulties
adjusting to social situations involving other children.
At school as well as at home, T’s teacher and parents
are concerned about his high level of activity and the
fact that he doesn’t seem to be able to think before
he acts. This is evident in his social behavior when he
fails to wait for his turn in games and sports and at
home when he rides his bicycle into a busy street
without looking.
Case: 10 year old boy
• A number of different interventions have been
tried to help T perform in the classroom, but
these have not resulted in improved
performance. While the family has been
reluctant to consider medication, T was recently
seen by his pediatrician and Ritalin has been
prescribed for his high level of activity. In
conjunction with the medication trial, the school
is designing an education support plan.
Case: 14 year old
• J is a 14 year-old girl living with her parents in a small
town. She has severe asthma which was detected at a
very young age. In addition to heightened response to
specific allergens, J’s asthmatic attacks are also
triggered by exercise, cold air and when she feels
anxious. These attacks last 1-2 hours and occur several
times a week. She is currently prescribed a
bronchodilator and is to use a nebulizer
prophylactically. In the last year, however, J is often
inconsistent in following the medication regimen with
the result that acute episodes are occurring more
frequently.
Case: 14 year old
• From the time she was enrolled in a preschool
program to the present, J’s school attendance
has been marked by frequent absences. The
result has been that her achievement has been
consistently poor, and while she has not failed
any grades she is falling farther and farther
behind her peers. At the present time, she is in
the eighth grade in the local middle school.
Because of frequent absences, J has not
developed a consistent group of friends at
school.
Case: 14 year old
• Further, because exercise triggers acute
episodes, she has not participated in the physical
education program at school and is not engaged in
any other regular physical activity. A result is
that she has experienced a significant weight
gain in the last year. J reports feeling different
from others increasingly isolated from her peers.
Her parents are becoming very concerned about
her physical and emotional health and are seeking
consultation from their medical doctor.
ICF-Cy application: profile dimensions of
childhood disability
• 10-year old Child
• 14 year old Child
Clinical applications: clarification of
assessment and diagnosis
• Differentiate characteristics within a
diagnosis-
• Differentiate characteristics of children with
the same or different diagnosis-
• Address disconnect between diagnostic
information and the nature of intervention
• Selection of relevant variables for
documentation of child outcomes
Clinical application: possible
features characterizing child
• Child with:
• impairment in social function



d710.3 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
Clinical application; clarifying
DSM-IV-TR diagnosis
• 299.0 Criteria for Autistic disorder
• A. Total of 6 items from three domains



impairment in social function (2+ items)
impairment in communication (1+)
restricted, repetitive stereotypic behavior pattern (1+)
• B. Delayed/abnormal functioning <3 yrs in one of three areas:
social interaction, language, symbolic play
• C. Rule out Rett syndrome or Childhood Disintegrative Disorder.
Clinical application: possible features
characterizing child
• Child with problems of attention





B1400.3 sustaining attention
B1402.4 dividing attention
D110.3 watching
D115.3 listening
D160.4 focusing attention
• problems of undertaking and completing task





B1641.3 organization and planning
B1646.3 problem solving
D2100.3 undertaking a single task
d2102.4 undertaking a single task independently
d2201.3 completing multiple tasks
Clinical application: possible features
characterizing child
• Child with problems of regulating activity &
behavior
 B1304.3 impulse control
 B127.4 regulation of behavior
 B1470.3 psychomotor control
 D2301.3 managing daily routine
 D2303.4 managing one’s own activity level
 D4153.3 maintaining a sitting position
 D7202.2 regulating behaviors within
interactions
 D7204.3 maintaining social space
 D820.4 school education
Clinical application: clarifying DSM-IVTR diagnosis
Criteria for ADHD- Inattention :
Six or more of the following- manifested often
• Inattention to details
• Difficulty sustaining
attention
• Seems not to listen
• Fails to finish tasks
• Difficulty organizing
• Avoids tasks requiring
sustained attention
• Loses things
• Easily distracted
• Forgetful
Clinical application: clarifying
DSM-IV TR diagnosis
Criteria for ADHD Impulsivity/Hyperactivity :
Six or more of the following- manifested often
• Impulsivity
• Hyperactivity
• Difficulty awaiting turn
• Inappropriate running/ climbing
• Blurts out answer before • Fidgets
• Unable to stay seated
question is finished
(restlessness)
• Interrupts or intrudes upon
• Difficulty engaging in leisure
others
activities quietly
• On the go
• Talks excessively
Educational application: manual for special
education
*Manual for use of ICF for
children and youth with
disabilities
*Edited and written
by National Institute of
Special Education Japan,
Approved by WHO
Educational application: framing
intervention outcomes
Activities
•Improvement in
school functioning;
•d166 reading
•d170 writing
•d172 calculating
•d160 focusing attention
•d175 solving problems
•d310 communicating
•d330 speaking
Participation
•Improvement
in personal functioning;
& social relationships
-D880 play
-D350 conversation
-D710 interpersonal
relationships
-D7504 relating with peers
-D7604 family relationships
Educational applications: documenting
progress of functional outcomes
• Gradient of change: reduction of severity level
within code (e.g. regulating behaviors within
interaction)
• d7202.4 --> d7202.2
• ( complete-> moderate level)
• Hierarchy of change: moving from lower level
code to higher level code
• (undertaking simple task) d2100.2
• 
• (undertaking complex task) d2101.2
Data management application
• Use of the ICF and sample d-Codes to
describe health-related data elements are
recommended in the U.S. Department of
Education’s Early Intervention Data
Handbook (Version 1.0).
• http://www.ideadata.org/
• EarlyInterventionDataHandbook.asp
EI DATA HANDBOOK
• PURPOSE: to provide guidance for record
information systems and collection of data on
early intervention services
• A reference book- to promote common
language- does not constitute federal
requirement
• USE: gathering information about infants and
toddlers with disabilities for service
decisions, program management, research,
policy analysis and program evaluation
SAMPLE ICF d-CODES IN
EI DATA HANDBOOK
d160
d1750
d329
d330
d349
d4103
d4104
d435
d440
d445
d450
d4550
d465
d530
Focusing attention
Solving simple problems
Communicating-Receiving Information
Speaking
Communication
Sitting
Standing
Moving objects with lower extremities
Fine hand use
Hand and arm use
Walking
Crawling
Moving around using equipment
Toileting
Assessment inventory in Early
intervention
• Early intervention program for children birth to
3 in Georgia
• Adaptation of 0-3 questionnaire developed for
field trials of ICF-CY
• Selected codes from Activities/Participation and
Environmental Factors
• Very favorable response by parents to format
and developmental content
• Resulted in raised awareness of environmental
factors not considered previously
Statistical & research
applications
• Established inter-rater reliability in assigning
ICF codes:


children with disabilities using existing
developmental measures (Ogonowski, et al., 2004);
and children with special health care needs
structured interview (Kronk, et al., 2005)
• ICF framework for setting goals for children
with speech impairments (McLeod & Bleile,
2004).
Statistical & research applications:
Canadian national survey data
• Measuring chronic health conditions and
disability in children in Canadian national
survey data (McDougall & Miller, 2003).
• Review of 4 disability and 5 health surveys
for extent of coverage of health conditions
(ICD-10) and disability (impairment, activity
and participation restrictions- ICF)
• Two independent reviewers
Statistical & research applications:
Canadian national survey data
Extent of
coverage of
domain
Disability Surveys Health Surveys
Health conditions 67%
39%
Impairments
50%
55%
Activities/
Participation
64%
84%
Environmental
Factors
60%
68%
Statistical & research applications:
Canadian national survey data
• Participation and Activity Limitation Survey
and National Longitudinal Survey for Children
and Youth provided best coverage of ICF
activity limitations
• PALS provided most comprehensive coverage
of need for/use of Assistive technology
• Areas of limited coverage in surveys:



Mental functions and some body functions;
Personal care and domestic life;
natural environment changes, attitudes and policies.
Research application: joint use of ICF
and ICD-10 to code reasons for
eligibility in early intervention
• What is the nature and prevalence of functional
characteristics of young children (< 3 years) in
early intervention ?
• Lack of information due to the fact that existing
eligibility data assigned children to 3 general
categories (developmental delay, established
medical conditions, risk status)
• Data drawn from National Early Intervention
Longitudinal Study (NEILS) a weighted sample of
children and families from the time they enter
early intervention through at least kindergarten.
NEILS Enrollment Sample
• Information collected on 5,668 children
• Descriptors accompanying the child’s eligibility status
were coded
• 445 different classification entries were organized
under 4 categories and 29 subcategories
• An average of 1.5 descriptors provided for each child
(range 1 -11)
Algorithm for NEILS coding system
Classification
A conceptual framework with 4 major categories
(I-IV) and 29 sub-categories (A-BB):
I. Impairment of body functions or structure (A-H)
II. Limitations of activity or performance (I-P)
III. Diagnosed health conditions (Q-X)
IV. Environmental factors (Y-BB)
Method:
Descriptors on enrollment forms were coded to the
closest ICD-10 or ICF codes
ICF: Framework for NEILS coding system
CATEGORY III:
Health Condition
(disorder/diseaseICD dx)
CATEGORY I:
Body Structures
& Functions
CATEGORY II:
Activities
(activity limitation)
CATEGORY IV:
Environmental
Factors
CATEGORY II:
Participation
(participation
restriction)
Personal
Factors
Distribution of descriptors (%) assigned to
ICD-10 and ICF codes
CATEGORY
Coded to ICD Coded to ICF
Total= 385
Total=58
I. Body
function
-structure
23.0%
5.9%
II. Activity
0.4%
2.0%
III. Health
56.6%
3.2%
IV.
6.3%
2.0%
limitations
conditions
Environment
Distribution of ICD codes (N=385) in
NEILS coding system
• Chapter
%
• Infection
1.62
• Neoplasms
1.08
• Metabolic
10.54
•
%
• Genitourinary
0.08
• Congenital
45.68
• Injuries
1.62
15.13
• Social risk
2.16
• Circulatory
6.49
• V-codes
5.95
• Digestive
5.14
• Nervous system
Distribution of ICF (N=58) codes in NEILS
coding system
• Domain
%
• Body/mental function
37.3
• Body structures
27.1
• Activities/Participation
22.0
• Environmental factors
13.6
Distribution of descriptors (%) assigned to
codes by category* (>100% given multiple
descriptors/child)
CATEGORY
Percent of sample
I. Body
function
-structure
71.8%
II. Activity
9.5%
III. Health
37.0%
IV.
4.8%
limitations
conditions
Environment
ICF-CY: further work
• Mapping of existing instruments to ICF-CY
domains and codes
• Development of ICF-CY based screening
instruments
• Development of assessment measures compatible
with ICF-CY
• Introduction of ICF-CY codes into surveys
• Introduction of ICF-CY codes into information
systems
• Education and training of field
Revisiting a priority
• “..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)