ICF for children and youth ICFCY: moving beyond classification of the child

1
ICF for children and youth (ICF-CY) moving
beyond classification of the child

• Interagency Subcommittee on Disability
  Statistics
• Arlington VA, 10 July, 2007
• Rune J. Simeonsson PhD MSPH
• University of North Carolina at Chapel
  Hill
• Jönköping University

2
ICF for children and youth (ICF-CY) moving
beyond classification of the child

• Why federal disability agencies should use the
  ICF-CY
• Interagency Subcommittee on Disability
  Statistics
• Arlington VA, 10 July, 2007
• Rune J. Simeonsson PhD MSPH
• University of North Carolina at Chapel
  Hill
• Jönköping University

3
Who is this child? On what basis is child
classified for services and supports?
Depends classification varies as a function of
Context, agency, service system
4
In mental health, classification will take the
form of one or more DSM-IV TR diagnoses
E.g. 318.1 Moderate mental retardation 315.4
Developmental Coordination Disorder 315.31
Developmental Expressive Receptive Language
Disorder
5
In medical contexts, classification will take the
form of one or more ICD-10 diagnoses
F72.1 Severe mental retardation with significant
impairment of behavior F98.4 Stereotyped movement
disorder Q 90.0 Trisomy 21
6
In special education, classification will be in
the form of assignment to 1 of 13 IDEA categories
Specific learning disorders Hearing
impairments Deafness Visual impairment
blindness Mental retardation Speech language
impairments Serious emotional disturbance Autism O
ther health impaired Traumatic brain
injury Orthopedic impairments Multiple
disabilities Developmental delay
7
In Social Security Administration, classification
based on meeting criteria for one of 15 listed
impairments
E.g. 112.0 Mental disorders 112.05 Mental
retardation 112.10 Autistic disorder and
other pervasive developmental
disorders 110.00 Impairments that affect
multiple body systems 110.06 Non-mosaic Down
Syndrome (Blue Book, 2005)
8
In clinical contexts- emergence of further
classification approaches

• Psychodynamic Diagnostic Manual
• Multi-dimensional classification of mental
  functioning in adults and children
• I. Personality patterns and disorders
• II.Mental functioning
• III. Manifest symptoms and concerns
• Kids in the Syndrome Mix (Kutcher,et al, 2007)
• Phenomenon of co-morbidity of ADHD, learning
  disability, ASD, OCD, Tourette, depression, ODD,
  sensory integration disorder, central auditory
  processing disorder

9
New syndromes to classify?

• Indigo children
• Strong willpower, born in or lt1978, creative,
  stubborn, independent, is 13 seems like 43, often
  diagnosed as ADD/ ADHD, insomnia difficult
  sleeping
• ltwww.indigochild.comgt

• Chrystal children
• Born inlt1995, large intensive eyes, talked late,
  ability/ gift to heal, interested in chrystals
  and rocks, speaks of angels and previous life,
  prefers vegetarian food, often diagnosed with
  autism,/aspergers syndrome

10
Problems of current classifications

• In all classification systems (ICD, DSM-IV TR,
  DSM-PC, Zero to Three) symptoms are collapsed
  into single entity masking functional status
  information and making the child the unit of
  classification
• Diversity of classification systems across
  agencies and service sectors confounds
  communication and management of information
  management restricts statistical summarization
• NO Common Language!

11
Child classification issues

• Variability of Functional Status Information
  (FSI)
• Children with same diagnoses may differ in
  functional characteristics- (e.g. mental
  retardation)
• Children with different diagnoses may share
  functional characteristics- (e.g. Fra-X, Rett
  Syndrome, Angelman Syndrome)
• Diagnoses and categories have limited utility
  for treatment
• planning and intervention-
• Problem of increased reference to co-morbidity
• assumes distinct and unique nature of manifested
  characteristics
• but may reflect successive or concurrent
  manifestation of single, global underlying
  process (Knapp Jensen, 2006)
• Need to break apart the phenotype and
  recognize importance of environtype and
  trajectory type in recommendations for DSM V
  (Jensen, Knapp Mrazek, 2006)

12
Classification issues are not new in 1887 two
level approach proposed

• I. Ethnic Classification
• ..being able to refer the child to an ethnic
  type other than Caucasian, settles beyond
  question that the cause of the maladywas
  antecedent to birth Malay variety, types of the
  South Sea Islands, North American Indian type,
  examples of the Negroid family, Mongolian type,
  Aztec type
• J.L. Down, (1887) Lettsomian Lectures, Some of
  the mental affections of childhood and youth
  British Medical Journal

13
1887 two level classification approach

• II. Etiological Classification
• A. Congenital- ..heredity, ..overwhelming proof
  of the transmissible nature of neurotic disease
• B. Accidental- children born or ready to be born
  with all the potentiality of intelligence, but
  whose brains became damaged by traumatic lesions,
  by medications or by inflammatory disease.
• C. Developmental- cases which break down by
  over-excitement in babyhood, and by
  over-pressure in schools at second dentition
  and puberty

14
Classification issues are not new Revisiting 1975

• The inappropriate labeling of children as
  delinquent, retarded, hyperkinetic, mentally ill,
  emotionally disturbed, and other classifications
  has serious consequences for the child..
  (Elliot Richardson, US Secretary of HEW).
• In response the Project on Classification of
  Exceptional Children was carried out in the early
  70s by a task force under the direction of
  Nicholas Hobbs with 2 products
• Issues in the Classification of Children
• The futures of children

15
Continuity of child classification issues from
1975 to present

• Classifications are idiosyncratic to disciplines/
  agencies/ systems
• Variability incompatible with data aggregation
  and comparison
• The categorical nature of funding and services
  represents a significant access barrier to health
  care and related supports and services for
  children- need for decategorization (Hughes et
  al., Bulletin of NY Academy of Medicine, 2000)
• Need for national indicators of child functioning
  and disability ltChildstats.gov/ac.2002gt

16
Continuity of 1975 recommendations for
classification of child function

• ..embrace the full range of conditions in
  children..emphasize services required, not types
  of children..
• ..take into account (for individual children in
  particular settings) assets and liabilities,
  strengths and weaknesses, linked to specific
  services..
• ..include the matrix of other persons significant
  in the life of the child, as well as the
  settings..
• ..simple as possible and potential users involved
• ..facilitate epidemiological studies (Hobbs, 1975)

17
ICF-CY From classification of child ?
classification of functional status

• Derived from ICF main volume
• Documents nature and form of child functioning as
  developmental precursors of those in adults
• Recognizes child as a moving target in
  classification of Functional Status Information
  (FSI) function
• Yields indicators of functional risk factors for
  prevention and early intervention
• Continuity of ICF-CY to ICF documentation in
  transitions across child to adult services
• Provides Common Language!

18
WHO Family of International ClassificationS

• ICD-10 International Classification of Diseases
• ICF- Main volume with glossary
• - Full version 9999 cat.
• - Short version 99 cat. (Published 2001)
• 3. ICF-Children Youth (Approved, October 2006)

19
WHO Work Group development of ICF-CY
1996-2001- Childrens task force in ICF
development 2002-2005- WHO ICF-CY work group
meetings (Africa, Europe, North America,
Asia) 2006- November WHO-FIC approves
ICF-CY 2007-October- ICF-CY launch in
Venice With support from NCBDDD/CDC Assistance of
Dutch, Nordic, North American and Australian WHO
Collaborating Centers
20
Characteristics of ICF-CY

• Consistent ICF framework structure
• Definitions expanded/ clarified
• Inclusion/exclusion criteria expanded
• Inclusion of concept of delay in qualifier
• New content added to unused codes at 4, 5 and 6
  character level
• Majority of new content in Activities
  Participation

21
Structure
ICF
Classification
Parts
Part 1 Functioning and Disability
Part 2 Contextual Factors
Activities and Participation
Body Functions and Structures
Environmental Factors
Personal Factors
Components
Constructs/ qualifiers
Change in Body Structures
Capacity
Performance
Facilitator/ Barrier
Change in Body Functions
Domains and categories at different levels
Item levels 1st 2nd 3rd 4th
Item levels 1st 2nd 3rd 4th
Item levels 1st 2nd 3rd 4th
Item levels 1st 2nd 3rd 4th
Item levels 1st 2nd 3rd 4th
22
ICF-CY Shift from classification of child to
profiling of functional status
b16713.2 Expression of gestural language b144.2
memory function b7653.2 stereotypies d155.3
acquiring skills d160.3 focusing
attention d2304.2 managing changes in daily
routine d710.3 basic interpersonal
relationships e1503 Design construction and
building products and technology for physical
safety of persons
23
ICF/ICF-CY in context of IOM report on Disability
in America

• 3 of 18 recommendations related to ICF/ICF-CY
• 2.1 Adoption of ICF by key agencies (CDC, Census
  Bureau, Bureau of Labor Statistics, Interagency
  Committee on Disability Research) as conceptual
  framework for disability monitoring and aligning
  disability measures with ICF
• 6.1 Collaborative process to identify research
  priorities on ICF environmental factors
• 10.3 Government-wide inventory of disability
  research activities to facilitate cross-agency
  strategic planning and priority setting

24
Addressing IOM recommendations with ICF-CY

• I. Conceptual framework for defining nature of
  agency mandates and efforts
• II. Common language of functional status for
• surveillance and monitoring of disability
• eligibility determination
• information management and transfer
• III. Collaborative initiatives for strategic
  planning and setting research priorities

25
A conceptual framework for defining focus of
agency mandates and research
Health Conditions- (Biomedical, behavioral
research)
Activities (Eligibility, Intervention)
Participation (Intervention, disability
monitoring)
Body Structures Functions (Prevention, Surveil
lance)
Environmental Personal Factors
Factors) (Surveillance, rehabilitation)
26
Common language for coding surveillance
monitoring activities using
Production of surveys, censuses,
eligibility criteria within ICF-CY framework and
content
Profile of childs functional status
environment
Selection of applicable domains and content of
ICF-CY BF, BS, AP, EF
Back-coding of surveys, measures and research
data to ICF-CY content
27
Documenting disability with the qualifier scale
in the ICF-CY

• Impairments of Body Functions/Body Structures
• Limitations of Activities
• Restrictions of participation
• Barriers to environmental factors
• Defined by assignment of severity qualifier to
  code
• 0. No impairment/difficulty
• 1. Mild impairment/difficulty
• 2. Moderate impairment/difficulty
• 3. Severe impairment/difficulty
• 4. Complete impairment/difficulty

28
Expansion of qualifier in ICF-CY to encompass
developmental delay

• Generic qualifier with the negative scale used
  to indicate the extent of magnitude of a problem,
  deviation, loss or delay (Body/Function)
• Generic qualifier with the negative scale used
  to indicate the extent of magnitude of a
  difficulty, problem, restriction or delay
  (Activities/Participation)

29
Documenting disability with the qualifier scale
in the ICF-CY

• Defining qualifier scale as
• not as increasing problem
• but as decreasing state of typical function/
  structure-
• Assignment of qualifier based on measures with
  quantification of severity
• (a) the extent of statistical deviation
  units-standard deviations from mean-e.g IQ scores
• (b)frequency in the population relative to
  normative value- e.g. Body Mass Index

30
Example assigning qualifier to define disability

• d310.XXXX
• d Activity or Participation
• 3 Chapter/communicating
• 10 receivingspoken messages
• Add qualifier after . to define functional
  status/disability
• Order of qualifiers
• 1st- Performance- what an individual does in his
  or her current environment
• 2nd Capacity W/O assistance- an individuals
  ability to execute a task or action
• 3rd Capacity W assistance
• 4th Performance W/O assistance

31
Using of qualifier to monitor functioning and
disability

• TIME 1 TIME 2
• Change of qualifier reduction of severity level
  within code
• (e.g., regulating behaviors within interaction)
• Change of function moving from lower to higher
  level code

d7202.4 Severe limitation/ restriction
d7202.1 Mild limitation/ restriction
d2100.2 Undertaking simple task
d2102.2 undertaking complex task
32
ICF-CY a common language for eligibility
determination under IDEA

• Current IDEA definition
• Children with disabilities means
• (i) children with mental retardation, hearing
  impairments, deafness, visual impairments
  including blindness, deaf-blindness, multiple
  disabilities, speech language impairments,
  serious emotional disturbance, orthopedic
  impairments, autism, traumatic brain injury,
  other health impairments or specific learning
  disabilities and
• (ii) who by reason thereof, need special
  education related services

33
An alternate IDEA definition of disability framed
within ICF-CY

• Children with disabilities means-
• (i) children with functional limitations in
  looking, listening, movement, hand use,
  regulation of activity, behavior, attention,
  affect, interpersonal relationships,
  communication, literacy and numeracy and
• (ii) who by reason thereof, need accommodations
  of the learning environment

34
Early Intervention data handbook- application of
a minimum ICF coreset

• Use of selected ICF d-Codes to describe
  health-related data elements recommended in the
  U.S. Department of Educations Early Intervention
  Data Handbook (Version 1.0).
• http//www.ideadata.org/
• EarlyInterventionDataHandbook.asp

35
Surveillance North Carolina School Youth Risk
Behavior Survey (YRBS)

• Simeonsson, RJ, McMillen, J, McMillen, B
  Lollar, D. (2003). APHA. San Fransisco, 2003.
• In 2001, N2548 students in grades 9-12 statewide
  took High School YRBS however N2333 took
  modified state version
• In 2003, N2553 students in grade 9-12 took
  modified state version
• Included three disability indicator items from
  BRFSS disability module

36
Individual Disability Indicatorsin NC School YRBS

• A disability can be physical, mental, emotional
  or communication related. Do you consider
  yourself to have a disability? (BF)
• Are you limited in any way in any activities
  because of any impairment or health problem?
  (AP)
• Because of any impairment or health problems, do
  you have any problem learning, remembering or
  concentrating? (AP)

37
2001 2003 response rates on YRBS to individual
indicators

• Indicator Yes No Not No
• sure
  response
• Have a disability?
• 2001 13.4 75.7 9.0 1.9
• 2003 14.8 73.6 9.9
  1.6
• Limited in activities?
• 2001 7.8 84.4 3.6
  4.1
• 2003 11.7 82.5 4.0
  1.8
• Trouble learning..?
• 2001 7.2 83.3 4.8 4.8
• 2003 11.2 80.5 5.6 2.7

38
NC YRBS Findings

• Students with disabilities at higher risk on many
  indicators across various domains
• Less likely to have seen health care provider in
  last 12 mo.
• More likely to feel sad and hopeless
• Less likely to perceive self as healthy
• More likely to have considered suicide
• Less likely to perceive QOL as good
• Students unsure about having a disability or
  problems with learning, concentrating or
  remembering are at higher risk on many of the
  same indicators

39
NC YRBS Findings

• Students with disabilities at higher risk for
• Engagement in dangerous or violent behavior
• As perpetrator
• More likely to have carried a weapon to school
• More likely to have had a fight in school
• As victim
• More likely to have been offered drugs
• More likely to have been threatened or injured
• More likely to have property damaged or stolen
• More likely to have ridden with drinking driver

40
Health informatics Tennessee Child Health
Profile project

• Statewide cooperative project of Vanderbilt
  University University of Tennessee funded by
  AHRQ
• Goals
• 1. enhance integration of information systems in
  Tennessee to meet needs of children with special
  health care needs and their families
• 2. make information readily available to parents
  and service delivery providers.

41
Health informatics Tennessee Child Health
Profile project

• Strategies
• A. establish electronic health record to
  integrate data sources across state
• B. Create Child Health Profile of health
  indicators based on ICF-CY
• C. provide secure access for parents and service
  providers on child health status and information
  related to children with special needs or
  disabilities

42
Health informatics Swedish Child health data
project

• Cooperative project of Swedish County Councils
  and School of Public Health, Jönköping University
  
• Goal improve management and transfer of common
  electronic health record between child health and
  school health agencies in Sweden

43
Barnhälsodataprojektet
Nationell samordning av informationshanteringen
inom och mellan barn- och skolhälsovården
43
44
Swedish Child health data project

• Project targets
• 1. What health related information should be
  recorded for every child in child health and
  school health services
• 2. How should this information be recorded in
  electronic health record and managed within and
  across service sectors
• 3. What information technology is needed to
  support this system within service sectors

45
Defining research priorities with ICF/ICF-CY
representative themes

• Framework for child services
• Palisano (2006). Case study-ICF as frame for team
  work with children with motor impairment
• Simeonsson et al., (2003) Components of ICF-CY
  for clinical practice
• Campbell Skarakis-Doyle (2007) Collaborative
  service delivery for children with speech
  language impairments
• Assessing body functions/systems
• Andriesse et al., (2005)- clubfoot assessment
  protocol
• Van Empelen et al., (2004)-functional
  consequences of hemispherectomy
• Eliasson (2005) use of ICF in treatment of hand
  function
• vanBaar et al., (2006)-, functional sequelae of
  burns
• Defining functional status
• Beckung Hagberg (2002). Children with cerbral
  palsy
• Jessen et al., (2003). Impact of childhood
  disability on life family
• Battaglia et al., (2004).Children with cognitive,
  motor complex disabilities

46
Defining research priorities with ICF/ICF-CY
representative themes

• CHILD Research group -Mälardalen Jönköping
  Universities
• Child and Caregiver perceptions of functioning
  and health
• Wilder et al.,(2004) Parent perceptions of
  child-parent interaction
• Erikson Granlund (2004). Students conceptions
  of participation
• Almquist et al., (2006) Young childrens
  perception of health
• Ibragimova et al (2007). Care giver perceptions
  of interaction in non-speaking children
• Childrens participation engagement
• Erikson Granlund (2005). Comparison of
  perceived participation of students with/without
  disabilities
• Almquist Granlund (2005). Participation in
  school activities by students with disabilities
• Almquist (2006) Patterns of engagement in young
  children with/without disabilities
• Erikson et al (accepted). Comparison of
  participation in school activities by students
  with/without disabilities

47
Defining research priorities with ICF/ICF-CY
representative themes

• Documenting intervention outcomes
• Goldstein et al (2004) ICF application as
  enablement framework for practice
• Schenker et al (2006) ICF framework for personal
  assistance and participation
• Ödman Öberg (2006). ICF framed measurement of
  change as a function of two interventions
• Coding applications
• Granlund et al., (2004) Assigning ICF codes to
  extant rating instruments
• Ogonowski et al (2004) Inter-rater reliability in
  assigning codes
• Ostensjo et al (2006). ICF based analysis of PEDI
  concepts and content
• Simeonsson et al., (2006) Joint use of ICD and
  ICF coding of early intervention cohort

48
Recommendations for research initiatives

• Extend studies to apply ICF/ICF-CY into surveys
• McDougall Miller (2003). ICD and ICF codes in
  health and disability surveys of school aged
  children in Canada
• McDougall et al (2004). Chronic physical health
  conditions among Canadian school age children a
  national profile
• Hendershot, Placek Goodman (2006) Mapping ICF
  codes to NHIS questions
• MCHB NCHS SLAITS Survey of Children with
  Special Health Care Needs

49
Recommendations for research initiatives

• Making the use of the ICF-CY simpler and more
  efficient to use (Baxter, 2004)
• Identification of core sets (limited number of
  codes) for practice and research should focus on
  age-groups (0-2 3-56-12 13) and settings (EI,
  habilitation, school..)
• Development of screening and assessment
  instruments that have severity qualifiers
  compatible with ICF-CY
• Comparing human and automated ICF-CY coding of
  child health data (Kukafa et al, 2006)

50
Recommendations for research initiatives

• Refining the concept of Participation related to
  developmental adaptation, having choices,
  developing relationships and finding education..
  (McConachie et al., 2006 Forsyth Jarvis,
  2002)
• Developing measures of childrens physical,
  social and psychological ecologies (Moore,
  Bronfenbrenner )
• Issue of proxy reporting- how to engage child in
  self report (ASK- Young et al., 2000 Almquist,
  2006)

51
From classification of children to -gt
classification of child functional status in
context

• ..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.
• Hobbs (The Futures of Children 1975

52
THANK YOU

• rjsimeon_at_email.unc.edu