Measuring Progress Toward Inclusion: the child and the environment

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Measuring Progress Toward Inclusionthe child
and the environment

• Don J. Lollar, Ed.D.
• U.S. Centers for Disease Control and Prevention
• National Center on Birth Defects and
• Developmental Disabilities
• Atlanta, Georgia USA
• With acknowledgment to
• Rune J. Simeonsson, Ph.D.,MSPH
• University of North Carolina, Chapel Hill

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United Nations 1989-CONVENTION ON THE RIGHTS OF
THE CHILD

• Preserve the dignity of children as persons
• Respect for the dignity of children as members of
  their community
• CHILDREN FIRST to receive protection, care, and
  assistance
• Right to a family environmentprotection of
  children implies protection of families
• Consideration of cultural heritage

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ARTICLE 23 OF U.N. CONVENTION

• CHILDREN WITH DISABILITIES
• Should enjoy a full life, under conditions to
  ensure dignity, self reliance and participation
• Should have the right to special care and
  assistance for themselves and their caregivers
• Should have assistance provided without cost
  designed for access to education, training,
  health care, rehabilitation and other services to
  achieve social integration and individual
  development

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Salamanca StatementUNESCO World Conference on
Special Needs Education (1994)

• Every child has
• A fundamental right to education
• Unique characteristics, interests, abilities,
  learning needs
• Every child with special education needs must
  have access to mainstream schools
• Education systems should design and implement
  programs accounting for the diversity of needs
• Mainstream schools with this inclusive
  orientation are the most effective in combating
  discrimination, building a welcoming and open
  society and achieving education for all

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Terms

• Measurethis terms describes the how of the
  process, including who is the population
• Progressthis term describes the monitoring of
  the process the direction of change--positive
• Inclusionthis term describes the mission or
  goal the outcome of the process, including
  the characteristics of the setting that help meet
  the goal
• A framework that includes all three would be very
  nice to have available for use by schools
• GOOD CLASSIFICATION IS THE KEY

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Integrating Diverse Elements

• HOW DO WE ACCOMPLISH THIS INTEGRATION?
• IDENTIFY THE CHILDREN WITH EDUCATIONAL NEEDS
• MONITOR THEIR ACADEMIC, SOCIAL, AND EMOTIONAL
  STATUS/PROGRESS
• IDENTIFY EDUCATIONAL SETTINGS THAT FACILITATE OR
  HINDER INCLUSION
• MONITOR THE CHANGES IN THESE ENVIRONMENTS
• PARTNER AND COMMUNICATE WITH OTHER SERVICES OR
  PROGRAMS SERVING THE CHILD AND FAMILY
• A FRAMEWORK FOR INTEGRATION IS THE WORLD HEALTH
  ORGANIZATION SYSTEM

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INTERNATIONAL CLASSIFICATION OF FUNCTIONING,
DISABILITY, HEALTH--ICF

• Toward a common and shared language for children
  and youth
• More than anything, the ICF is based on the
  value of inclusionBy adopting ICF as a basis for
  its policies and legal framework, countries
  therefore do more than taking up a new tool. They
  subscribe to an inclusive, equitable and
  humanistic view of health. They accept the right
  of disabled to be a natural part of society.
  (Gro Brundtland, WHO, 2002)
• THANKS dlollar_at_cdc.gov

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International Classification of Functioning,
Disability, Health (ICF)

• Approved by World Health Congress in 2001
• ICF-CY (Children and Youth) approved in 2007
• Uses of ICF and ICF-CY
• CLINICAL assess needs, evaluate progress and
  interventions
• RESEARCHmeasure outcomes, impact of
  environmental factors on activity limitations and
  societal participation
• SOCIAL POLICYsocial security planning,
  environmental design, assessment, and
  implementation
• EDUCATIONALassess and monitor function and level
  of inclusion and participation
• STATISTICAL collecting data for population
  surveys or administrative data
• How does ICF-CY help monitor progress toward
  inclusion?

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How does ICF-CY help measure progress toward
inclusion?

• A common, universal language shared across
  professional disciplines (education, social work,
  psychology) and settings (schools, clinics,
  social services)
• A system for describing how the child is
  functioning
• assessment
• intervention planning to improve participation
• outcome measurement, emphasizing inclusion
• A system for classifying Environmental (e.g.
  school) characteristics that facilitate inclusion
  and participation

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ICF CONCEPTS

• Body doesnt function properly is impaired
• Personal activities are limited
• Participation in life situations is restricted
• Environment affects all dimensions of functioning
• Qualifiers describe extent or magnitude of a
  concernfor E, includes facilitation level
• Universal 0no problem thru 4complete problem

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International Classification of Functioning,
Disability, Health--components
Body Functions Structures
Activities Participation
Environmental Factors
Products Technology Natural
environment Support Attitudes Services and
systems Policies
Mental Sensory Voice and speech Respiratory
Digestive Neuromuscular
Learning Communication Mobility Self-care In
terpersonal Life Areasschool Community and
social
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ICF-CY and UN Convention Monitoring

• ACTIVITIES dimensions allow identification of
  childs limitations in function at home or
  schoollearning, communication, mobility,
• PARTICIPATION component allows focus on the
  outcomes of the UN Conventione.g. going to
  school, playing with friends, inclusion in
  classes,.
• ENVIRONMENT factors allow systematic
  identification of barriers and facilitators in a
  childs school, neighborhood, community, etc.

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Developmental core set children lt3yrsU.S.
OSEP Eligibility criteriaEarly Intervention
Data Handbook

• d160 Focusing attention
• d1750 Solving simple problems
• d329 Communicating-Receiving Information
• d330 Speaking 
• d349 Communication 
• d4103 Sitting 
• d4104 Standing
• d435 Moving objects with lower extremities
• d440 Fine hand use
• d445 Hand and arm use
• d450 Walking 
• d4550 Crawling
• d465 Moving around using equipment
• d530 Toileting

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ICF-CY Participation codes relating to
Inclusion (examples)

• Major Life Areaschapter 8
• Moving into preschool educational programme d8150
• Progressing in preschool educational programme
  d8153
• Progressing in education programme d8202
• Participation in school, such as attending
  classes, interacting with peers and teachers,
  fulfilling duties of being a student
• Terminating educational programme or school
  levels d8203
• Leaving school to enter next level of school,
  work, employment or other domains of adult life
• Engagement in play d880
• Shared cooperative play d8803
• Joining others in activities with toys, games,
  etc.

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ICF-CY Environmental factors codes affecting
Inclusion (examples)

• e310 support of immediate family
• e315 support of extended family
• e320 support of friends
• e340 support of personal care providers
• e355 support of health professionals
• e410 attitudes of family favorable
• e580 health services available
• e586 special education services available

• e110 food
• e1101 drugs/medicine
• e115 personal use, soap, diapers
• e120 transportation
• e127 toys/materials for play
• e130 educational materials
• e155 home accessible
• e255 climate acceptable

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Example ICF-CY codesAttention
Deficit-Hyperactivity Disorder (ADHD)
Health Condition (ADHD)
Participation (participation restrictions) Movin
g into education programs Attending to and
adjusting in school Succeeding in
education Leaving school Community, social, and
civic life Recreation and leisure Related school
activities
Body Structures Functions (impairments) Intellec
tual functions Energy and driveimpulse
control Inattention Poor memory Psychomotor
control Emotional regulation Organization Judgment
Problem solving
Activities (activity limitation) Reading Writing C
alculating Carrying out single or multiple
tasks Handing stress Managing ones own
behavior Communication Interpersonal interactions
and relationships
Environmental factors Education services and
systems Special education services and
systems Health services and systems
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Identifying intervention outcomes related to
inclusion
Activities
Participation

• Improvement
• in personal functioning
• social relationships
• -D880 play
• -D350 conversation
• -D710 interpersonal relationships
• -D7504 relating with peers
• -D7604 family relationships

• Improvement in school functioning
• d166 reading
• d170 writing
• d172 calculating
• d160 focusing attention
• d175 solving problems
• d310 communicating
• d330 speaking

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Documenting change/progress

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

d7202.1 Mild limitation/ restriction
d7202.4 Severe limitation/ restriction
d2100.2 Undertaking simple task
d2102.2 undertaking complex task
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Environment codingbarriers and facilitators to
inclusion

• Examples
• e130.2 educational materialsmoderate barrier
• e1302 educational materialsmoderate facilitator
• e120.4 transportationcomplete barrier
• e120.4 transportationcomplete facilitator

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Profiles of activities by indicator and severity
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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

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Use of ICF-CY to identify children with
individual needs QATAR

• Project Development of system to describe
  student population on basis of functional
  characteristics in independent schools in Qatar
• Construction of inventory of 38 ICF-CY codes (BF
  AP) each rated on scale from 1 appropriate for
  age to 5extreme limitation/difficulty
• Teachers as key respondent
• Pilot project conducted in 4 primary level
  schools with 2500 students
• Results show utility of ICF-CY for this purpose

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Evaluating School Environments and Participation
of Students with Disabilities (Simeonsson, et
al., 2001, Disability and Rehabilitation)

• National Survey of School Environments
• 1180 teachers of students with disabilities in
  the U.S.A.
• Teacher report of school characteristics and
  anonymous reports of one student with whom they
  work
• 56 school environment questions
• 27 activities common to school settings
• Results show
• Students with severe levels of limitation less
  likely to participate in activities than students
  with mild limitations
• Higher participation associated with higher
  quality of life
• Students with attention or learning problems
  participate more than physical or neurological
  problems
• Small schools associated with lower levels of
  inclusion
• Conducive environment for participation were
  large suburban schools with 70 students in spec
  ed and enough s.e. teachers

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ICF-CY next steps for education inclusion

• Map instruments to ICF-CY domains and codes
• Develop ICF-CY based screening instruments
• Develop of assessment measures compatible with
  ICF-CY
• Introduce ICF-CY codes into education surveys
• Introduce ICF-CY codes into education information
  systems
• Address proxy reporting- how to engage child in
  self report

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• Don Lollar, Ed.D.
• CDC/NCBDDD, Atlanta, GA, USA
• dlollar_at_cdc.gov
• Rune Simeonsson, Ph.D.
• University of North Carolina, Chapel Hill, USA
• rjsimeon_at_email.unc.edu