Measuring Disability: Results from the 2001 Census and the 2001 PostCensal Disability Survey Statist

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Measuring Disability Results from the 2001
Census and the 2001 Post-Censal Disability
SurveyStatistics CanadaJanuary 10, 2003
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Post-Censal Survey Approach

• First phase 2001 Census
• Second phase Participation and Activity
  Limitation Survey - PALS 2001

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Objective

• develop a comprehensive database on persons with
  disabilities
• to assist social policy development by
  governments of all levels
• to support research in the area of disability

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Survey Description

• PALS collects information on
• type and severity of disabilities
• needs and unmet needs for assistive devices and
  social support
• disability impacts in various environments home
  life school or work community life
• socio-demographic characteristics of persons with
  disabilities

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Definition of Disability

• Conceptual framework provided by the
  International Classification of Functioning,
  Disability and Health (ICF)
• an activity limitation or participation
  restriction associated with physical or mental
  conditions or health problems, recognizing the
  role of the environment as providing barriers or
  facilitators

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PALS Target Population

• Adults (15 and over) and children (under 15)
• residing in households
• residing in all provinces
• reporting an activity limitation
• Exclusions
• population in three northern territories
• institutional residents
• persons living on First Nations reserves

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Overview of Methodology

• Two-phase survey
• Population selected through two filter questions
  on 2001 Census questionnaire
• Respondents contacted by phone about four months
  after census
• PALS repeats filter questions and uses additional
  disability screening questions

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2001 Filter Questions

• 1. Does this person have any difficulty hearing,
  seeing, communicating, walking, climbing stairs,
  bending, learning or doing any similar
  activities?
• - Yes, sometimes
• - Yes, often
• - No

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2001 Filter Questions (cont d)

• 2. Does a physical condition, mental condition or
  health problem reduce the kind or amount of
  activity this person can do
• At home? - Yes, sometimes
• - Yes, often
• - No
• At work or at school? - Yes, sometimes
• - Yes, often
• - No
• - Not applicable
• In other activities, such as transportation or
  leisure?
• - Yes, sometimes
• - Yes, often
• - No

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2001 PALS Operational Definition
1. Selection of sample of positive respondents to
census filter questions 2. Population with
disabilities YES to filters
at census and YES to filters at PALS or YES to
detailed disability screening questions in PALS
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Operational Definition
Not sampled
NO
Filter Questions (Census)
Filter Questions (PALS)
YES
YES
NO
Screening Questions (PALS)
Not in population
In population
YES
NO
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Data Collection

• Mostly telephone interviews
• Personal interviews when required because of
  activity limitation
• Proxy interviews kept to minimum
• Paper and pencil questionnaires
• September 2001 to January 2002

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Sample Size

• Total sample size 43,000
• 35,000 adults
• 8,000 children
• Response rate 82.5

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Adult Questionnaire Content

• Detailed disability screening questions
• derived variables include type and severity of
  disability
• Aids and assistive devices required
• needs and unmet needs
• information on costs
• Help with everyday activities
• needs and unmet needs
• information on providers and costs

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Adult Questionnaire (cont d)

• Impacts on education
• aids and services required
• Employment status
• aids and services required
• impacts on employment
• Social participation
• transportation, leisure, housing
• Economic characteristics
• sources of income, insurance coverage

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Child Questionnaire Content

• Detailed disability screening questions
• derived variables include type and severity of
  disability
• Aids and assistive devices required
• needs and unmet needs
• information on costs
• Help with everyday activities
• including impact on the family

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Child Questionnaire (cont d)

• Child care issues
• Impacts of disability on schooling
• Impacts on leisure and recreation
• Accommodations required in the home
• Transportation requirements
• Economic characteristics of the family

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SEVERITY SCALE
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1. Adult Severity Scale1.1 Disability types and
variables

• 10 disability types
• hearing, seeing, speech, mobility, agility, pain,
  learning or developmental, memory, psychological
• Points for each functional limitation within each
  disability type
• ex. difficulty hearing in a conversation with one
  person, at least 3 persons, telephone conversation

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Number of functional limitations and contexts for
each disability type
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1.2 Scoring Method

• One point for each functional limitation weighted
  by the product of the frequency and the intensity
• frequency yes sometimes (1 pt), yes often (2
  pts)
• intensity some difficulty (1 pt), a lot of
  difficulty (2 pts), completely unable (3 pts)
• Mean number of points per applicable context
• 0 to 1 standardised score for each disability
  type
• Combining all applicable functional limitations
• Scores for each type added up and divided by 9
• global score between 0 and 1

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Distribution of Severity Score
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1.3 Cut-off points

• No natural cut-offs in global score distribution
• Need simple method, easy to eplain
• First cut-off where score curve accelerates
• Cut-off very close to 1/9 (max pts for one type
  only)
• Subdivision of the 2 groups into 4 groups
• Mild score lt 1/18
• Moderate (1/18 ?score lt 1/9)
• Severe (1/9 ?score lt 2/9)
• Very severe score ? 2/9

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2. Children Severity Scale

• Same principles as adult scale
• One scale for 0-4 years old
• 4 disability types hearing, seeing,
  developmental delay, chronic condition
• 2 severity groups only
• One scale for the 5-14 years old
• 9 disability types hearing, seeing, speech,
  walking, dexterity, learning or developmental
  disability, psychological, chronic condition
• 4 severity groups as for the adults

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RESULTS

• 2001 Census
• 2001 PALS

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NEXT STEPS

• Further analysis of disability rates from filter
  questions in surveys
• development of severity scale for filter
  questions
• analysis of characteristics of disabled
  population identified in various surveys