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Monitoring Survey datasets Theme

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Title: Monitoring Survey datasets Theme


1
Monitoring Survey datasets Theme
  • By Patrick Fougeyrollas, Cameron Crawford and
    Mihaela Dinca

2
Theme members
  • Patrick Fougeyrollas, theme leader, L'Institut de
    Réadaptation en Déficience Physique de Québec
    (IRDPQ)
  • Cameron Crawford, theme leader, Canadian
    Association for Community Living
  • Marcia Rioux, Project Director, York University
  • Mihaela Dinca, Project Coordinator
  • Organizational Partners
  • Office for Disability Issues (ODI)
  • Statistics Canada (informal Partner)
  • York Institute for Social Research (ISR)

3
Theme 4 Survey datasets monitoring
  • YEARS 1 and 2 Research and Monitoring Activities
    2006-2008
  • WORK PLAN
  • 1) Definition of a five year work plan by the
    research team
  • 2) Discussion of the usefulness of a coherent
    disability framework for organizing statistical
    indicators to track disability rights
  • 3) Development of a matrix distinguishing
    outcomes exercise of rights/social
    participation and their determinants personal
    factors and environmental factors
  • 4) Use of the Law and Policy Template, organized
    along the human rights principles, to identify
    relevant indicators in each dimension of the
    systemic disability creation process

4
Theme 4 Survey datasets monitoring
  • YEARS 1 and 2 Research and Monitoring Activities
    2006-2008
  • WORK PLAN
  • 5) Description and applications of the Template
    and a matrix of indicators to population surveys
  • 6) Analysis of the actual questions and
    indicators
  • 7) Definition of needed questions and indicators
    for fully documenting specific categories of
    rights/life situation outcomes

5
Research questions
  • 1) How is disability defined across surveys?
    What impact does the surveys context have on the
    likelihood of respondents self-reporting a
    disability?
  • 2) Do current survey datasets collect data that
    permit an assessment of how and whether the
    rights of people with disabilities are being
    realized?
  • 3) How can data collection be improved to
    facilitate disability rights monitoring?

6
1) Defining disability
7
  • Disability results from the interaction between
    persons with impairments and attitudinal and
    environmental barriers that hinder their full and
    effective participation in society on an equal
    basis with others
  • (Preamble (c) Convention)
  • Need to distinguish between what belongs to the
    individuals, what belongs to environmental
    factors and what belongs to rights outcomes

8
  • Improving the exercise of rights and social
    participation urges us to identify environmental
    barriers in interaction with the personal or
    functional characteristics (differences) and
    needs of people with disabilities.

9
  • Population surveys and WHOs ICIDH or ICF
    frameworks. However
  • Except for an implied definition behind the very
    high level disability filters that are now
    quite common to many Statistics Canada surveys,
    there is no other common definition of what
    comprises disability across those surveys.
    E.g.,
  • Detailed disability screening questions in PALS
    vs. Health Utility Index questions in the CCHS
    quite different approaches!
  • There are no common detailed components of
    disability across the surveys
  • Detailed operational definitions are mainly
    grounded in health problems. Therefore, many
    indicators are still anchored in the biomedical
    or individual model of disability

10
Even where high-level operational definitions are
consistent
  • These are very blunt indicators of disability
    and disability rates vary considerably across
    surveys.
  • For example, disability rates for adults 15 years
    and older
  • PALS (2001) 14.6
  • CCHS (2003) 31.9 !!

11
Why such variation?
  • Disability rates vary owing to factors such as
  • Survey context
  • Cultural factors
  • Positioning of high-level disability filter
    questions on the survey (i.e., where they fall in
    relation to other questions)
  • Other factors that are NOT well understood at
    present

12
That said
  • While there is variation in rates of disability
    across surveys, within surveys there is not much
    change in terms of wording, positioning, etc. of
    broad disability questions
  • Using cross-sectional files, it should be
    possible to track long-term trends within surveys
    over time. This will be a meaningful exercise.
    E.g.,
  • employed in CCHS?
  • employed in PALS?
  • employed in SLID?
  • Are all the data moving in the same general
    direction (e.g., towards higher levels of
    employment)? If so, THAT tells us something
    significant based on disparate data sources.

13
2) What do the datasets tell us about whether the
rights of people with disabilities are being
realized?
14
While disability rates vary due to a several
factors
  • The surveys DO tell us meaningful things
  • Depending on the particular survey, these CAN
    shed light on personal factors, environmental
    factors and the social participation of people
    with disabilities vis á vis others

15
What have we done so far?
  • Taking the National Law and Policy Assessment
    Template, we have made good progress at teasing
    out
  • The kinds of person-level demographic information
    that we think would be useful / necessary
  • Indicators of social participation, which we take
    as proxy indicators of the exercise of human
    rights
  • Indicators of facilitators/obstacles (enablers/
    barriers) to social participation and to the
    exercise of human rights

16

The Matrix as a tool for assessing and improving
surveys in relations with rights
  • This is a valuable tool for identifying gaps in
    information provided by existing surveys and for
    assessing with conceptual coherency how the
    rights of PWD are being realized
  • It can be used as a global tool to assess
    population surveys in various national contexts
    and can help formulate cross-national comparisons

17
Codebooks analyzed to date for indicators
  • Survey of Labour and Income Dynamics (SLID
    adults)
  • National Population Health Survey and Canadian
    Community Health Survey (NPHS CCHS have data
    for some children but mainly surveys of of
    adults)
  • Participation and Activity Limitation Survey
    (PALS children and adult components)
  • General Social Survey (GSS adults)
  • Social support aging (cycle 16)
  • Victimization (cycle 18)
  • Workplace and Employee Survey (WES adults)

18
Other possibilities
  • Youth in Transition Survey (YITS)
  • TBA

19
Law policy assessment template
Surveys assessment matrix
Data collection
Data analysis within/cross surveys
Dissemination of findings
20
Key subject area explored in detail to date for
indicators on surveys
  • Independent living and participation (political,
    cultural, recreational)
  • Education
  • Accessibility (of built environments)
  • Income security and support services
  • Health, habilitation and rehabilitation
  • Work

21
Areas for further analysis
  • Access to justice
  • Information and communication
  • Privacy and family life

22
Person-level general demographic information
(selected)
  • Age
  • Gender
  • Province/territory
  • Rural/urban
  • Provincial health district
  • City/town on PUMF
  • Home owner/rental status
  • Family size ( persons in household)
  • Marital status
  • Race/ethnicity/visible minority status
  • Immigrant status
  • Disability status (Y/N)
  • Type of disability
  • Severity of disability
  • Cause of disability
  • Duration of disability

23
Independent living participation (selected
indicators)
  • Indicators of social participation
  • Involvement in self-help groups
  • Involvement in voluntary activities (including
    specific types of activities)
  • All hours of volunteer activities
  • Frequency of involvement in various forms of
    sport and other recreational activities
  • Facilitators / Obstacles
  • Need vs. get all help needed with everyday tasks
    because of disability
  • Need vs. get all aids/devices required
  • Difficulties using local transportation services
  • Community accessibility (incl. perceived
    barriers)
  • Reasons preventing more involvement in leisure
    active in the community

24
Education (selected indicators)
  • Indicators of social participation
  • Currently enrolled at school
  • Currently enrolled as full-time/part-time student
  • Took courses towards degree, certificate or
    diploma in reference period
  • Highest level of education achieved
  • Type of certification received in reference year
  • Years of formal education
  • Type of educational institution in which enrolled
    in reference year
  • Took work-related training in past 5 years
  • Type of educational placement (regular, special,
    combination)

25
Education (selected indicators)
  • Facilitators / Obstacles
  • Reasons for not taking sought-for work-related
    training
  • denied training because of disability
  • Education interrupted because of disability
  • Had to go to another community for education
  • Need for vs. availability of disability supports
    for education
  • School is welcoming of supportive of parents?
  • School is accommodating of childs disability?
  • Any difficulty obtaining education services and
    reasons for difficulty
  • Types of difficulty arranging special education
    services

26
Work (selected indicators)
  • Indicators of social participation
  • Employed when survey conducted
  • employed all year
  • Full time/part time employment status
  • Number of paid jobs in reference period
  • Relative employment population ratio (to show
    relative position of PWD to others, taking into
    account general economic/ employment trends)
  • Relative wages population ratio (to show
    relative position of PWD to others, taking into
    account contraction/expansion in the economy and
    wages)
  • Proportion in various occupational groupings
  • Proportion in various economic/industrial sectors
  • All hours worked for pay in the year

27
Work (selected indicators)
  • Facilitators / Obstacles
  • Number/proportion needing job accommodations
  • Proportion receiving job accommodations needed
    for employment
  • Using all education and skills at job?
  • employed by type of/any job accommodation
    required
  • Barriers to employment faced by those not in
    labour force or who have retired early from
    employment (PALS 2006)
  • terminated because of disability
  • refused a job because of disability

28
3) How can data collection be improved to
facilitate disability rights monitoring?
29
We need a clear, consistent conceptual framework
  • We need a conceptual framework for clearly
    distinguishing components in the systemic process
    for ensuring human rights.
  • All the steps envisionned for the Survey Dataset
    Monitoring Theme are designed in the light of
    human rights principles, the holistic conceptual
    approach of the whole project.
  • Ideally, this would be complemented with a
    coherent conceptual framework for disability so
    data can be attributed to specific systemic
    dimensions of the social construction of
    disability.

30
Why the Disability Creation Process (DCP)
conceptual framework?
  • The DCP, in agreement with the social model of
    disability, fully recognizes the inclusion of
    environmental factors in human development and in
    the disability creation process.
  • Sharing several convergences with ICF for its
    systemic and universal approach, its main
    strength is a mutual exclusivity of its concepts
    and components (capabilities vs. life
    situations), making it impossible to put the
    responsibility for social participation and the
    exercise of rights on the individual, only.
  • It lends itself to a diachronic (time-sensitive)
    perspective for articulating and assessing
    sociopolitical change.

31
Independent Variables
Independent Variables
  • - Personal factors
  • Populations with impairments and
  • functional limitations
  • Environmental Barriers and facilitators
  • Quality of formal contextual recognition
  • and insurance of exercise of human rights

A conceptual framework for understanding the
determinants of quality of social participation
and exercise of rights
Quality of Exercise of Rights
Quality of Social Participation
  • - Civil - Economic
  • Social - Cultural
  • Full exercise Non exercise
  • Activities of daily living
  • Social roles
  • Full participation Total exclusion

Development of indicators crosswalk
32
A conceptual framework for understanding the
determinants of quality of social participation
and exercise of rights
33
Progressive monitoring or assessment of
implementation of human rights between Time 1 and
Time 2
34
  • Time one first picture distinguishes the
    characteristics of the population with
    disabilities the macro and meso environmental
    barriers/facilitators and the information on
    social participation and exercise of rights of
    populations with and without disabilities
  • First Action Plan identifying goals to reduce
    environmental barriers and their relations with
    expected targets of improved quality of social
    participation and exercise of rights
  • Time 2 and so on Monitoring the progression in
    the three components of the framework, outcomes
    and expected adjustments of action plans

Monitoring Implementation of Rights (Conventions)
at the national level
35
  • THANK YOU
  • QUESTIONS AND COMMENTS
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