Title: Monitoring Survey datasets Theme
1Monitoring Survey datasets Theme
- By Patrick Fougeyrollas, Cameron Crawford and
Mihaela Dinca
2Theme 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)
3Theme 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
4Theme 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
5Research 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?
61) 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 -
-
10Even 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 !!
11Why 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
12That 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.
132) What do the datasets tell us about whether the
rights of people with disabilities are being
realized?
14While 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
15What 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
-
-
17Codebooks 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)
18Other possibilities
- Youth in Transition Survey (YITS)
- TBA
19Law policy assessment template
Surveys assessment matrix
Data collection
Data analysis within/cross surveys
Dissemination of findings
20Key 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
21Areas for further analysis
- Access to justice
- Information and communication
- Privacy and family life
22Person-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
23Independent 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
24Education (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)
25Education (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
26Work (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
27Work (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
283) How can data collection be improved to
facilitate disability rights monitoring?
29We 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.
30Why 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. -
31Independent 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
32A conceptual framework for understanding the
determinants of quality of social participation
and exercise of rights
33Progressive 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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