Monitoring Survey datasets Theme

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Monitoring Survey datasets Theme

• By Patrick Fougeyrollas, Cameron Crawford and
  Mihaela Dinca

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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)

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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

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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

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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?

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1) Defining disability
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• 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
  

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• 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.

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• 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

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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 !!

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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

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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.

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2) What do the datasets tell us about whether the
rights of people with disabilities are being
realized?
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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

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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

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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
  

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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)

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Other possibilities

• Youth in Transition Survey (YITS)
• TBA

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Law policy assessment template
Surveys assessment matrix
Data collection
Data analysis within/cross surveys
Dissemination of findings
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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

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Areas for further analysis

• Access to justice
• Information and communication
• Privacy and family life

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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

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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

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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)

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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

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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

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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

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3) How can data collection be improved to
facilitate disability rights monitoring?
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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.
  

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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.

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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
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A conceptual framework for understanding the
determinants of quality of social participation
and exercise of rights
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Progressive monitoring or assessment of
implementation of human rights between Time 1 and
Time 2
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• 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
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• THANK YOU
• QUESTIONS AND COMMENTS