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 survey’s 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 WHO’s 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 ávis 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. 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 Person-level general demographic information (selected)

23. 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 Independent living & participation (selected indicators)

24. 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) Education (selected indicators)

25. 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 child’s disability? Any difficulty obtaining education services and reasons for difficulty Types of difficulty arranging special education services Education (selected indicators)

26. 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 Work (selected indicators)

27. 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 Work (selected indicators)

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. Interaction 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 Social Participation Quality of Exercise of Rights • - Civil - Economic • Social - Cultural • Full exercise Non exercise • Activities of daily living • Social roles • Full participation Total exclusion Development of indicators crosswalk

32. Physical and social Environmental factors Personal factors • - Identity factors • Organic systems • Functional capabilities • Societal / Macrosystemic • Community / Mesosystemic • Domestic / Microsystemic Interaction Life Habits / Situations • Quality of social participation • Quality of exercise of HumanRights A conceptual framework for understanding the determinants of quality of social participation and exercise of rights

33. T2 T2 T1 T1 T2 T1 Progressive monitoring or assessment of implementation of human rights between Time 1 and Time 2

34. Monitoring Implementation of Rights (Conventions) at the national level • 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

35. THANK YOU • QUESTIONS AND COMMENTS