Disability Statistics in Canada: A History and Current Results

1. Disability Statistics in Canada:A History and Current Results Andrew MacKenzie Senior Analyst Statistics Canada

2. Presentation Agenda • Overview of Disability Surveys at Statistics Canada • 1986 & 1991 Health and Activity Limitation Survey (HALS) • 2001 Participation Activity Limitation Survey (PALS) • Conceptual Framework of PALS • ICF & ICF-CY • Question development • Overview of 2001 PALS Data • Disability rates in Canada • Impacts on family and future employment • 2006 PALS: Moving Forward • Changes from 2001 PALS • Looking ahead to 2011 PALS

3. Overview of Disability Surveys at Statistics Canada

4. The Beginning of Disability Statistics in Canada • 1986 HALS pioneered development of Canadian disability statistics through survey data • Canada among first to use post-Censal surveys • Locate unique populations from Census information • HALS Target population • children (under 15) and adults (15 years and over) living in households in the 10 provinces plus the territories • Census filter questions developed to identify population with disabilities • Positive & negative responses included in HALS 1986 & 1991

5. The end of HALS • No 1996 disability survey • HALS approach was expensive and inefficient • Only 10% positive responses in NO sample • New definitions of disability from WHO • ICF replaces ICIDH • New policy and research interests • Growth of assistive technology • Changing programs

6. Beginning of PALS • 2001 PALS development began in 1997 • New Census filter questions developed based on WHO definition of disability • New content to reflect emerging policy and research interests • 2001 PALS Target population • children (under 15) and adults (15 years and over) living in households in the 10 provinces who reported an activity limitation in the census • 2006 PALS development began in 2003 • Trend analysis with 2001 PALS • Data collection begins October 30th

7. The Conceptual Framework of PALS

8. Conceptual Framework of PALS • What is a disability? • Issues for PALS • Public perceptions of disability • Overview of the World Health Organization’s ICF • Development • Concepts & building blocks • Implications of the ICF for PALS • ICF as a guide, not 100% • Developing questions from ICF

9. What is a Disability? • Someone who uses a wheelchair all the time? • Deaf? • Someone who uses a wheelchair some of the time? • Depression? • Schizophrenia? • Dyslexia? • Chronic pain? • Need a hearing aid? • Need glasses? • Three more to chew on: • Obesity? • Homelessness? • HIV/AIDS?

10. Opinions of Canadians 2004 Environics Poll, Sponsored by SDC

11. World Health Organization (WHO) • The WHO developed a preliminary system concerning consequences of disease in 1972 • The first edition of ICIDH was published in 1980; reprinted with additional foreword in 1993 • Revision process for ICIDH initiated in 1993 • Evaluation, conferences and field trials • Resulted in development of ICF

12. ICF as an International Standard • To provide ascientific basisfor consequences of health conditions • To establish acommon languageto improve communications • To permit comparison of dataacross: • countries • health care disciplines • services • time • To provide asystematic coding schemefor health information systems

13. Body function & structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors Interaction of Concepts ICF 2001 Health Condition (disorder/disease)

14. WHO Definition of Disability • Disability is defined as: the unsuccessful interaction between a person with an impairment and an unsupportive environment • Environment has four dimensions: • Physical • Social • Financial • Political

15. Building PALS from ICF • PALS follows ICF as a model, but not 100% • Body functions and structures should manifest as activity limitations and participation restrictions • Over 1,000 codes, limited patience of respondent • Defining the PALS universe • Select elements to reflect most common disabilities • Pain & memory not included for kids 0-14, chronic conditions and developmental delay (0-4 only) added

16. Example 1. Agility • ICF Code • d540 Dressing • d5400 Putting on clothes • d5401 Taking off clothes • PALS Question • B57. Do you have any difficulty dressing and undressing yourself?

17. Example 2. Agility • ICF Code • d520 Caring for body parts • d5204 Caring for toenails • PALS Question • B61. Is it physically difficult for you to cut your own toenails?

18. Example 3. Mobility • ICF Code • d415 Maintaining a body position • d4154 Maintaining a standing position • PALS Question • B47. Do you have any difficulty standing in line for more than 20 minutes?

19. Example 4. Communicating • ICF Code • d330 Speaking • PALS Question • B29. Because of a condition or health problem, do you have any difficulty speaking?

20. Example 5. Pain • ICF Code • b280 Sensation of pain • PALS Question • B73. Do you have any pain or discomfort that is ALWAYS present? • B74. Do you have PERIODS of pain or discomfort that REOCCUR from time to time?

21. More Questions From the ICF: • Build a safety net to identify less common disabilities • Do you have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities? • Yes, sometimes • Yes, often • No • Does a physical condition or mental condition or health problem reduce the amount or the kind of activityyou can do: • At home? • At work? • In other activities, for example transportation or leisure? • Yes, sometimes • Yes, often • No

22. Disability Statistics from PALS 2001

23. Disability Rates in Canada by Gender Source: 2001 PALS. Excludes Territories, Reserves and Institutions

24. Disability Rates by Province & Gender, Age 0-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

25. Non-Physical Disability Rates by Province, Age 5-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

26. Rates of Disability Types by Gender, Age 0-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

27. Multiple Disabilities for Children with Learning, Developmental or Emotional Disabilities, Age 5-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

28. Severity of Disability for Non-Physical Disability Types, Age 5-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

29. Children whose parents require help, 2001 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

30. Impacts of Non-Physical Conditions on the Family’s Employment, Age 5-9 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

31. What Does the Future Hold? Labour Market Characteristics of Adults

32. Employment Status – Canadians Aged 15 to 64 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

33. Unemployment Rate By Severity Source: 2001 PALS. Excludes Territories, Reserves and Institutions

34. Disability types in the Labour Force, Ages 15-64 Source: 2001 PALS. Excludes Territories, Reserves and Institutions

35. Differences in Average Employment Income – All Employed With Disability Source: 2001 PALS. Excludes Territories, Reserves and Institutions

36. PALS 2006: Moving Forward

37. PALS 2006 • PALS 2006 will be collected between October 2006 and January 2007 • Target population • children (under 15) and adults (15 years and over) living in households in the 10 provinces and 3 territories who reported an activity limitation in the census • Sample of 35,000 adults, 8,000 children from the YES sample in the 2006 Census • The content will allow for time series comparisons • Results will be available by Winter 2007-08

38. Changes to Adult PALS from 2001 • Addition of the Health Utility Index • Improved questions on care received and needed • Improved questions on aids and assistive devices – repairs, replacement, cost • New content on workplace training • Addition of an internet module • New content on discrimination and societal perception of disability • Improved content on local transportation

39. Changes to Children’s PALS • Addition of the Health Utility Index • Improved questions on care received and needed • Improved questions on aids and assistive devices – repairs, replacement, cost • New content on bullying • Improved content on child care options and limitations • New content on the impact on the parent and the family • Improved content on special education services

40. PALS 2011: Looking Ahead

41. PALS 2011 • Better understanding of false positives • Short-term illnesses or injuries? • Further research into “Quebec Effect” • Language vs. culture • Examine Census filter questions and PALS screening questions for non-physical disabilities • Improve alignment of PALS 2011 with International Standards such as ICF • Not a perfect match with ICF • Revisions to ICF currently underway

42. Questions? For further information, please contact: Andrew MacKenzie Senior Analyst, PALS Survey Statistics Canada (613) 951-2544 andrew.mackenzie@statcan.ca Thank you for your attention!