1. Participation Activity Limitation Survey (PALS), 2001 Andrew MacKenzie Senior Analyst - PALS Social and Aboriginal Statistics Division Statistics Canada Presented at the DLI Atlantic Workshop in Wolfville Nova Scotia, April 28-29, 2005

2. Overview of the Presentation: u PALS Overview –Post-Censal survey for people with disabilities u What is a Disability? –Definition of disability u What Does That Mean for PALS? –Who is included or not included in PALS? u Micro-Data Release Committee –If it doesn’t kill you it makes you stronger u The Purpose of the PALS PUMF & Why to Love It –What can you do with the PALS PUMF? –Dirty little secrets & other PALS issues u Pitfalls in Comparing Disability Rates Across Surveys u Questions?

3. PALS Overview u Post-censal survey of persons with disabilities living in Canada u The target population was children (under 15) and adults (15 years and over) living in households in the 10 provinces who reported a disability on the 2001 census u Sample of 35,000 adults, 8,000 children u Response rate of 82.5%

4. 2001 Census Disability Filter Questions u Does this person have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities? –Yes, sometimes –Yes, often –No u Does a physical condition or mental condition or health problem reduce the amount or the kind of activity this person can do: –At home? –At work or at school? –In other activities, for example, transportation or leisure? –Yes, sometimes –Yes, often –No

5. Purpose of PALS? u Governments require information to guide disability policy u The experience of Canadians with disabilities as captured in national surveys provides essential information –For tracking progress –For accountability and reporting to Canadians –For policy and program development u The Participation and Activity Limitation Survey (PALS) is Canada’s principal national survey focusing on persons with disabilities.

6. How Do You Define Disability? u Do you consider someone who uses a wheelchair all the time to have a disability? u What if they need it just some of the time? u What about someone with depression? u Schizophrenia? u Dyslexia? u Chronic pain? u Need a hearing aid? u Need glasses? u Three more to chew on: –Obesity? –Homelessness? –HIV/AIDS?

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

8. Beliefs about disability have varied historically u Punishment from God, a curse, a seer or enigmatic person (traditional beliefs) u Impairment /chronic condition (bio-medical models) u Activity limitation / handicap (rehab-functional models) u Participation restriction (social, rights-based models) –Due to discrimination, environmental barriers u Normal human variation (post-modern, cultural models)

9. The International Classification of Functioning (ICF) provides a standardized framework for conceptualising disability

10. What Does This Mean for PALS? u Follows ICF as a model, but not 100% u Focus is on activity limitations and participation restrictions, not the health condition u Conditions lasting 6 months or more u Use of assistive devices or other technology can remove limitation (hearing aids, glasses, medication) u PALS identifies 10 types of disability: –Hearing, Seeing, Mobility, Agility, Pain, Learning, Memory, Developmental, Psychological, Unknown

11. Micro-Data Release Committee We lived to tell the tale!

12. Micro-Data Release Committee u Suppression of sensitive or visible information –Consultations with researchers, client, and committee u Deal with the Devil –No provincial breakdown u 3 by 3 tables analyses u Disclosure risk analysis u More suppression to make committee happy –What if someone finds a blind surgeon? –Or a daredevil in a wheelchair?

13. How did PALS beat APS & EDS? u Abandon ship!! –Life as a post-Censal at Statistics Canada u More stable funding for PALS 2006 and beyond u APS - searching for 2006 funding u EDS PUMF expected in early summer u New post-Censals for 2006 –Vitality of minority languages –Aboriginal children’s survey

14. Purpose of the PALS PUMF u PALS PUMF meant for tables, not modeling u Production of population estimates u Already has non-disabled people on the file Examples: u What percentage of Canadians have a hearing disability? u How many Canadians did their schooling with a disability? u What types of disabilities are most likely to think they’ve been discriminated against for a promotion?

15. What can you do with the PALS PUMF? u Assistive devices & technology (Section B) u Help with everyday activities (Section C) u Education (Section D) u Employment (Section E) u Social participation (Section F) u Economic profile (Section G) u Derived variables u Census variables

16. Dirty Little Secrets & Other PALS Issues u 39 PALS records missing from the Census master file u Flows in employment section had MAJOR problems u PALS PUMF was string u Lower rates in Quebec - not popular with Quebec u Comparability to other surveys- Pandora’s box

17. Several Other Statistics Canada Surveys Provide Disability Information u The Census (long form) u Survey of Labour and Income Dynamics (SLID) u Canadian Community Health Survey (CCHS) u National Population Health Survey (NPHS) u General Social Survey (GSS) u National Longitudinal Survey of Children and Youth (NLSCY)

18. Variations in Canadian Survey Results What’s the right number? What do you want it to be?

20. Possible Sources of Differences u Sampling (PALS) u Survey context u Proxy responses u Language/culture

23. Questions? Andrew MacKenzie andrew.mackenzie@statcan.ca (613) 951-2544

24. Thank you for your attention!! Andrew MacKenzie andrew.mackenzie@statcan.ca (613) 951-2544