Participation Activity Limitation Survey (PALS), 2001

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

3. PALS Overview • Post-censal survey of persons with disabilities living in Canada • 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 • Sample of 35,000 adults, 8,000 children • Response rate of 82.5%

4. 2001 Census Disability Filter Questions • Does this person 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 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? • Governments require information to guide disability policy • 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 • The Participation and Activity Limitation Survey (PALS) is Canada’s principal national survey focusing on persons with disabilities.

6. How Do You Define Disability? • Do you consider someone who uses a wheelchair all the time to have a disability? • What if they need it just some of the time? • What about someone with depression? • Schizophrenia? • Dyslexia? • Chronic pain? • Need a hearing aid? • Need glasses? • 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 • Punishment from God, a curse, a seer or enigmatic person (traditional beliefs) • Impairment /chronic condition (bio-medical models) • Activity limitation / handicap (rehab-functional models) • Participation restriction (social, rights-based models) • Due to discrimination, environmental barriers • 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? • Follows ICF as a model, but not 100% • Focus is on activity limitations and participation restrictions, not the health condition • Conditions lasting 6 months or more • Use of assistive devices or other technology can remove limitation (hearing aids, glasses, medication) • 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 • Suppression of sensitive or visible information • Consultations with researchers, client, and committee • Deal with the Devil • No provincial breakdown • 3 by 3 tables analyses • Disclosure risk analysis • 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? • Abandon ship!! • Life as a post-Censal at Statistics Canada • More stable funding for PALS 2006 and beyond • APS - searching for 2006 funding • EDS PUMF expected in early summer • New post-Censals for 2006 • Vitality of minority languages • Aboriginal children’s survey

14. Purpose of the PALS PUMF • PALS PUMF meant for tables, not modeling • Production of population estimates • Already has non-disabled people on the file Examples: • What percentage of Canadians have a hearing disability? • How many Canadians did their schooling with a disability? • 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? • Assistive devices & technology (Section B) • Help with everyday activities (Section C) • Education (Section D) • Employment (Section E) • Social participation (Section F) • Economic profile (Section G) • Derived variables • Census variables

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

17. Several Other Statistics Canada Surveys Provide Disability Information • The Census (long form) • Survey of Labour and Income Dynamics (SLID) • Canadian Community Health Survey (CCHS) • National Population Health Survey (NPHS) • General Social Survey (GSS) • 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 • Sampling (PALS) • Survey context • Proxy responses • 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