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Participation Activity Limitation Survey (PALS), 2001
Andrew MacKenzieSenior Analyst - PALSSocial and Aboriginal Statistics DivisionStatistics Canada
Presented at the DLI Atlantic Workshop in Wolfville Nova Scotia, April 28-29, 2005
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?
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%
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
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.
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?
Opinions of Canadians
Is homeless
Has HIV/AIDS
Is obese
Difficulty with social interactions
Has difficulty climbing stairs
Requires a hearing aid
Has chronic depression
Has difficulty remembering things
Walks with a cane
Has difficulty learning new things
Experiences chronic pain
Has limited vision with glasses or contacts
Has difficulty speaking
Uses a wheelchair some of the time
Is deaf
Uses a wheelchair all the time 95
89
79
78
74
72
69
69
67
67
67
65
49
44
42
31
2004 Environics Poll, Sponsored by SDC
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)
The International Classification of Functioning (ICF) provides a standardized framework for conceptualising disability
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
Micro-Data Release Committee
We lived to tell the tale!
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?
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
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?
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
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
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)
Variations in Canadian Survey Results
What’s the right number?What do you want it to be?
Disability Rates for Major Surveys, Ages 16-102, 2001
14.8%
31.3%
20.5%
18.5%
0% 5% 10% 15% 20% 25% 30% 35%
PALS
CCHS
SLID
Census
Disability Rate
Possible Sources of Differences
Sampling (PALS) Survey context Proxy responses Language/culture
Disability Rate by Survey, 2001 (16-102)
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
16-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Age Group
Dis
ab
ility
Ra
te
Census
SLID
CCHS
PALS
Disability Rate by Questionnaire Language and Province, 2001 Census
0
5
10
15
20
25
NFLB
P.E.I.
N.S.
N.B.
Que.
Ont.
Man
.
Sask.
Alta.
B.C.
Province
English
French