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

Questions?

Andrew MacKenzieandrew.mackenzie@statcan.ca(613) 951-2544

Thank you for your attention!!

Andrew MacKenzieandrew.mackenzie@statcan.ca(613) 951-2544