Measuring Disability: Results from the 2001 Census and the 2001 Post-Censal Disability Survey

Statistics CanadaJanuary 10, 2003

Post-Censal Survey Approach

First phase: 2001 CensusSecond phase: Participation and Activity

Limitation Survey - PALS 2001

Objective

develop a comprehensive database on persons with disabilities:

to assist social policy development by governments of all levels

to support research in the area of disability

Survey Description

PALS collects information on: type and severity of disabilities needs and unmet needs for assistive devices and

social support disability impacts in various environments:

home life; school or work; community life socio-demographic characteristics of persons

with disabilities

Definition of Disability

Conceptual framework provided by the International Classification of Functioning, Disability and Health (ICF)

an activity limitation or participation restriction associated with physical or mental conditions or health problems, recognizing the role of the environment as providing barriers or facilitators

PALS Target PopulationAdults (15 and over) and children (under

15): residing in households residing in all provinces reporting an activity limitation

Exclusions: population in three northern territories institutional residents persons living on First Nations reserves

Overview of MethodologyTwo-phase surveyPopulation selected through two filter

questions on 2001 Census questionnaireRespondents contacted by phone about four

months after censusPALS repeats filter questions and uses

additional disability screening questions

2001 Filter Questions

1. Does this person have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities?

- Yes, sometimes

- Yes, often

- No

2001 Filter Questions (cont ’d)2. Does a physical condition, mental condition or health problem

reduce the kind or amount of activity this person can do:At home? - Yes, sometimes

- Yes, often- No

At work or at school? - Yes, sometimes- Yes, often- No- Not applicable

In other activities, such as transportation or leisure?- Yes, sometimes- Yes, often- No

2001 PALS Operational Definition1. Selection of sample of positive respondents to census filter questions

2. Population with disabilities = YES to filters at census and

YES to filters at PALS orYES to detailed disability screening questions in PALS

NO

YES

Not sampled

Filter Questions (PALS)

YES

In population

NOScreening Questions (PALS)

YES NONot in population

Filter Questions (Census)

Operational Definition

Data Collection

Mostly telephone interviewsPersonal interviews when required because

of activity limitationProxy interviews kept to minimumPaper and pencil questionnairesSeptember 2001 to January 2002

Sample Size

Total sample size = 43,000 35,000 adults 8,000 children

Response rate: 82.5%

Adult Questionnaire Content

Detailed disability screening questions derived variables include type and severity of

disability

Aids and assistive devices required needs and unmet needs information on costs

Help with everyday activities needs and unmet needs information on providers and costs

Adult Questionnaire (cont ’d)Impacts on education

aids and services requiredEmployment status

aids and services required impacts on employment

Social participation transportation, leisure, housing

Economic characteristics sources of income, insurance coverage

Child Questionnaire Content

Detailed disability screening questions derived variables include type and severity of

disability

Aids and assistive devices required needs and unmet needs information on costs

Help with everyday activities including impact on the family

Child Questionnaire (cont ’d)

Child care issuesImpacts of disability on schoolingImpacts on leisure and recreationAccommodations required in the homeTransportation requirementsEconomic characteristics of the family

SEVERITY SCALE

1. Adult Severity Scale1.1 Disability types and variables

10 disability types: hearing, seeing, speech, mobility, agility, pain, learning

or developmental, memory, psychological

Points for each functional limitation within each disability type

ex. difficulty hearing in a conversation with one person, at least 3 persons, telephone conversation

Number of functional limitations and contexts for each disability type

Disability type Functionallimitations

Contexts

1. Hearing2. Seeing

32

GeneralGeneral

3. Speech4. Mobility

25

Fami., friends, serv., othersGeneral

5. Agility6. Pain

71

GeneralHome, work, school, other

7. Learning8. Memory

11

Home, work, school, otherHome, work, school, other

9. Developmental10. Psychological

11

Home, work, school, otherHome, work, school, other

1.2 Scoring MethodOne point for each functional limitation weighted

by the product of the frequency and the intensity frequency: yes sometimes (1 pt), yes often (2 pts) intensity: some difficulty (1 pt), a lot of difficulty (2

pts), completely unable (3 pts) Mean number of points per applicable context 0 to 1 standardised score for each disability type

Combining all applicable functional limitations

Scores for each type added up and divided by 9 global score between 0 and 1

Distribution of Severity Score

0

0,05

0,1

0,15

0,2

0,25

0,3

0,35

0,4

0 10 20 30 40 50 60 70 80 90 100

PERCENTILE

SE

VE

RIT

Y S

CO

RE

1.3 Cut-off points

No natural cut-offs in global score distributionNeed simple method, easy to eplainFirst cut-off where score curve accelerates

Cut-off very close to 1/9 (max #pts for one type only)

Subdivision of the 2 groups into 4 groups Mild score < 1/18 Moderate (1/18 score < 1/9) Severe (1/9 score < 2/9) Very severe score 2/9

2. Children Severity ScaleSame principles as adult scaleOne scale for 0-4 years old

4 disability types : hearing, seeing, developmental delay, chronic condition

2 severity groups only

One scale for the 5-14 years old 9 disability types: hearing, seeing, speech, walking,

dexterity, learning or developmental disability, psychological, chronic condition

4 severity groups as for the adults

RESULTS

2001 Census

2001 PALS

Disability Rates by Age Group, Census and PALS, 2001(Population in households)

Age GroupsCensus PALS

All Ages 16.0 12.40-14 5.0 3.315 + 18.6 14.615-64 13.0 9.965+ 49.6 40.5

Percentage of “YES to Census Respondents” Indicating aDisability in PALS, by Filter Question, 2001

Filter Question All Ages 0-14 15+ 15-64 65+

Do you have anydifficulty …

81.9 74.2 82.3 80.9 83.9

Limitation athome

85.2 84.2 85.3 85.1 85.5

Limitation atwork / school

76.0 73.1 76.4 75.8 82.1

Limitation inother activities

83.2 75.9 83.6 82.4 85.3

Any filterquestion

77.6 65.3 78.4 76.2 81.5

4.0 3.86.6

15.9

30.2

52.1

2.5 4.07.5

17.5

32.0

54.1

0

10

20

30

40

50

60

0-14 15-24 25-44 45-64 65-74 75+

Males

Females

Chart 1

Disability rate by age and sex, Canada, 2001¹

Percentage

Age groups

¹ The Canada total excludes the Yukon, Northwest Territories and Nunavut. The sum of the values for each category may differ from the total due to rounding.

Source: Statistics Canada, Participation and Activity Limitation Survey, 2001.

4.7

10.3

15.513.0

21.9

32.8

34.6

46.6

68.9

67.262.3

58.0

37.6

26.9

24.8

17.6

13.8

12.6

8.9

2.3

0 10 20 30 40 50 60 70 80

Unknown

Seeing

Hearing

Mobility

Dexterity

Developmental

Psychological

Speech

Learning

Chronic

Males

Females

Chart 2

Types of disabilities among children with disabilities aged 5 to 14 years, by sex, Canada, 2001¹

Percentage

¹ The Canada total excludes the Yukon, Northwest Territories and Nunavut. The sum of the values for each category may differ from the total due to rounding.

Source: Statistics Canada, Participation and Activity Limitation Survey, 2001.

NEXT STEPS

Further analysis of disability rates from filter questions in surveys

development of severity scale for filter questions

analysis of characteristics of disabled population identified in various surveys