Measuring disability in South Africa: Data gaps & challenges Population Statistics Division Statistics South Africa 7 December 2016

Presentation outline Background Defining & measuring disability Data sources in South Africa Indicators Questions & comments

Background Disability measurement content, methodologies and indicators need to be clearly defined, data sources identified and clear targets set Inadequate disability statistics continue to hinder efforts made at all levels of planning in allocating resources aimed at improving the lives of persons with disabilities Output data on disability statistics need some further validation prior to input into health metrics models such as the Sullivan Method of measuring health life expectancy

Defining & measuring disability Harmonization of definitions and concepts across sectors critical Use of WG questions in Censuses and surveys provide improved approach of measuring disability Focus on the level of difficulty experienced in the six domains – Seeing, communicating, hearing, walking, remembering and concentrating, and self-care.

Data sources on disability indicators Frequency Type of questions on disability General Household Survey Annual Washington Group (WG) Assistive device usage Large Sample Community Survey 10-year cycle Censuses Decennial (ten years) Administrative data from collective living quarters Proposed to be annual

Questions in Census 1996 & 2001 Census 1996: Does (the person) have a serious sight, hearing, physical or mental disability? 1 = Yes 2 = No If Yes, Circle all applicable disabilities 1 = Sight (serious eye defects) 2 = Hearing/speech 3 = Physical disability (paralysis) 4 = Mental disability Census 2001: Does (the person) have any serious disability that prevents his/her full [participation in life activities) such as education, work, social life?) Mark any that apply. 0 = None 1 = Sight (blind/sever visual limitations) 2 = Hearing (deaf, hard of hearing) 3 = Communication (speech impairment) 4 = Physical (e.g. Need a wheelchair, crutches) 5 = Intellectual (various learning difficulties) 6 = Emotional (behavioral, psychological)

Questions in GHS 2009 – 2015 & Census 2011

Community Survey 2016

Coverage Censuses Surveys Census covers all household in SA - data available at very low levels of disaggregation Exclusions : institutions, transients, homeless, children below the age of five Surveys Disability a rare event affected by sample size Makes analysis using more than 2 dimensions (such as age, sex, race, province) rather unreliable

Census 2011 disability statistics

Out of calculation Seeing Hearing Communicating Within universe for calculation of disability index Seeing Hearing Communicating Walking or climbing stairs Remembering /Concentrating Self Care No difficulty 39 064 787 42 257 767 43 014 898 42 318 455 41 866 559 41 204 257 Some difficulty 4 085 898 1 251 907 473 450 1 100 135 1 405 098 837 363 A lot of difficulty 660 874 229 918 115 699 317 216 365 015 266 765 Cannot do at all 77 205 58 451 75 583 105 964 91 163 322 104 Total 43 888 764 43 798 043 43 679 630 43 841 770 43 727 835 42 630 489 Out of calculation Do not know 23 372 20 791 21 864 16 340 35 694 63 164 Cannot yet be determined 52 47 12 248 5 799 29 259 926 246 Unspecified/missing 1 381 118 1 474 426 1 579 564 1 429 399 1 500 518 1 673 408 1 404 542 1 495 264 1 613 676 1 451 538 1 565 471 2 662 818

The disability index used in this report is based on multiple basic action difficulties in seeing, hearing, communicating, walking, remembering/concentrating, and self-care EXCLUSIONS FROM ANALYSIS Population that was enumerated in institutions such as prisons and hospitals (750 060) Transients and the homeless (59 057) Data for children below the age of five excluded due to reporting errors (5 668 137 ) The disability index is calculated based on population that responded on the various disability types Unspecified/missing cases, “do not know” and “cannot yet be determined” were excluded

Community Survey 2016

Gaps and limitations Misreporting and bias No data on child disabilities (ages 0-4 years) Frailty in old age exaggerating disability at ages 60+ Under reporting due to cultural beliefs Subjectivity of the WG questions. Responses based on self-assessment rather than scientific methods of testing for presence or absence of the condition

Gaps and limitations Not all assistive devices are covered Coverage & high non-response Sample Size for annual General Household Survey about 30 000 households - limited to disaggregation of data at provincial level & hence no small area statistics Census 2011 (disability questions only asked of hh based population) Some disability types not measured at all Not all assistive devices are covered

Initiatives in narrowing data gaps The Washington group together with UNICEF have collaborated to produce a more effective module in measurement of disabilities among children (2-17 years old) Stats SA together with DSD and UNDP conducted a research study to test childhood disability module in South Africa

Census 2011 and CS 2016 compared: Six domains

INDICATORS Disability prevalence by province: Census 2011 and Community Survey 2016

INDICATORS Disability prevalence by age: Census 2011 and Community Survey 2016

INDICATORS Disability prevalence by age: Census 2011 versus Community Survey 2016

Disability prevalence by population group: Census 2011 and Community Survey 2016

Assistive devices

Education and income: Census 2011

Education and income

Use of Census 2011 disability input data into health metrics models (Sullivan Method) Age Male Female Life Expectancy Disability Free Life Expectancy 50 21.3 17.0 26.5 19.4 51 20.7 16.5 25.8 18.8 52 20.1 15.9 25.1 18.1 53 19.6 15.4 24.4 17.5 54 19.1 14.8 23.7 16.9 55 18.5 14.3 23.1 16.3 56 18.0 13.8 22.4 15.7 57 13.3 21.7 15.1 58 12.8 21.1 14.5 59 16.4 12.3 20.4 13.9 60 11.8 19.7 61 11.3 12.7 62 14.9 10.9 12.2 63 10.4 17.9 11.6 64 14.0 10.0 17.3 11.1 65 13.5 9.5 16.6 10.5 66 13.1 9.1 16.0 67 12.6 8.7 68 8.3 9.0 69 7.9 8.5 70 11.4 7.5 13.7 8.0 71 7.2 7.6 72 10.6 6.8 73 10.3 6.5 74 9.9 6.2 11.7 6.4 75 9.6 5.9 6.0

Recommendations on addressing data gaps challenges Stats SA together with relevant stakeholders will continue advocating for a specialised survey to measure disability given the challenges on data gaps Use administrative sources of data to collect and report information on disability very critical

Thank you!