1. NCPEDP Study on Disability Question in Population Census of India 2011 Prepared by DEOC

2. OBJECTIVE OF THE STUDY To understand what kind of question the disability sector thinks should be asked in the Census Questionnaire to ensure that a more authentic disability data is collected.

3. METHODOLOGY 1.Studying the Questions asked previously, and in some other countries 11 Countries, some ‘developing’ and some ‘developed’ Question recommended by the Washington Group Mainly secondary data compiled from the internet

4. METHODOLOGY 2. A Survey to understand what Disability Question the disability sector thinks should be asked in the Census Questionnaire of 2011 - The Questionnaire and the Explanatory Note was prepared

5. METHODOLOGY The database of representatives of disability sector in India was prepared. It was a selective sample with representation of: Different regions Neglected regions Different disability groups, such as, Autism, learning disabilities, deaf-blindness, leprosy, Thalassaemia and Haemophilia. Rural and urban areas A large part of the sample consisted of persons with disabilities.

6. MAJOR FINDINGS In their Census, countries have asked either: a single question on whether the person has a disability or not; categories or nature of disability; or function/activity-based disability question.

7. Countries studied for disability question in Census Canada US England South Africa Nepal Brazil Kenya Peru Trinidad & Tobago Venezuela Philippines

8. Country & question typeDisability prevalence rate Do you have a disability? Yes / No Nigeria0.5 Philippines1.3 List of Conditions Mexico1.8 Uganda3.5 Activity-based question United Kingdom12.2 Canada18.5 DISABILITY PREVALENCE RATES BY COUNTRY AND DISABILITY QUESTION METHOD

9. Washington Group on Disability Statistics Washington Group on Disability Statistics was set up in 2001. One of the objectives of the WG was to develop disability measures suitable for censuses and surveys. WG proposed a question based on the International Classification of Functioning, Disability and Health (ICF).

10. The proposed question of WG The next questions ask about difficulties you may have doing certain activities because of a HEALTH PROBLEM. 1. Do you have difficulty seeing, even if wearing glasses? – The inclusion of assistive devices was considered for two domains only, seeing and hearing, as limitations in these domains can often be overcome with the use of glasses or hearing aids. 2.Do you have difficulty hearing, even if using a hearing aid? 3.Do you have difficulty walking or climbing steps? 4.Do you have difficulty remembering or concentrating? 5. Do you have difficulty (with self-care such as) washing all over or dressing? 6.Using your usual (customary) language, do you have difficulty communicating, (for example understanding or being understood by others)? Each question has four response categories: (1) No, no difficulty, (2) Yes, some difficulty, (3) Yes, a lot of difficulty and (4) Cannot do it at all. The severity scale is used in the response categories in order to capture the full spectrum of functioning from mild to severe.

11. Number of people the Questionnaire was sent to: 100 Responses received: 72 Percentage of responses: 72% Number of States/UTs covered: 23 Disability Question chosen by Indian Disability Sector Leaders for Census 2011 in India

12. Options and the Response Rate OPTION 1. Disability Question asked in India Census 2001 OPTION 2. Disability Question asked in the Pre-Test Questionnaire of India Census 2011 OPTION 3. Disability Question based on the categories covered under the Indian disability laws OPTION 4. Question suggested by Washington Group based on International Classification of Functioning, Disability and Health (ICF) (with certain modifications) OPTION 5. Question used in UK Census 2001 OPTION 6. Question based on UNCRPD OPTION 7. Question based on UNCRPD (with modification)

13. Question No.Respondent Count Percentage of Response Option 74663.89% Option 31013.89% Option 568.33% Option 634.17% None of above 34.17% Option 122.78% Option 222.78% Option 400.00% TOTAL72100%

14. First Preference of the Respondents If the person has impairment which in interaction with various barriers may hinder her/his full and effective participation in the society on an equal basis with others, tick on any one of the following nature of disabilities: 1. Physical impairment (e.g. impairment of movement, muscles, joints, limbs, balance, impairment of touch) 2. Psychological and psycho-social impairment (e.g. impairment of behaviour, attention, concentration, thoughts, mood, interaction with others) 3. Learning impairment (e.g. intellectual impairment, specific learning impairment and impairment of applying knowledge) 4. Hearing impairment 5. Visual impairment 6. Speech impairment 7. Multiple impairments 8. Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation)

15. Some Suggestions from Respondents for Further Discussion The wordings of the covering line (for example to include ‘barriers’ or not) Inclusion of a separate category of deafblindness The change in terminology from ‘hearing impairment’ to ‘deaf and hard of hearing’ The definition of each category, what impairments to be included and how the enumerators should ask that question The strategy and content for enumerators’ training The strategy for awareness raising

16. Thank You