NCPEDP Study on Disability Question in
Population Census of India 2011
Prepared for
National Centre for Promotion of Employment for Disabled People (NCPEDP)
By
Diversity & Equal Opportunity Centre (DEOC)
Supported by
Disabled People’s Organisations - Denmark (DPOD)
Acknowledgments
NCPEDP and DEOC would like to thank all the respondents for participating in this Study. Even in the busy schedule that each person has, the disability leaders felt the importance of the Study and of the Census 2011 for the disability sector and took out time to read the Questionnaire and give their preferred Option. Many made further effort to give very useful suggestions for more accurate data collection this time in Census. We are grateful to each one of them.
We hope that the Study will provide a concrete basis for further discussion and debate within the disability sector.
Table of Contents
1. INTRODUCTION......
2. OBJECTIVE OF THE STUDY......
3. METHODOLOGY......
3.1. Studying the Questions asked previously, and in some other countries......
3.2. A Survey to understand what Disability Question the disability sector thinks should be asked in the Census Questionnaire of 2011.
4. LIMITATIONS OF THE STUDY......
5. MAJOR FINDINGS......
5.1. Census Questions asked in other countries......
5.2. Impairment-based Question Vs Activity/Function Based Question
5.3 Washington Group on Disability Statistics (WG)
5.4. Disability Question chosen by the disability sector leaders for Census 2011 of India
5.5. Suggestions and Comments from respondents:......
6.Summary and Conclusions......
7.Recommendations......
ANNEXURES......
Explanatory Note of Options
Questionnaire......
Disability Question in the Census of Various Countires......
Proposed Sets for Measuring Disability: 8th WG meeting......
WHO-Disability Assessment Schedule......
List of Respondents......
1. INTRODUCTION
Disability data plays a major role in formulation of policies and allocation of resources. In India, the estimate of number of persons with disabilities varies from 2% to about 8% of the population.
The achievement of Census 2001 was the inclusion of the question on disability in order to get the disability statistics in India. However, at most places, it was reported that the enumerators did not ask the question on disability. There were also issues regarding the categories of disability mentioned in the Census questionnaire. The figure that emerged was persons with disabilities being only 2.13% of the Indian population. The challenge this time therefore is better enumeration.
As a first step, National Centre for Promotion of Employment for Disabled People (NCPEDP) has taken the initiative to understand what the representatives of the disability sector think should be the question that should be asked in Census 2011 in order to get a more accurate data.
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
The Study was divided into two major steps, the first providing background data for the second.
3.1. Studying the Questions asked previously, and in some other countries
To study the Disability Questions asked previously in the Census of some other countries, secondary data was compiled from the information available on the internet. The websites of United Nations and some individual countries that had the relevant information were sourced to compile the information.
The sample of countries was a mix of ‘developing’ and ‘developed’ countries. Disability Question asked in Census of about 11 countries was compiled for Study. In addition, the Question recommended by the Washington Group was studied. All these were tabulated for quick reference for further discussion.
3.2. A Survey to understand what Disability Question the disability sector thinks should be asked in the Census Questionnaire of 2011
-An objective-type Questionnaire, giving options on the kind of question to be asked in Census 2011 was prepared.
-The database of 100 disability leaders of India was prepared.
-The Questionnaire was sent out to the leaders of the disability sector.
-The data received was then compiled and analysed to write the report.
3.2.1. Preparation of the Questionnaire
After studying the Disability Questions asked in the Census of various countries, the Questionnaire for the Study was prepared.
Disability definition of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was taken into consideration. A disability question based purely on UNCRPD was included in the Questionnaire. Another question with some modifications based on ongoing discussions in the disability sector regarding definition and terminologies related to disability was also included in the Questionnaire.
The UN Statistics Division has formed the Washington Group on Disability Statistics, which is focused on measurement of disability in national censuses and surveys. The Question recommended by the Washington Group based on ICF and the feedback of various countries after using it was studied and a question based on it was included in the Questionnaire.
The aim of the Questionnaire was to get a trend, if not a consensus on the kind of question that can be asked in Census 2011. An attempt was made to give various options so that people could simply choose the most preferred option. The Questionnaire was made short and objective-type. While preparing the Questionnaire, a need was felt to provide an explanatory note or a support document which gave the exact question and the rationale behind each of the options given in the Questionnaire. These were prepared based on the experience of other countries and the discussions already going on in India. The respondents were requested to go through the note and then choose their most preferred option. The Explanatory Note is given in Annexure 1. The Questionnaire is given in Annexure 2.
The seven options provided varied from the Indian Census 2001 question, the ICF-based question, UK Census based question to that based on the UNCRPD. These were:
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)
Moreover, a need was felt to get qualitative data in term of suggestions and comments from the respondents and therefore that option was also provided in the Questionnaire.
3.2.2. The database of 100 disability leaders of India
The database of representatives of disability sector in India was a selective sample. An attempt was made to get a regional balance while selecting names. People with understanding of rural India, or coming from neglected regions were selected in the sample. Care was taken to ensure representation of various disability groups, including those disabilities which are considered marginalised even within the disability sector, such as, autism, learning disabilities, deaf-blindness, leprosy, thalassaemia and haemophilia. A large part of the sample consisted of persons with disabilities. Though an attempt was made to have a regional and disability balance in the sample, there is a possibility that some leaders of the disability sector may have been left out due to the limitation of the sample size.
3.2.3. The Questionnaire was sent out to the leaders of the disability sector mainly via e-mail
The Questionnaire was designed in two formats. The respondents could either submit it online or send the word document as an attachment by e-mail. Those who were sent the Questionnaire by speed post had the option of sending it back by post. The data was then entered in the online format, which generated the raw data in a spreadsheet. Rigorous follow-up through reminder phone calls and e-mails was undertaken to ensure maximum response rate.
4. LIMITATIONS OF THE STUDY
The main limitation of the Study was the time factor. The Study had to be completed in one month. Only 100 disability leaders were taken as sample and so many might have been left out. An in-depth qualitative study was not possible within the limited timeframe. However, the Consultation that would follow the Study might be fruitful.
5. MAJOR FINDINGS
5.1. Census Questions asked in other countries
The disability related questions asked in the Census of various countries were compiled and is given in Annexure 3. Some countries have asked a single question on whether the person has a disability or not. Some other countries have asked the categories or nature of disability. A few countries have asked function/activity-based disability question in their Census.
For example, South Africa in 2001 asked:
Does the person have any serious disability that prevents his/her full participation in life activities? 0 None; 1 Sight; 2 Hearing; 3 Communication; 4 Physical; 5 Intellectual; 6 Emotional.
Brazil Census 2000 included a question based on functionality and impairment:
1) Do you have any permanent mental disability limiting your daily activities? (example, working, attending school, play, etc.)? Yes/No
2-4) How do you evaluate your: See, Hear, Walk or climb stairs. Options: a. Unable, b. severe permanent problems, c. minor permanent problems, d. without problems.
5) Do you have any of the following disabilities: a. Permanent complete paralysis, b. Complete paralysis in the legs, c. Permanent paralysis in any part of the body, d. Any missing extremity: leg, arm, hand, thumb, e. None of the above.
5.2. Impairment-based Question Vs Activity/Function Based Question
The report of The World Bank[1], analysed the disability question of Census 2001 in India and the question asked in other countries. According to the report, ‘How disability questions are asked matters, and India’s methods of asking in both NSS and Census tend to generate the lowest disability estimates worldwide…many countries find a prevalence range of 1-3 percent using India’s current method of asking disability questions, while activity-based questioning yields higher rates.’ Table below illustrates this.
DISABILITY PREVALENCE RATES BY COUNTRY AND DISABILITY QUESTION METHOD, VARIOUS YEARS[2]Country and question type / Disability prevalence rate (% of population)
Do you have a disability? Yes / No
Nigeria / 0.5
Jordan / 1.2
Philippines / 1.3
Turkey / 1.4
Mauritania / 1.5
Ethiopia / 3.8
Jamaica / 6.3
List of Conditions
Colombia / 1.8
Mexico / 1.8
Palestine / 1.8
Chile / 2.2
Uganda / 3.5
Hungary / 5.7
Activity-based questions
Poland / 10.0
United Kingdom / 12.2
Brazil / 14.5
Canada / 18.5
United States / 19.4
Possible Reasons for gettinglow percentage when asked Impairment Based Question?
According to Daniel Mont,[3]
- First, the word “disability” has very negative connotations. People may feel stigma or shame at identifying themselves as disabled.
- Even if people do not feel stigma, the word “disability” often implies a very significant condition. Persons who can walk around their homes but are incapable of walking to the market may perceive their situation as not severe enough to be considered a disability.
- Disability is interpreted relative to some unspoken cultural standard of what is considered normal functioning. This may vary across various cultures, age groups, or even income groups. For example, elderly people who have significant limitations may not self-identify as having a disability because in their minds they can function about as well as they expect someone their age to function. However, at the same time they may have significant difficulties performing basic activities.
- The approach of asking about diagnosable conditions is also problematic. First of all, many people may not know their diagnosis, particularly when it comes to mental and psychosocial conditions. Knowledge about one’s diagnosis is probably correlated with variables such as education, socio-economic status, and access to health services, thus introducing a potential bias in the collected data.
- And finally, the functional effects of a particular condition can vary widely. For example, untreated diabetes can lead to profound functional limitations such as blindness or the loss of limbs. Diabetes that is properly managed can have a relatively minor impact on someone’s life.
Possible Reasons for higher percentage when one asks activities/ functions based questions?
A question such as ‘Do you have difficulty walking?’ can pick up mobility limitations resulting not only from paralysis and amputation, but also serious heart problems or other medical conditions.
In the Zambian Census (1990) a simple “Do you have a disability?” type question yielded a disability prevalence rate of only about 1 percent. However, a functional based approach using the UN Washington Group Questions (described in the next section), yielded a disability prevalence rate of over 13 percent.
5.3 Washington Group on Disability Statistics (WG)
The Washington Group on Disability Statistics was formed as a result of the United Nations International Seminar on Measurement of Disability that took place in New York in June 2001.
WG was set up to[4] :
- Foster international cooperation in the area of health and disability statistics
- Develop disability measures suitable for censuses and surveys that will provide basic information on disability
- Untangle the web of confusing and conflicting disability estimates
Use of ICF Framework by Washington Group:
The International Classification of Functioning, Disability and Health (ICF)is World Health Organisation’s (WHO) framework for measuring health and disability at both individual and population levels. The ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on 22 May 2001. The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience adecrement in health and thereby experience some degree of disability. ICF 'mainstreams' the experience of disability by viewing it, not as the mark of a social minority, but as a universal human experience. ICF conceptualises disability, not solely as a problem that resides in the individual, but as a health experience that occurs in a context. In the ICF, disability and functioning are, conceptually speaking, outcomes of interactions betweenhealthconditions(diseases, disorders and injuries) andcontextual factor.
UN Washington Group Census Questions
The WG membership agreed that a general prevalence rate that could be captured in a Census should address the "Equalization of Opportunities" purpose. The questions thus focus on 4-6 basic core activities designed to capture the great bulk of disabled adults. People identified as disabled and non-disabled according to these questions can be compared to see if differences exist in employment levels, income, education, marital status, home ownership, etc. since all those other data are already collected on most Censuses. If people identified as having disabilities, when compared to those without disabilities, experience worse outcomes, that would be evidence of the extent to which disabled people do not have the same opportunities to be included in social and economic life as non-disabled people. [5]
At the 6th Annual Meetingof the WG in Kampala, Uganda in 2006, test results were reported and the short set of questions on disability was endorsed by the 23 countries and 5 international agencies in attendance.[6]
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?[7]
2.Do you have difficulty hearing, even if using a hearing aid?[1]
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.
The Proposed Sets for measuring disability, including the Extended Set of Questions, as presented at the 8th WG meeting, Manila, Philippines, October 2008, is given in Annexure 4.
Pre-testing Activities were carried out in a few countries[8]
Standardised testing completed:
17 countries participated -13 funded via World Bank grant, 4 self-funded
Cognitive tests in 13 countries: Congo, Egypt, Gambia, India, Kenya, Lesotho, Mauritius, Philippines, Uganda, Mexico, South Africa, Tanzania, Vietnam
Field tests in 4 countries: Gambia, Vietnam, Sweden, Tanzania
Combined Cognitive/Field test in 3 countries: Argentina, Brazil, Paraguay
Case Studies: Disability in Brazil, Ecuador and Nicaragua[9]
Brazil, Ecuador, and Nicaragua collected data on disability based on a functional approach consistent with the ICF. Brazil incorporated questions on disability into their last National Census, and experienced a dramatic rise in the measured prevalence of disability as compared to their last census - 14.5% as opposed to 0.9%.Ecuador and Nicaragua implemented disability surveys (based on WHO-DAS (Disability Assessment Schedule) (Annexure 5), which recorded prevalence rates of 12.1% and 10.3%, respectively[10]
The overall rates of disability in the three countries are similar. Also, males have a slightly lower rate of disability than females. The rate of disability for people over the age of 65 is 54% in Brazil.
Vietnam, which conducted the Cognitive test and Field test for 6 Core Questions of WG, reported the following feedback[11]:
In general, 6 Core Questions are understandable to respondents. However, some questions are a bit confusing (because of translational or cultural matters):
Q4: Do you have difficulty remembering or concentrating? (The word
“concentrating” is not very clear).
Q5: Do you have difficulty with (self-care such as) washing all over or
dressing? (The children in the rich families are often taken care of, thus
they are not good at caring themselves).
Q6: Because of a physical, mental, or emotional health condition, do you
have difficulty communicating (for example understanding others or
others understanding you)? (If the questions are adapted following the language and culture of localities, it is applicable for an official survey. The manuals need to be more specific and detail instructed by examples.)