NCPEDP STUDY ON DISABILITY QUESTION INPOPULATION 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)

ACKNOWLEDGMENTSNCPEDP 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.

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TABLE OF CONTENTS

1. INTRODUCTION.................................................................................................5

2. OBJECTIVE OF THE STUDY.............................................................................5

3. METHODOLOGY.................................................................................................53.1. Studying the Questions asked previously, and in some other countries.........53.2. A Survey to understand what Disability Question the disability sector thinks should be asked in the Census Questionnaire of 2011...........................................5

4. LIMITATIONS OF THE STUDY.........................................................................7

5. MAJOR FINDINGS..............................................................................................85.1. Census Questions asked in other countries.....................................................85.2. Impairment-based Question Vs Activity/Function Based Question...............85.3 Washington Group on Disability Statistics (WG)..........................................105.4. Disability Question chosen by the disability sector leaders for Census 2011 of India.................................................................................................................145.5. Suggestions and Comments from respondents:............................................16

6. Summary and Conclusions................................................................................20

7. Recommendations.............................................................................................20

ANNEXURES.........................................................................................................21Explanatory Note of Options...............................................................................21Questionnaire.......................................................................................................24Disability Question in the Census of Various Countires.....................................25Proposed Sets for Measuring Disability: 8th WG meeting...................................28WHO-Disability Assessment Schedule...............................................................35List of Respondents..............................................................................................36

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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.

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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 2001OPTION 2. Disability Question asked in the Pre-Test Questionnaire of India

Census 2011OPTION 3. Disability Question based on the categories covered under the

Indian disability lawsOPTION 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 2001OPTION 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

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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.

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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 Bank1, 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 YEARS2

Country and question type Disability prevalence rate (% of population)

Do you have a disability? Yes / NoNigeria 0.5Jordan 1.2Philippines 1.3

1 People with Disabilities in India: From Commitments to Outcomes, The World Bank, July 2009.2 People with Disabilities in India: From Commitments to Outcomes, The World Bank, July 2009.

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Turkey 1.4Mauritania 1.5Ethiopia 3.8Jamaica 6.3

List of ConditionsColombia 1.8Mexico 1.8Palestine 1.8Chile 2.2Uganda 3.5Hungary 5.7

Activity-based questionsPoland 10.0United Kingdom 12.2Brazil 14.5Canada 18.5United States 19.4

Possible Reasons for getting low 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.

3 Measuring Disability Prevalence – Daniel Mont, March 2007 http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf

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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 to4 :

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 a decrement 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 between health conditions (diseases, disorders and injuries) and contextual 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 Meeting of 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

4 Measuring Disability in a Survey or Census Context: Parallel Work Advancing the Field; Barbara M. Altman5 Measuring Disability Prevalence – Daniel Mont, March 2007 http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf

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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 countries8

Standardised testing completed:17 countries participated -13 funded via World Bank grant, 4 self-fundedCognitive tests in 13 countries: Congo, Egypt, Gambia, India, Kenya, Lesotho, Mauritius, Philippines, Uganda, Mexico, South Africa, Tanzania, VietnamField tests in 4 countries: Gambia, Vietnam, Sweden, TanzaniaCombined Cognitive/Field test in 3 countries: Argentina, Brazil, Paraguay

Case Studies: Disability in Brazil, Ecuador and Nicaragua9

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%, respectively10

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 feedback11:

6 Development of an Internationally Comparable Disability Measure for Censuses; Washington Group on Disability Statistics (WG); 5th May 2008)

7 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. 1

8 Measuring Disability in a Survey or Census Context: Parallel Work Advancing the Field, Barbara M. Altman9 Measuring Disability Prevalence, Daniel Mont, March 2007, http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf 10 Flores, et. al. 2005, INEC, 200311 ICF Based approach for disability data collection in Vietnam, PPT by Nguyen Dinh Chung, General statistics Office, Vietnam, 9th April 2008

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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, thusthey are not good at caring themselves).

Q6: Because of a physical, mental, or emotional health condition, do youhave difficulty communicating (for example understanding others orothers 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.)

When the ICF approach is followed, prevalence of disability is much higher (15.3%). However, if cut off point “a lot of difficulty” is applied, the prevalence 3.7% seems to be familiar to existing figures. Therefore policy makers more easily accept it, but a huge number of people with disabilities will be missing from the programmes of support.

For the cut off point “a lot of difficulty”, disability rate of the poor is higher than the rich’s. But it is opposite trend if cut off point “some difficulty” is applied. The reasons seem unclear.

Challenges of asking the WG Census Question- One set of measures will not satisfy the multiple needs for disability data- Excluded populations: Very young children; Institutionalized population;

Homeless; Floating populations.- The choice of which activities to use for identifying people as having a

disability is complicated if the desire is to have a measure that is internationally comparable. Even seemingly basic activities can create problems in making international comparisons. For example, “dressing oneself” can take on very different connotations in a society where one ordinarily slips into pants and a loose fitting shirt, compared to dressing in something as complicated as a sari. The ability to tie shoelaces or button shirts – often used as metrics for assessing hand functioning – are more or less relevant depending not only on culture but economic status. Even “bathing oneself” is very different for someone who can turn on a spigot as opposed to needing to travel to a community water source. This is not to say, of course, that such questions should not be asked. But care should be taken in making international comparisons and in writing questions to make responses from different countries as comparable as possible. 12

WG – India Reports

Two Reports were found vis-à-vis activities related to Disability Statistics in India:(1) Presentation at the Fifth Annual Meeting of Washington Group, 21-23 September 2005 and (2) a Questionnaire, ‘Annual Report on National Activities Related to Disability Statistics’ filled by J.Dash for India, which was presented at the Eight Annual Meeting of Washington Group, 29 -31 October 2008, Manila.

The presentation at Fifth Meeting of WG (2005) shared about UNESCAP-WHO Field Testing Survey conducted in one District based on ICF Model:

- There were 68 questions in the schedule, it was considered to be lengthy. The respondents were not usually willing to give adequate time for completing the schedule.

12 Measuring Disability Prevalence – Daniel Mont, March 2007 http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf)

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- There was a problem on the question regarding the sexual activities specifically when asked by a male interviewer to a female respondent & vice-versa.

- There was a problem in asking this question to the unmarried, widows/widowers and separated persons.

- In the rural areas, the female respondents tend to suggest to get the information from their husbands.

- Most of the respondents were curious to know why they were being interviewed.

- Majority of the respondents reacted, “I am quite healthy. Why are you asking unnecessary questions?”

- Literate respondents were cooperative during the interview - It was difficult to interview the illiterate & semi-literate persons, most of

time was spent to make them understand the questions.- Female respondents were reluctant to respond, they were insisting the

presence of male members.- Retired persons were found to be very cooperative during the interview.- Persons who were not healthy (having some kind of health problems) took

interest in responding to the questions

The Questionnaire that was submitted by India in the Eighth Meeting of WG (2008), stated that the WG questions “has been under active consideration of the census and surveys organisations. Pre-testing etc. needs to be done before they are adopted”. It further said, “Process has been initiated for conducting a Pilot Survey for collection of Disability Statistics by the Government of India. The schedules and instructions for canvassing them have been drafted in the ICF framework. The field testing survey has not been done yet”.

Relevant Websites to know more about WGUnited Nations Statistics Division: http://unstats.un.org/unsd/methods/citygroup/washington.htmNational Center for Health Statistics; Washington Group on Disability statistics http://www.cdc.gov/nchs/citygroup/citygroup_questions.htm

5.4. Disability Question chosen by the disability sector leaders for Census 2011 of India

5.4.1. Response Rate of the Questionnaire

Number of people the Questionnaire was sent to: 100Responses received: 72Percentage of responses received: 72%The list of respondents is given in Annexure 6.

5.4.2. States and Union Territories from where responses were received: Andhra PradeshAssamBiharChandigarhGoa GujaratHimachal PradeshJammu & KashmirJharkhand

KarnatakaMaharashtraManipurMeghalaya MizoramNagalandNew DelhiOrissaPuducherry

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PunjabTamil NaduUttar Pradesh

UttarakhandWest Bengal

5.4.3. The Questions and their preference rate chosen by the respondents

Question No. Respondent Count Percent of Responses

Option 7 46 63.89 %Option 3 10 13.89 %Option 5 6 8.33 %Option 6 3 4.17 %None of the above 3 4.17 %Option 1 2 2.78 %Option 2 2 2.78 %Option 4 0 0.00%GRAND TOTAL 72 100%

1ST PREFERENCE OF THE RESPONDENTS

OPTION 7. Question based on UNCRPD (with modification)

QuestionIf 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 impairment5. Visual impairment6. Speech impairment7. Multiple impairments8. Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation)

2ND PREFERENCE OF THE RESPONDENTS

OPTION 3. Disability question based on the categories covered under the Indian disability laws

QuestionIf the person has any disability, which hinders her/his full and effective participation in society on an equal basis with others, give appropriate code number:

1. Blindness and Low vision 2 Leprosy-cured; 3. Hearing impairment; 4. Locomotor disability; 5. Mental retardation; 6. Mental illness;

7. Autism;

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8. Cerebral Palsy; 9. Multiple Disabilities.

Respondents have opted for impairment-based question (Option No. 7) rather than functional question (Option No. 4). The second most preferred Option (No. 3) is purely based on medical model, which mentions specific diagnosis like Autism, Leprosy, etc.

It is interesting to note that the Government of India has been part of the Washington Group discussions and still, the Pre-test Question for Census 2011 did not have any component of the ICF model. Also, there seems to have been no consultation with people with disabilities in India in the entire process. Moreover, the disability sector has not chosen the ICF-based question despite the ongoing international discussions on the same. It may also be possible that some leaders of the disability sector may not be aware of the ongoing discussions of WG.

The reason for respondents not choosing the ICF-based question could be due to prevailing mindset towards the medical model of disability or could be more practical issues related to Indian culture. For example, asking questions about self-care etc. especially to women respondents and the fact that Census questions are generally answered by one person for all members of the family.

Most organisations work on specific impairments and therefore are interested in knowing the number of people in that particular impairment group. Hence, they may have chosen the option of impairment-wise data collection.

One respondent suggested that most of the areas should be the same as in Census 2001 but instead of saying the person is physically disabled in seeing, the language used can be ‘Do you have difficulty in seeing even if wearing glasses?’ The questions suggested will address the five areas covered in the previous Census and expand the area of intellectual impairment to include remembering and concentrating.

UNCRPD has listed the impairments and probably that is also why the sector has chosen an impairment-based question. For example, one respondent has suggested that the sooner we push for UNCRPD definition, the better it is.

One of the respondents explained the reason for choosing the impairment model, without the mention of barriers. “I don’t think the purpose of the census is to understand the social barriers faced, the functional problems etc. For that we have to conduct separate research studies and surveys.” Another respondent mentioned that “Medical model is the basis of defining disability in all the existing laws of our country. One can wish it away but it is the reality and way things are moving it is going to be there for some more time (it is not likely to change before the census).” Moreover, one respondent felt that the Government of India designs programmes according to the disabilities mentioned in the Acts and therefore, we should get the data according to the Acts. In addition, the medical model “can be easily understood by the grassroots people who go for data collection and the general public who answer these questions.”

5.5. Suggestions and comments from respondents

Out of the 46 respondents who chose Option 7, 25 respondents (54.3%) chose it as it is, without giving any comment or suggestion about the question. Though there was a clear preference for Option 7, some issues were raised by the respondents, which are given below. The ones within quotes are suggestions as given by the respondents:

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5.5.1. Inclusion of extent of disability in the Census question

Majority of the respondents selected Option 7, which does not have extent of disability. A negligible number of respondents wanted the extent or percentage of disability to be asked.

5.5.2. Inclusion of long-term illness and medical/health conditions

As majority of respondents chose Option 7 without any further suggestion, it seems that the disability sector wants long-term illness and medical/health conditions to be included. However, it needs to be explained well so that there is clarity regarding which illnesses/health conditions would be considered as disability and which would not. There were a few respondents who felt health conditions should be excluded. A few others felt that it is difficult to define. Some of the comments in this regard are given below:

- “ Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation) is explained as (Including epilepsy, Thalasemia requiring life-long blood transfusion, Haemophilia, AIDS, leprosy, cancer, Parkinson’s, Alzheimer’s, Dementia, deteriorating/degenerating condition, etc. and difficulties due to old age.)”

- “Option 7’s introduction can begin with “Any dysfunction of body organ leading to long term illness or functional limitation” rather in the last category - Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation) as this category seems to address a health condition rather than a physical impairment.”

- “Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation) is not easy to define. Many long-term health conditions can be disabling. In our country, many people especially those who are poor have serious health concerns due to lack of access to preventive and curative health care.”

5.5.3. Inclusion of old age disabilities

The Enumerator’s Manual mentions that disability due to old age should not be included. It states that “persons who show signs of mental fatigue, lack of understanding and are dependent on others for daily routine on account of being old will not be considered mentally disabled.” However, the respondents do want old age disabilities to be included.

5.5.4. Mental illness and intellectual impairment Majority of the respondents want separate categories for the two, mental illness and intellectual impairment, as per the choice made by them. One respondent commented that “this would help to have more objective reporting of the actual situation, just as we distinguished sensory impairment into hearing and visual.”

5.5.5. Categories of impairment

There were some suggestions regarding addition of certain categories of disabilities. These are given below. However, it needs to be kept in mind that

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only 9 categories can be included, as per the Census Commissioner’s Office.

- There were recommendations for the addition of an option “Other” at the end of the options which will take into account any disability which has been left out. There was a suggestion for modification in Option 1 to include a 6th category of any other long-term disability associated with functional limitation (Enumerator to include Autism, ADHD, Dyslexia, Multiple disabilities, longstanding mental illness, residual disabilities from disabling health conditions such as leprosy).

- There was also a suggestion that one should have the choice to tick

wherever applicable, instead of having a separate category for ‘multiple disability’.

- The deaf and deafblind community have strongly recommended that deafblindness should be a separate category. “A category for “deafblindness” should be included as it is not appropriately covered under Multiple Disabilities/Impairment. Considering there is a large population of people with Deafblindness in India, if mentioned separately in the categories of disability, the Census would give the correct picture of the extent of deafblindness in India, which will help get the recognition it deserves.

- A change in terminology is suggested as “deaf and hard of hearing” rather than “hearing impairment”. An e-mail from World Federation of the Deaf recommended the Option 7 with the following additions:

4. Deaf (using sign language) and Hard of hearing5. Deafblind

OR:4. Deaf (using sign language)5. Deaf (not using sign language)6. Hard of hearing7. Deafblind

- Autism is specifically mentioned in Option 3 which has been chosen by only 10 respondents. Therefore, majority have not chosen it as a separate category. Some respondents felt that identifying Autism was a challenge. One comment was, “if you ask a slum person, what kind of mental disability does person x have, they will respond along the lines of, "I don't know, but there is something not right about him" or "he is slow" etc etc. They wouldn't be able to say Autism.”

- Option 7 has one option of learning impairment and that is what majority have chosen. It clubs intellectual and learning disabilities. One respondent had a query about learning disabilities. “Will the different categories under "learning impairment" will be given as options? If not then there will be no way of knowing whether the individual concerned is intellectually impaired or has learning disabilities (with at least average intelligence). This may be a cause of concern as the rate of prevalence will shoot up significantly and there will not be any information on any ONE disability.”

- “It should be speech and language impairment rather than only speech to cover cases of aphasia and other receptive language disorders.”

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5.5.6 Sequence of categories of disabilities

- A suggestion came that “In Option 7, the position of choice number 7 and 8 should be 1 and 2. Reason: Once the enumerator has checked visual impairment in the form and later he realises it is multiple impairment, it may reduce accuracy. If it is other way round the chances of accuracy will be more.”

5.5.7. Suggestions on changes in language

The language needs to be very simple, easy to translate to Hindi and other vernacular languages, and easy to understand by people at the grassroots. Many respondents have felt that though Option 7 is exhaustive, it may be difficult to elicit answers from people. Enumerators may not ask the question if it is too complicated. Some terms like ‘barriers’ and ‘participation’ may be confusing. Some of the comments are given below:

- One respondent felt that “if the impairment does not hinder full participation, then will it not be considered as disability?” Another respondent felt “the defining sentence `interaction with various barriers may hinder full & effective participation’ – may be confusing e.g. a person with a disability leading an active and participatory life, then may not get counted as disabled person.”

- "Interaction with various barriers needs to be elaborated further for the enumerators to understand this concept and explain in simple terms while administering the same...” “Instead of term “Barriers” saying current material and social conditions sounds logical.”

- “We will have to explain the word impairment as ‘a loss of structure or function’. And disability as ‘inability to participate effectively in life’, life would have to be further explained as life domains like development, education, play, leisure, work and employment, community etc.”

- One respondent suggested that the beginning line can be “If the person has impairment, which in current material and social conditions may hinder her/his full and effective participation in the society on an equal basis with others and renders human or augmented mechanical assistance for doing various tasks effectively and in a sufficiently risk-free manner, tick on any one of the following nature of disabilities, indicating whether it is severe or mild:”

- “One of the terms “long term/not temporary/not short term” is required to be introduced in the beginning part of the question. Consequently, in Option 7 No. 8 will have to be dropped.”

- One respondent gave a suggestion for making it simple. “The question of Option 1 and the nature of disabilities of Option 7 as a combination seems more appropriate than any of the mentioned options.”

5.5.8. Position of the disability question

- “In Census 2001, the question related to disability was numbered at 15 in the questionnaire. This time the Census Commissioner should change the position of the question and bring it to single digit in sequence, by which a possibility of omission of this question could be reduced.”

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5.5.9.Enumerators’ training

Many respondents expressed concern about enumerators’ initiative, motivation to ask the disability question and the importance of their training. There was also concern about how these terminologies will be translated into 16 languages for the common man to understand.

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6. SUMMARY AND CONCLUSIONS

The Objective of the NCPEDP Study was 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.

A Questionnaire was sent to 100 disability leaders in India for them to select their most preferred disability question for Census 2011. The first preference of 63.89 percent of respondents was Option 7, which reads as follows:

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 impairment5. Visual impairment6. Speech impairment7. Multiple impairments8. Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation).

7. RECOMMENDATIONS

Though the disability leaders have given a clear mandate for Option 7, there seems to be a need for a consultation to discuss:

- the wordings of the covering line (for example to include ‘barriers’ or not) and to make it simple;

- inclusion of a separate category of deafblindness; - the change of terminology from ‘hearing impairment’ to ‘deaf and hard of

hearing’;- the definition of each category and decide what impairments will be

included in each category and how the enumerators should ask that question;

- the strategy and content for enumerators’ training; and- the strategy for awareness raising.

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ANNEXURES

ANNEXURE 1

National Centre for Promotion of Employment for Disabled People (NCPEDP)A-77, South Extension Part II, New Delhi 110 049, India. 

Tel.: +91-11-26265647/48; Fax: +91-11-26265649; E-mail: secretariat@ncpedp.org

NCPEDP Study on Disability Question in Population Census of India 2011

Explanatory Note of Options

Given below are seven Options for the Question that could be considered for including in Census 2011. Please read them carefully and choose the Option that you prefer the most and indicate your Option in the Questionnaire attached.

OPTION 1. Disability question asked in India Census 2001

QuestionIf the person is physically/mentally disabled, give appropriate code number: 1. In Seeing, 2. In Speech, 3. In Hearing, 4. In Movement, 5. Mental.

Rationale/ConcernsIf the same question is asked, the data will be comparable, though the numbers that emerged were not accurate. Moreover, it covers only five broad categories of disabilities.

OPTION 2. Disability question asked in the Pre-Test Questionnaire of India Census 2011

Question:Disability: (a) Type of disability: 1. Mental, 2. Seeing, 3. Hearing, 4. Speech, 5. Movement; (b) Extent of disability: 1. Totally disabled , 2. Partially disabled.

Rationale/ConcernsIt has the same categories as Census 2001. The extent of disability has been added. The term “totally disabled” may not be taken well despite the explanation given in the manual. The manual also mentions that filling up of extent of disability will largely depend of the efforts of the enumerator.

OPTION 3. Disability question based on the categories covered under the Indian disability laws

QuestionIf the person has any disability, which hinders her/his full and effective participation in society on an equal basis with others, give appropriate code number:

1. Blindness and Low vision

2 Leprosy-cured; 3. Hearing impairment; 4. Locomotor disability;

5. Mental retardation; 6. Mental illness;

7. Autism; 8. Cerebral Palsy; 9. Multiple Disabilities.

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Rationale/ConcernsThis question is based on Indian disability laws and covers many more disabilities than 2001 Census. However, it is based on the medical model and may not cover all disabilities.

OPTION 4. Question suggested by International Classification of Functioning, Disability and Health ( ICF) (with certain modifications)

QuestionBecause of a physical, mental or emotional health condition… 1 Do you have difficulty seeing even if wearing glasses?; 2 Do you have difficulty hearing even if using hearing aid/s?; 3 Do you have difficulty walking or climbing stairs or using your hands or movement?; 4 Do you have difficulty remembering, concentrating, learning or comprehending?; 5 Do you have difficulty (with self-care such as) brushing, washing, bathing, getting ready?; 6 Because of a physical, mental, behavioral or emotional health condition, do you have difficulty communicating (for example, understanding or being understood by others)? Question response options are Yes or No.

Rationale/ConcernsThough the question is based on functionality and is internationally recommended, countries had reported difficulties in eliciting answers of some questions. In the original question, the word ‘concentration’ is used, which was not very clear. Independence in self care varies with age and cultural practices. Moreover, enumerators and the person answering about self care, will both find it uncomfortable to address this question. Plus, self-care and communicating will not be relevant for young children and would need to be explained to the enumerators. The ICF question originally included extent of disability. However, asking about the extent of disability may complicate the analysis. For example, according to the experience of Vietnam, when you take the number of people under “some difficulty”, the number is so high, that the policy makers are not convinced to use the data. And if the cut off point “a lot of difficulty” is applied, the prevalence comes much lower and the policy makers are ready to accept it, however, a large number of persons with disabilities get left out from the programmes of support. Moreover, how do you tabulate where a person has said ‘Yes’ for more than one question.

OPTION 5. Question used in UK Census 2001

QuestionDo you have any long-term illness, health problem or disability, which limits your daily activities or the work you can do? Question response options are Yes or No

(Include difficulties in seeing, hearing, speaking, communicating, moving, coordination of movement, memory, thinking, emotional disturbances, psychological disturbances, etc., which may be due paralysis, epilepsy, Thalasemia, Haemophilia, HIV-AIDS, intellectual impairment, spinal problems, learning disability, Autism, Cerebral Palsy, leprosy, cancer, dysfunction of a body organ leading to long-term functional limitation, joint pains, amputation of limb or part of limb, Parkinson’s, Alzheimer’s, Dementia, deteriorating/degenerating condition, etc. Include such difficulties due to old age.)

Rationale/ConcernsThe UK Census has one question and does not include categories of disabilities or the extent of disability. However, more detailed questionnaires are used in other surveys of the country. The disabilities mentioned in the bracket have been added

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here to give the enumerators an idea. The Census question includes long-term illness and medical condition. It also includes difficulties due to old age.

OPTION 6. Question based on UNCRPD

QuestionIf the person has a long-term 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 impairment2. Mental impairment

3. Intellectual impairment4. Sensory impairment

Rationale/ConcernsUNCRPD uses the term ‘long-term’ impairment, which may be difficult to define. Sensory impairment combines hearing and visual impairments.

OPTION 7. Question based on UNCRPD (with modification)

QuestionIf 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 impairment5. Visual impairment6. Speech impairment7. Multiple impairments8. Long-term disabling health condition (dysfunction of body organ/s leading to long-term functional limitation)

Rationale/ConcernsThe categories of impairment have been further explained here for the purpose of enumeration, though these are not in the UNCRPD definition. Sensory impairment has been subdivided into hearing and visual impairment for the purpose of Census enumeration. Mental and Intellectual impairment has been reworded as psychological/psycho-social and learning impairment respectively. Long- term health condition which is disabling plus multiple impairments have been added as separate categories here.

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ANNEXURE 2

National Centre for Promotion of Employment for Disabled People (NCPEDP)A-77, South Extension Part II, New Delhi 110 049, India 

Tel.: +91-11-26265647/48; Fax: +91-11-26265649; E-mail: secretariat@ncpedp.org

NCPEDP Study on Disability Question in Population Census of India 2011

Questionnaire

Name:

Organisation if any:

Address:

State:

Phone: Fax:

E-mail:

Website:

I have read the reference document ‘Explanatory Note of Options’. My most preferred choice of the Disability Question that should be asked in Population Census 2011 is:

Option Number _____________ (Choose from Options 1 to 7).

If you do not agree with any of the seven options then, please suggest a Question for Census Enumeration. You can also give any comments here.

Date:

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ANNEXURE 3

Disability Question in the Census of Various Countires

Canada 2006 ACTIVITIES OF DAILY LIVING 7.Does this person have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities? Yes, sometimes Yes, often 8. Does a physical condition or mental condition or health problem reduce the amount or the kind of activity this person can do:(a) at home? Yes, sometimes Yes, often No(b) at work or at school? Yes, sometimes Yes, often No Not applicable (c) in other activities, for example, transportation or leisure? Yes, sometimes Yes, often No

http://www12.statcan.gc.ca/census-recensement/2006/ref/about-apropos/version-eng.cfm

US 2000 16. Does this person have any of the following long-lasting conditions: * a. Blindness, Deafness, or severe vision or hearing impairments? * b. A condition that substantially limits one or more basic physical activities such as walking, climbing stairs, reaching, lifting, or carrying?17. Because of a physical, mental or emotional condition lasting 6 months or more, does this person have any difficulty in doing any of the following activities: * a. Learning, remembering, or concentrating? * b. dressing, bathing, or getting around inside the home? * c. (ANSWER IF THIS PERSON IS 16 YEARS OLD OR OVER) Going outside the home alone to shop or visit a doctor's office? * d. (ANSWER IF THIS PERSON IS 16 YEARS OLD OR OVER) Working at a job or business?

http://www.census.gov/hhes/www/disability/decennial.html

England 2001 12) Do you look after, or give any help or support to family members, friends, neighbours or others because of: - long-term physical or mental ill health or disability, or - problems related to old age? (Do not count anything you do as part of your paid employment. Tick time spent in a typical week. - No, - Yes, 1 to 19 hours a week, - Yes, 20 to 49 hours a week, - Yes, 50+ hours a week. 13) Do you have any long-term illness, health problem or disability which limits your daily activities or the work you can do?

http://www.statistics.gov.uk/census2001/census_form.asp

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(Include problems which are due to old age) - Yes, - No.

South Africa

2001 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.

http://www.statssa.gov.za/census01/html/C2001disability.asp

Nepal 2001 What is ….type of Disability? 1. Physical disable, 2. Blind, 3. Deaf, 4. Mentally retarded, 5. Multiple Disability, 6. Not disable

http://www.cbs.gov.np/Population/National%20Report%202001/LAGAT-1.htm

Brazil 2000 1) Do you have any permanent mental disability limiting your daily activities? (e.g. working, attending school, play, etc.).

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.

http://www.iadb.org/sds/doc/soc-DisabilitySourcesPrevalenceLAC-e.htm

Kenya 2009 P37- What type of disability does (name) have? (List not more than three) 1. Visual, 2. Hearing, 3. Speech, 4. Physical, 5. Mental, 6. Self Care, 7. Others, 8. None. Because of the disability, does (name) have difficulties in engaging in any economic activity? 1. Yes, 2. No, 3. NA, 9. DK.

http://www.scribd.com/doc/19106004/GoK-Census-Questionnaire-2009

Peru 2005 Do you have any long-term difficulty or limitation to:1) See, even when wearing lenses or glasses, 2) Hear, even when using hearing aids, 3) Speak, 4) Use arms or hands, 5) Use legs or feet/Walk or climb stairs, 6) Understand or learn/Concentrate and remember, 7) Communicate, understand others, and others understanding you, 8) Other difficulty or limitation? Yes/No to each question.

http://www.iadb.org/sds/doc/soc-DisabilitySourcesPrevalenceLAC-e.htm

Trinidad & Tobago

2000 1) Does ……. suffer from any long-standing disability that prevents him/her from performing an activity? Yes / No / Not Stated.

http://www.iadb.org/sds/doc/soc-DisabilitySources

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2) Does ... have difficulties in: seeing (even with glasses), hearing (even with hearing aid), speaking (talking), moving/mobility (walking, standing, climbing stairs), body movements (reaching, kneeling), gripping, learning, behavioral, other? Yes/No.

PrevalenceLAC-e.htm

Venezuela 2001 1) Do you have any of the following deficiencies, problems or disabilities: Completely blind, completely deaf, mental retardation, loss or disability of upper or lower extremities, other, and none? Presented in a checklist. 2) Do you require the use of a wheel chair? Yes/No.

http://www.iadb.org/sds/doc/soc-DisabilitySourcesPrevalenceLAC-e.htm

Philippines 2000 For each person :"Does ______ have any physical or mental disability"?If the answer is yes,"What type of disability does ____ have? Categories of Disability: Total Blindness, Partial Blindness, Low Vision, Total Deafness, Partial Deafness, Hard of Hearing, Oral Defect, One Hand, No Hands, One Leg, No Legs, Quadriplegic – Regular, Quadriplegic – Severe, Retarded – Regular, Retarded – Severe, Mentally Ill, Multiple Impairment – Regular, Multiple Impairment – Severe

http://www.worldenable.net/escapstats/presentationphilippines.htm

India 2001 Q. 15: If the person is physically/mentally disabled, give appropriate code number 1. In Seeing, 2. In Speech, 3. In Hearing, 4. In Movement, 5. Mental.

http://www.censusindia.gov.in/Census_Data_2001/Questionaire-2001/CodeList_Household_Schedule.htm#disability

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ANNEXURE 4

Proposed Sets for Measuring Disability: 8th WG meetingManila, Philippines,29 – 30 October 2008(Version 1: 17 October, 2008)

THE SHORT SETREVISED Census Questions on Disability Endorsed by the Washington Group

Introductory phrase: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?1. No – no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

2. Do you have difficulty hearing, even if using a hearing aid?1. No- no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

3. Do you have difficulty walking or climbing steps?1. No- no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

4. Do you have difficulty remembering or concentrating?1. No- no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

5. Do you have difficulty (with self-care such as) washing all over or dressing?1. No – no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood?

1. No – no difficulty2. Yes – some difficulty3. Yes – a lot of difficulty4. Cannot do at all

2. THE EXPANDED SHORT SET

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1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

1. Do you have difficulty seeing, even if wearing glasses?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 (with self-care such as) washing all over or dressing? 5. Using your usual (customary) language, do you have difficulty

communicating, for example understanding or being understood?6. Do you have difficulty remembering or concentrating?7. Do you have difficulty raising a 2 litre jug of water from waist to eye level?8. a) For Children: [Do you / Does (name)] have difficulty learning new

things?b) For Adults: Do you have difficulty understanding and using information like

following directions to get to a new place?

(Pain, affect and fatigue – not able to measure using a single question therefore not included)

3. The Extended set

1. Vision

Q1.1 Do you wear glasses or contact lenses?1)Yes; 2) No

Interviewer: If “yes” to Q1.1, mention aid in Q1.2 and Q1.3.

Q1.2 Do you have difficulty clearly seeing someone’s face across a room [even if wearing your glasses or contact lenses]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q1.3 Do you have difficulty clearly seeing the picture on a coin [even if wearing your glasses or contacts]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

2. Hearing

Q2.1 Do you use a hearing aid?1) Yes 2) No

Interviewer: If “yes” to Q2.1, read aid phrase in Q2.2 and Q2.3.

Q2.2 Do you have difficulty hearing what is said in a conversation with one other person in a noisy room [even if using your hearing aid]?

1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Interviewer: If “no difficulty” to Q2.2, skip Q2.3

Q2.3 Do you have difficulty hearing what is said in a conversation with one other person in a quiet room [when wearing your hearing aid]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

3. Mobility

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Q3.1 Do you use any aids or equipment or receive help for walking or climbing steps?1) Yes 2) No

Interviewer: If “no” to Q3.1, skip to Q3.3.

Q3.2 Which of the following types of aids or equipment do you use?

Interviewer: Read the following list and record responses to each:

a. cane or walking stick? 1. yes 2. nob. walker? 1. yes 2. noc. crutches? 1. yes 2. nod. wheelchair? 1. yes 2. noe. someone’s assistance? 1. yes 2. nof. other? (specify: ________) 1. yes 2. no

Interviewer: If “yes” to Q3.1, read aid phrase in Q3.3, Q3.4 and Q3.5.

Q3.3 Do you have difficulty walking 500 meters on level ground, that would be about _________ (insert country-specific example) [without using your (insert aid(s) recorded in Q3.2)]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q3.4 Do you have difficulty walking 100 meters on level ground, that would be about _________ (insert country-specific example) [without using your (insert aid(s) recorded in Q3.2)]?

1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q3.5 Do you have difficulty walking up and down [insert country-specific example: a flight of stairs / 12 steps / a small hill] [without using your (insert aid(s) recorded in Q3.2)]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Interviewer: If “no” to Q3.1, skip Q3.6, Q3.7, and Q3.8.

Q3.6 Do you have difficulty walking 500 meters on level ground, that would be about _________ (insert country-specific example) [even if using your (insert aid(s) recorded in Q3.2)]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q3.7 Do you have difficulty walking 100 meters on level ground, that would be about _________ (insert country-specific example) [even if using your (insert aid(s) recorded in Q3.2)]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q3.8 Do you have difficulty walking up and down [insert country-specific example: a flight of stairs / 12 steps / a small hill] [even if using your (insert aid(s) recorded in Q3.2)]?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

4. Communication

Q4.1 Do you have difficulty speaking clearly (that is, using spoken language)?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do

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at all

Q4.2 Do you have difficulty making yourself understood when speaking?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Interviewer: If “difficulty” to Q4.1 or Q4.2, ask Q4.3.

Q4.3 Are you able to communicate any easier when using one of these non-spoken forms of communication?

Interviewer: Read the following list and record all affirmative responses:

a. sign language? 1. yes 2. nob. hand writing? 1. yes 2. noc. typed or text messages? 1. yes 2. nod. communication or picture board or cards? 1. yes 2. noe. an interpreter? 1. yes 2. nof. other? (specify: ________) 1. yes 2. no

5. Cognition

Two sets of questions were proposed for cognitive testing.

Set 5 A:

Q5A.1 On how many days during the last week have you had difficulty remembering important things?

Record number of days: ____________

Q5A.2 Thinking about the last time you had difficulty remembering, how much difficulty did you have?

Would you say 1) no difficulty, 2) a little difficulty, 3) a lot of difficulty, or 4) were you unable to do this?

OR

Would you say 1) no difficulty, 2) a little difficulty, 3) a lot of difficulty, 4) something in between a little and a lot of difficulty, or 5) were you unable to do this?

Set 5B:

Q5B.1 Do you have difficulty remembering a few things, a lot of things, or something in between?

1) a few things; 2) something in between; 3) a lot of things

6. Upper Body

Q6.1 Do you have difficulty raising a 2 litre jug of water from waist to eye level?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

Q6.2 Do you have difficulty using your hands and fingers, such as picking up small objects or opening or closing containers?1) No – no difficulty; 2) Yes – some difficulty; 3) Yes – a lot of difficulty; 4) Cannot do at all

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Q6.3 Do you use any special equipment or receive help with lifting, carrying or using your hands your hands or finger?1) Yes; 2) No

7. Learning

None developed.8. Affect

Set 8A:

Anxiety:

Q8A.1. How often during the past year did you feel anxious?a. Not at all; 2) Daily; 3) Weekly; 4) Monthly

Interviewer: If “not at all” to Q8A.1, skip to Q8A.4.

Q8A.2 Do you take any medication for anxiety?b. Yes; 2) No

Interviewer: If “yes” to Q8A.2, read medication phrase in Q8A.3.

Q8A.3 Thinking about the last time you felt anxious, how would you describe your level of anxiety [even when taking your medication]?Would you say 1) none, 2) a little, 3) a lot, or 4) something in between a little and a lot?

Depression:Q8A.4 How often during the past year did you feel depressed?

1) Not at all; 2) Daily; 3) Weekly; 4) Monthly

Interviewer: If “not at all” to Q8A.4, skip to next domain

8A.5 Do you take any medication for depression?1) Yes; 2) No

Interviewer: If “yes” to Q8A.5, read medication phrase in Q8A.6.

Q8A.6 Thinking about the last time you felt depressed, how would you describe your level of depression [even when taking your medication]?Would you say 1) none, 2) a little, 3) a lot, or 4) something in between a little and a lot?

Set 8B:

Q8B.1 Do you take any medication for anxiety or depression?1) Yes; 2) No

Interviewer: If ‘no’ to Q8B.1, skip to next domain.

Q8B.2 On how many weeks during the past year did you feel anxious?Record number of weeks: _________________

Interviewer: If “yes” to Q8B.1, read medication phrase in Q8B.3.

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Q8B.3 During those times when you felt anxious, how would you describe your level of anxiety [even when taking your medication]?Would you say 1) none, 2) a little, 3) a lot, or 4) something in between a little and a lot?

Q8B.4 On how many weeks during the past year did you feel depressed?Record number of weeks: _________________

Interviewer: If “yes” to Q8B.1, read medication phrase in Q8B.5.

Q8B.5 During those times when you felt anxious, how would you describe your level of depression [even when taking your medication]?Would you say 1) none, 2) a little, 3) a lot, or 4) something in between a little and a lot?

9. Pain

Set 9A:

Q9A.1 Do you use medication for pain? - or - Are you taking medication for pain?1)Yes; 2) No

Q9A.2 On how many days during the past week did you have pain? Would you say 1) none, 2) 1-2 days, 3) 3-4 days, or 4) 5 or more days?

Interviewer: If “none” to Q9A.2, skip Q9A.3 and Q9A.4.Interviewer: If “yes” to Q9A.1, read medication phrase in Q9A.3, Q9A.4 and Q9A.5.

Q9A.3 Thinking about the last time you had pain, how long did the pain last [even when taking your medication]? Would you say 1) under 1 hour, 2) 1-2 hours, or 3) more than 2 hours?

Q9A.4 Thinking about the last time you had pain, how would you describe the level of pain [even when taking your medication]? Would you say it was 1) none, 2) a little, 3) a lot, or 4) somewhere in between a little and a lot?

Q9A.5 Thinking about the last time you had pain, was your experience of pain usual, worse than usual, or better than usual [even when taking your medication]?

1) The same as usual; 2) Worse than usual; 3) Better than usual

Set 9B:

Q9B.1 Do you have chronic or frequent pain? 1) Yes; 2) No

Q9B.2 Do you use medication for pain? - or – Are you taking medication for pain?1)Yes; b) No

Interviewer: If “no” to Q9B.1, skip Q9B.3.Interviewer: If “yes” to Q9B.2, read medication phrase in Q9B.3.

Q9B.3 Thinking about the last you had pain, how would you describe the level of pain [even when taking your medication]?Would you say it was 1) none, 2) a little, 3) a lot, or 4) somewhere in between a little and a lot?

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10. Fatigue

Q10.1 Do you have chronic or frequent feelings of being tired?1) Yes; 2) No

Q10.2 How often during the past year did you have chronic or frequent feelings of being tired? Would you say 1) daily, 2) weekly, 3) monthly, 3) less than monthly, or 4) not at all?

Interviewer: If “not at all” to Q10.2, skip Q10.3.

Q10.3 Thinking about the last time you felt tired, how would you describe the level of tiredness? Would you say it was 1) none, 2) a little, 3) a lot, or 4) somewhere in between a little and a lot?

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ANNEXURE 5

WHO-Disability Assessment Schedule

The World Health Organization has designed a set of Disability Assessment Schedules (known as the WHO-DAS) which have a long series of activity and participation based questions. Their 12-question set is given below:

In the last 30 days how much difficulty did you have in:(None Mild Moderate Severe Extreme Cannot Do)

Standing for long periods such as 30 minutes?Taking care of your household responsibilities?Learning a new task, for example, learning how to get to a new place?How much of a problem did you have joining in community activities (for example, festivities, religious or other activities) in the same way as anyone else can?How much have you been emotionally affected by your health problems?Concentrating on doing something for ten minutes?Walking a long distance such as a kilometre [or equivalent]?Washing your whole body?Getting dressed?Dealing with people you do not know?Maintaining a friendship?Your day to day work?

Source: World Health Organization: http://www.who.int/icidh/whodas/index.html

Taken from: http://siteresources.worldbank.org/DISABILITY/Resources/Data/MontPrevalence.pdf

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ANNEXURE 6

List of Respondents

1. A.S. Narayanan, National Association of the Deaf, Delhi 2. Dr. Achal Bhagat, Saarthak, New Delhi3. Akhil Paul, Sense International – India, Ahmadabad4. Amitabh Mehrotra, SPARC-India, Lucknow5. Arman Ali, Shishu Sarothi, Guwahati6. Arun C. Rao, The Deaf Way, New Delhi7. Asha Mehra, Swavalamban, New Delhi8. Avelino de Sa, Disability Rights Association of Goa, Panjim9. B. Venkatesh, Timbaktu Collective, Anantapur District 10. Carmo Noronha, Bethany Society, Shillong11. Chhingpuii, Spastic Society of Mizoram, Aizawl12. D. M. Naidu, Basic Needs, Bangalore13. Dipendra Manocha, Saksham Trust, New Delhi14. Dr. Ashwini Kr. Agarwal, Working with Punjab National Bank, Associated

with as Jt. Secy. National Association for the Blind and Hon. Vice-President (North India) National Abilimpics Association of India, New Delhi

15. G. Syamala, Action for Ability Development & Inclusion (AADI), New Delhi16. Gautam Chaudhury, Kolkata17. Geet Oberoi, Delhi Learning Disabilities Association, New Delhi 18. George Abraham, Score Foundation, New Delhi19. Maj. Gen. (Retd) Ian Cardozo, AVSM, SM, Rehabilitation Council of India 20. Dr. J. S. Arora, National Thalassemia Welfare Society, New Delhi21. Javed Ahmad Tak, Humanity Welfare Organisation HELPLINE NGO, Jammu

& Kashmir22. Jayshree Raveendran, Ability Foundation, Chennai 23. Jo Chopra, Latika Roy Foundation, Dehra Dun24. Jose M. V., AIFO, Bangalore25. Kapil Kumar Aggarwal, Viklang Sahara Samiti Delhi, New Delhi 26. Dr. Karan Sharma, Department of ENT, Govt. Medical College, Amritsar27. Kate Currawalla, Maharashtra Dyslexia Association, Mumbai 28. Dr. Ketna L. Mehta, Nina Foundation, Mumbai 29. Kshama Metre, CORD (Chinmaya Organisation for Rural Development),

District Kangra 30. L. Lobithas, ODA, Trichy 31. Laishram Tokendra Ricky, Spastic Society of Manipur, Imphal 32. M. Srinivasulu, Network of Persons with disabilities organizations (NPd0)33. Madhu Singhal, Mitra Jyothi, Bangalore34. Dr. Madhumita Puri, Society for Child Development, New Delhi35. Mahesh C., CBR Forum, Bangalore36. Meenakshi B., MBA Foundation, Mumbai 37. Dr. Meenu Bhambhani, MphasiS, Bangalore 38. Merry Barua, Action for Autism, New Delhi39. Mohan Choudhary, Bihar Viklang Kalyan Parishad, District Muzaffarpur 40. Mohd. Iqbal, People’s Action Group for Inclusion and Rights (PAGIR), Leh-

Ladakh41. Nilesh Singit, Consultant, Mumbai 42. Nirmita Narasimhan, Centre for Internet and Society (CIS), Bangalore43. Dr. P. Ngully, Spastics Society of Nagaland, Kohima44. Poonam Natarajan, National Trust for the Welfare of Persons with Autism,

Cerebral Palsy, Mental Retardation and Multiple Disabilities, New Delhi45. Preeti Johar, Family of Disabled, New Delhi46. Dr. R. Narayanan, The Pondicherry Physically Handicapped Welfare

Association, Puducherry 47. Rahul Cherian, Inclusive Planet, Chennai

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48. Rajesh Asudani, The Reserve Bank of India, Associated with Saksham Nagpur, National Organization for the Integration of the Blind, Nagpur

49. Rajiv Rajan, Vidya Sagar, Chennai50. Lt. Col. Ravi Bedi, Youth Technical Training Society, Chandigarh51. Romesh Sharma, J & K Handicapped Welfare Association, Jammu52. S. K. Verma, Viklang Sanskar Tirth Trust, Ahmedabad 53. Dr. Sam Taraporevala, XRCVC, Mumbai54. Saswti Acharya, Ankur Advocacy Group, Indian Institute of Cerebral Palsy,

Kolkatta55. Shampa Sengupta, Sruti Disability Rights Centre, Kolkata 56. Shanti Auluck, Muskaan, New Delhi57. Shivani Gupta, AccessAbility, New Delhi58. Dr. Sruti Mohapatra, Swabhiman, Bhubaneswar59. Sudha Balachandra, National Society for Equal Opportunities for the

Handicapped (NASEOH), Mumbai60. Sudha Lhila, Deepshikha, Ranchi61. Suhas V. Karnik, National Association for the Blind, India, Mumbai62. Dr. Sunanda K. Reddy, CARENIDHI, New Delhi 63. Dr. Sunil Kumar Singh, Adarsh Viklang Seva Sansthan, Samastipur 64. Dr. Suresh Hanagavadi, Hemophilia Federation (India), New Delhi 65. Thilakam Rajendran, Association for Rehabilitation under National Trust

Initiative of Marketing (ARUNIM), New Delhi66. Vaishnavi Jayakumar, The Banyan, Chennai67. Fr. Valeriano Vaz, CARITAS-GOA, Panjim 68. Vandana Bedi, Independent Consultant – Disability & Development, New

Delhi69. Victor John Cordeiro, Leonard Cheshire Disability, Bangalore70. Vidhya Kalyani, Chief Advisor, People’s Action Group for Inclusion and

Rights (PAGIR), Leh-Ladakh 71. Zamir Dhale, Sense International – India, Ahmadabad 72. Zeenat A. Ali, Dwar Jingkyrmen, Shillong

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