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The 3rd Asia-Pacific CBR Congress

CBR Congress Paper Presentation Details

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Submitted Paper Abstract

Disability Inclusion in the 2014 Myanmar Population Census

The government of Myanmar conducted its most recent census in 2014, which was more than 30 years since the last census in 1983. As with many other countries, this census was seen as an opportunity for to gain key data and information about people with disability in Myanmar.

The Leprosy Mission Myanmar was successful in lobbying for the inclusion of the Washington Group Disability Questions into the census, amid strong opposition and misunderstanding about disability from the organisers of the Census. Over a period of 9 months prior to the census, TLMM was in contact with the Myanmar Government’s Ministry for Immigration and Population; the UNFPA, which was providing technical support to the government; and representatives from the Washington Group; to raise awareness about disability and ensure questions identifying people with disability were included.

The Washington Group on Disability Statistics has developed and tested a set of questions for use in national Censuses. They capture ‘at risk’ populations where risk is increased as a result of difficulties experienced in basic functional domains or actions such as seeing, hearing, walking, cognition, self care and communication. The process that was used in achieving this successful inclusion is outlined in this presentation.

(199 words)

Presentation Number: 94955
Name of the Presenter: Dr Kay Khaing Win
Presenter’s Organisation: The Leprosy Mission Myanmar
Presenter’s Email Address: dr.kaykhaing@gmail.com

Title of Presentation: Disability Inclusion in the 2014 Myanmar Population Census

In Myanmar, from 1962 to 2011, under military rule, there was little investment in health, education and other basic entitlements. After the elections in November 2010, a new civilian-led government initiated the planning process for the Myanmar Population and Housing Census, which was conducted between 29th March to 10th April 2014. The successful planning, enumeration and publishing of the results reveals the Government’s commitment to political and economic reform, national cohesion and inclusive development. It was the first census for over 30 years (since 1983).

Partnerships and Collaboration

The Myanmar 2014 census was coordinated by the Central Census Commission, Department of Population (DoP), Ministry of Immigration and Population. However technical support was provided by United Nations Population Fund (UNFPA) and UK Department for International Development (DFID). The Department of Social Welfare (DSW) and The Leprosy Mission Myanmar (TLMM) were leaders in the disability sector. TLMM invited Daniel Mont from the International Disability and Development Consortium (IDDC) and the LC Disability and Inclusive Development Centre, University College London, to represent the Washington Group. The European Union (EU) and Tear Fund were donors of the disability promotional materials and Myanmar Radio and Television (MRTV) and National Races Channel (NRC) made the public education announcements.

Finding Best Practice

This census was an opportunity to gain key data about people with disability in Myanmar. However, initially the Census Commission was not interested in including disability questions. The DSW and TLMM highlighted the importance of disability inclusion. When identifying best practice for census disability data collection, TLMM’s country leader attended an IDDC meeting in May 2013, ten months before the census, and met with Daniel Mont, a representative for the Washington Group.

The Washington Group on Disability Statistics (WG) was organized in 2001 following the United Nations International Seminar on Measurement of Disability. It facilitated the measurement of disability and the comparison of data on disability cross-nationally, by focusing on disability measures suitable for censuses and national surveys. The national census questions reflect advances in the measurement of disability and use the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) as a conceptual framework.1 The WG questions provide comparable data on limitations in basic activity functioning cross-nationally for populations living in a variety of cultures with varying economic resources.2

The questions ask about health-related difficulties in six core functional domains: seeing, hearing, walking, cognition, self care, and communication, as follows: 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 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)?3 Each question has four scaled response categories: (1) No, no difficulty, (2) Yes, some difficulty, (3) Yes, a lot of difficulty and (4) Cannot do it at all. The scale is used in the responses to capture the full spectrum of functioning from mild to severe.4

Awareness Raising

One of the biggest obstacles was that the Census Commission, the International Technical Advisory Committee and the Disabled People’s Organisations all believed the WG questions were too difficult to understand and use. So the ‘Statement of rationale for the Washington Group general measure on disability’5 was used to explain choice and reasoning behind the questions.

Information on disability needs to be collected accurately, but must also be sensitive to the respondents, so they do not feel offended or embarrassed. The questions should be asked of everybody in the household. The Census Commission felt that those with chronic illnesses and old age diseases should not be mistaken as disabled. But WG explained that when thinking about disability, it is about what a person can do - not the reasons for not being able to do it. Age and disease are major causes of disability. If a person cannot walk or care for themselves because they are very old or sick, they are still disabled, no matter the reason. Elderly people have medical and rehabilitation needs, and they have a right to participate in community, religious and social events. If they do not have the support they need, their children and grandchildren have the extra responsibility of caring for them, and this can impact on their schooling and work. So identifying people with disability is important for the development of public policy.

The wording of the questions was important. Disability is a sensitive and often negative issue in many countries. It requires care and tact when asking the questions. It is possible that some households do not want a disabled household member to be counted. It is necessary to explain that disability information is important to collect for all persons in Myanmar. Use of the word ‘disability’ will produce a lower prevalence rate because people with mild or moderate issues will be missed. Also, older people don't think of themselves as ‘disabled’ or ‘impaired’. They just think of themselves as "old". That is why using a phrase like "Do you have difficulty" doing something, combined with the scaled response, tends to avoid these problems. As well, it is harder to answer “do you have a visual impairment?” rather than "do you have difficulty seeing?". People know about seeing, but they might be confused as to whether they have impairment. It is best NOT to even use the words ‘disability’ or ‘impairment’.

Another issue was that Census Commission did not want to ask more than 4 questions on disability, so they wanted clarification and prioritization from the recommended 6 questions. They did not see the value of questions 5 (self-care) and 6 (communication). The self-care question is important because it picks up a wide range of significant disabilities (eg, upper-limb disabilities) and those who are in particular need of disability benefits. In most countries, this question is considered the most important question and some censuses have used only this question to identify disability. The communication question is important for picking up people with a wide range of issues (eg. developmental disabilities, autism, etc). But the first four questions will still identify the majority of people with disabilities.

Also understanding the scaled response options was thought to be too complicated for both enumerators and responders. While there were 40 other thematic questions for the enumerators to ask, spending more time on one area of data seemed too much. However, WG argued that it is very important to have the scaled responses. If the responses are only ‘yes/no’ questions, the prevalence rate can be reduced by well over 50%. The scaled answers posed no problems for people, and yield MORE accurate data because it also identified those with mild disabilities.

Advocacy for Inclusion

More discussion was had around the government prioritizing disability inclusion. Partners urged the government raise the disability interest to equal with ethnicity or religion. Myanmar has already signed and ratified UN CRPD and having comprehensive disability data is essential.

DFID joined the discussions at a later stage, but agreed that the disability questions devised WG are considered the best currently available, and are the most widely accepted methodology to measure disability prevalence. DFID assisted the International Technical Advisory Board and the Myanmar Census Commission to finally agree that the questionnaire would cover the short version of the WG questions. The UN's Principles and Recommendations for Population Censuses suggest a minimum requirement of the four main domains of walking, seeing, hearing and cognition.

Capacity Building

The Census Commission also developed a census manual on instructions for data collection, which included explanation about the WG questions, and translated it into Myanmar. The manual was an important tool for enumerators to understand the four disability domains and scaled answers. Comprehensive disability training sessions for census enumerators (100,000) and census supervisors (20,000) were conducted. These were for primary and middle school teachers, who would usually be on summer break, but who were recruited for the census data collection.

Again, among the partners there was discussion about the need for training on disability data collection. Some felt the WG questions designed for a census were already clear and did not require explanation. Enumerators would just ask the question, exactly as worded, and not add their own interpretation or opinion. If the respondent wasn't sure how to answer, the question was repeated. However, TLMM and Daniel Mont argued that when asking disability questions, sometimes there are additional issues to be aware of, particularly if there is stigma or cultural issues associated with disability.

Additions to the standard training included: 1) The interviewers trained NOT to mention the word disability, but to only ask the questions as written, about difficulties doing certain things. 2) They must ask the questions, and not be uncomfortable and just "look around" to see if they see any disabled people in the household. This has happened in some countries in the past. If they do this, they miss people who are hidden away or people who have "invisible" disabilities. For example, someone who is deaf but who is in the corner of the house cooking during the interview won't appear disabled. 3) They should be given tips on how to interact with disabled people so they are not uncomfortable with them.

The Census Commission was encouraged to use the UNESCP training manual on collecting disability statistics (especially chapter 7) was used as a guide for training the enumerators on how the best way to conduct the interviews for the disability questions.6 DSW, TLMM and the disability partners felt training was essential to effectively increase understanding about disability for accurate data collection through the census.

Through a projects on the realization of disability rights in Myanmar, TLMM and DSW were able to prepare 30,000 copies of a training DVD for the census supervisors and enumerators to watch. This included an interview to teach census enumerators and supervisors how to ask the questions. One DVD was shared between 4-5 enumerators, and watched together with their supervisors in preparation for the census. Those DVDs were used in conjunction with the census manual, and a two-page disability card was provided for each supervisor and enumerator, to use during their field census collection.

In addition, TLMM and DSW produced two disability advocacy videos (5 and 15 minutes long) to run as a public awareness campaign, on different television channels in Myanmar. Those videos were designed to raise awareness amongst the public about the need to include people with disability in the household count, during the census. It aimed to discourage the tendency to feel ashamed of or hide family members who have disability, highlighting the importance of their equal rights as fellow human beings. Myanmar Radio and Television (MRTV) offered to translate the videos into different ethnic languages using language sub-titles or voice-overs. These translations were aired through the National Races Channel (NRC), a designated TV channel to reach to ethnic people in Myanmar.

Learning

The Myanmar Census was finally conducted between 29th March and 10th April 2014. A team of 23 people from 20 different nationalities conducted independent observation during the census period, together with another 23 Myanmar nationals.

Participation in the Myanmar 2014 census showed that there is no need to reinvent the wheel. It usually has been done before, and processes and learning can be adopted by others. It is possible to find the current best practice to follow. The Census Commission appreciated the practical support provided by the disability sector to improve the census disability data collection.

Even after census completion, areas for improvement were found. Although the training specifically mentioned that the disability questions should be asked to each household member, whether they appeared disabled or not, there were still reports that census enumerators sometimes skipped the disability questions, if they did not observe any obvious people with disability in a household. Census personnel felt that the enumerators might tend not to ask any disability related questions, because the questions were thought to be too ‘intrusive’ and ‘offensive’ to household members. Work still needs to be done in future censuses to rectify this problem.

The UNFPA hired 4 experts to meet with all the stakeholders in Myanmar to identify the information to be included in the census reports. These experts will encourage Myanmar’s government to produce realistic reports rather than only the reports they would like to report. This is also an opportunity for the disability sector to have input into the types of reports they want to see produced about the disability data collected.

All in all, the Myanmar 2014 Census, was a great opportunity for dialogue and awareness raising about disability rights and inclusion. Much was learned and in the process the known disability prevalence was raised from 2.3 (2009 National Disability Survey7) to 4.6 (2014 Myanmar Census).


1 The Measurement of Disability, Recommendations for the 2010 Round of Censuses, Washington Group on Disability Statistics (WG)

2 Statement of rationale for the Washington Group general measure on disability

3 The Measurement of Disability, Recommendations for the 2010 Round of Censuses, Washington Group on Disability Statistics (WG)

4 The Measurement of Disability, Recommendations for the 2010 Round of Censuses, Washington Group on Disability Statistics (WG)

5 Statement of rationale for the Washington Group general measure on disability

6 http://www.unescap.org/stat/disability/manual/

7 First Myanmar National Disability Survey, Department of Social Welfare (DSW) and The Leprosy Mission International (TLMI) in 2009


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