Task force on Information

A report developed by RNN Task Force on Information, January 2004

Coordinator: Hisao Sato (Japan)

Progress in Disability Statistics

Summary

Disability statistics from each country in Asia and the Pacific region were compared, one collected before the Decade and the other during the Decade.
Among 16 countries/areas on which comparison was possible, increase of prevalence of persons with disabilities was reported from 10 countries (Australia, Bangladesh, Fiji, Indonesia, Japan, Kiribati, Korea, Mongolia, Pakistan, and Thailand), decrease from 3 (Cambodia, Nepal and Sri Lanka), and no big difference from 3 (Hong Kong SAR, New Zealand and Philippines). The number of countries which use census or registration as a main source of information has decreased from 6 (Hong Kong SAR, Indonesia, Kiribati, Mongolia, Philippines and Sri Lanka) to 3 (Fiji, Philippines and Sri Lanka). These countries can be divided into 5 sub groups based on the recent prevalence, i.e. those around 20%, 8-9%, around 5%, around 3% and 1-2%.
In general reported prevalence among AP countries has generally increased during the Decade, but still big difference exists when compared with European and North American countries and also among themselves.
Countries were divided into 4 categories according to the development of disability statistics, i.e., countries in which effective data collection, (A) had been made before and during the Decade (Australia, Korea, New Zealand, Pakistan and Thailand, etc.); (B) had not been made before, but made during the Decade (Hong Kong SAR, India, Malaysia, Maldives, Mongolia and Vietnam, etc.); (C) had been made before, but not made during the Decade (China and Myanmar, etc.); (D) had neither been made before nor during the Decade (PNG and Singapore, etc.). Most of the countries from which enough information was not obtained would be classified in D.
In the second AP Decade (2003-2012) initiatives for disability data collection should focus on (1) the use of ICF framework for reliable and comparative statistics, (2) the sub-regional gap: the Pacific and most of the North and Central Asia countries need more supports, (3) international cooperation: UN Statistics Division, ESCAP, SIAP, APCD, APDF, WHO, ILO, UNICEF and other organizations are expected to work with governments and NGOs to produce and use national disability statistics.

Introduction

The first period of the Asia and the Pacific Decade of Disabled Persons ended in 2002 and the task to collect reliable information on persons with disabilities in national level had not achieved in most countries in this region, although some progress have been made. This serious situation was clearly pointed out in section 54 of the BMF.

54. Lack of adequate data has been one of the most significant factors leading to the neglect of disability issues, including the development of policy and measures to monitor and evaluate its implementation, in the region. In many developing countries, the data collected do not reflect the full extent of disability prevalence. This limitation results in part from the conceptual framework adopted, the scope and coverage of the surveys undertaken, as well as the definitions, classifications and the methodology used for the collection of data on disability. It is also recognized that a common system of defining and classifying disability is not uniformly applied in the region. In this connection, a wider usage of the International Classification of Functioning, Disability and Health in countries of the region will be expected to provide a base for the development of such a common system of defining and classifying disability.

ESCAP, BMF(BIWAKO MILLENNIUM FRAMEWORK FOR ACTION TOWARDS AN INCLUSIVE, BARRIER-FREE AND RIGHTS-BASED SOCIETY FOR PERSONS WITH DISABILITIES IN ASIA AND THE PACIFIC)2002

Higher Prevalence among European and North American Countries

Low (estimated) prevalence leads to low awareness, i.e., "disability as a small minority problem," which further leads to low priority in government policy.
As shown in the table 1, the prevalence of persons with disabilities in European and North American countries has been around 10 to 15% of total population even in 1980s and early 90s. These figures may have become higher (around 20%) in recent years due to population aging and increase of disability awareness in these countries. But updated information was not available for this paper.

It would be easily understood that the difference of reported prevalence between Asia/Pacific and Europe/North America, i.e., several times or even 10 times difference, does not reflect the reality, but mainly difference in the ways of data collection. European and North American countries has been using sample survey focusing on disability issues rather than census with a disability question or disability registration (or administration records). They use "Activity Limitations((Disabilities)" or "Participation Restrictions (Handicaps)" as a screening criteria rather than "Impairments". And therefore they better covered and included persons with disabilities due to mental health problems and other chronic diseases.

Table 1. Prevalence in Europe and North America in 80s and early 90s

Comparison of prevalence in AP region before and during the Decade

For this paper I have compared two disability statistics from each country in Asia and the Pacific region, one collected before the Decade and the other during the Decade, as shown in the ANNEXED TABLE. Where more than one was found, most recent one was used. As a principle, I have picked up only national data covering all age and collected by government.
In the annexed table I have recorded Country, Year of data collection, Method, Prevalence, Screening questions to identify persons with disabilities where it was available, and references. As the purpose of this paper is to have an overview of the progress in disability statistics during the Decade, I have excluded more detailed information than total prevalence, i.e. composition according to age, sex, disability type, rural/urban etc. from the table.

Information was not available for many of the nearly 60 member countries of UN ESCAP. Today, many countries have the government's Statistics Department Homepages with English even in non-English speaking countries. But they rarely display disability statistics even in countries which has them in local language. Most of the English information are basic demographic and economic ones.

Table 2 was produced based on the Annexed Table to compare before and during the Decade. Among 16 countries/areas on which comparison was possible between before and during the Decade, higher prevalence during the Decade was reported from 10 countries, lower prevalence was reported from 3 (Cambodia, Nepal and Sri Lanka), and no big difference was reported from 3 (Hong Kong SAR, New Zealand and Philippines). The number of countries which use census or registration as a main source of information has decreased from 6 (Hong Kong SAR, Indonesia, Kiribati, Mongolia, Philippines and Sri Lanka) to 3 (Fiji, Philippines and Sri Lanka).

Table 2. Comparison of prevalence in AP region before and after the Decade (alphabetical order)

Table 2 was converted into Table 3 in which countries are displayed according to the prevalence of persons with disabilities. The new table shows that these countries can be divided into 5 sub groups based on the prevalence, i.e. those around 20%, 8-9%, around 5%, around 3% and 1-2%.

In a word, reported prevalence among Asia and the Pacific countries has generally increased during the first Decade, but still big difference exists when compared with European and North American countries and also among Asia and the Pacific countries themselves.

Table 3. Comparison of prevalence in AP region before and after the Decade(in order of prevalence)

We can further analyze the progress of disability statistics in each country by using the data compiled in the Annexed Table with some other resources. Countries can be divided into 4 categories in the development of disability statistics, i.e., countries in which effective data collection:

1. had been made before and during the Decade;
2. had not been made before, but made during the Decade;
3. had been made before, but not made during the Decade;
4. had neither been made before nor during the Decade.

Most of the countries from which enough information was not obtained would be classified in D.

A. Examples of countries in which effective data collection had been made before and during the Decade

This group includes Australia, Korea, New Zealand, Pakistan and Thailand.

Table 4 shows two lists of questions used to screen in, in the survey in 1988 and 1998 in Australia. Five new questions added and some questions were modified. For example, the 5th line of the Table 4 says "Chronic or recurring pain that restricts everyday activities" and 6th "Shortness of breath or breathing difficulties that restrict everyday activities". These questions would have already been included partially in the questions in 1988 in 13th line "Restriction in physical activity or physical work" or in 17th line "Long term treatment of medication for a condition, and still restricted". But 1998 survey introduced 5th and 6th question and other related questions and remained to use 13th and 17th questions. With the use of new, independent and concrete questions, people would be able to respond more easily.

Table 5 shows that Korea extended definition or category of disability in 2000 survey. With the introduction of new categories, i.e. brain lesion, developmental (autism), mental (psychiatric), kidney, heart disability/impairment, prevalence increased considerably.

New Zealand has been using broad categories of disabilities or activity limitations as screening criteria. They are phrased as an easy sentence to understand and respond reflecting day to day activities, such as "Can you hear what is said in a conversation with one another person?", "Can you dress and undress yourself?", or "Do you have a condition or health problem, which has lasted or is expected to last for 6 months or more, that makes it hard in general for you to learn?"

Pakistan and Thailand used sample survey with broad definition of disability including intellectual as well as mental (psychiatric) disability to collect disability information.

Table 4 Australia: questions/categories to identify person with a disability

Table 5 Korea: Broadened coverage in the survey

B. Examples of countries in which effective data collection had not been made before, but made during the Decade

This group includes Hong Kong SAR, India, Malaysia, Maldives, Mongolia and Vietnam.
Hong Kong SAR had been depending on registration but carried out a region wide survey in 2000 with an operational definition of disability (Table 6).

Table 6. Definition of people with disabilities in HK survey 2000

In India, definition of disability had been very restricted even in the sample survey in 1991 as "visual disability, hearing and/or speech disability, and locomotor disability". Completely new definition was used in the Census 2001 (Table 7). Disability question was not included in the census 1991 as a results of low and unreliable prevalence of 0.16% produced by the census 1981, which used very limited and stigmatized terms of impairments. Result of the disability component of the census 2001 has not yet released at this moment.

Table 7. Disability questions in censuses in India

Dr. Madhumita Puri, "Disability To Be Included in Census 2001", EQUITY, special issue, Oct. 2000

C. Examples of countries in which effective data collection had been made before, but not made during the Decade

This group includes China and Myanmar.

In China a nation wide survey of persons with "vision impairment; hearing and speech impairment; intellectual impairment; physical impairment; psychiatric impairment" was conducted in 1987. It covered wide range of impairments including "psychiatric impairment", although "visceral impairments" or "impairments of internal organs" was missing.

However, this efforts has not been followed by a new and updated survey during the Decade, provably due to its impairment oriented planning of the survey. In 1987 China survey, 369,448 families and 1,579,316 persons were sampled and reported their situations according to the Screening Form. And all targeted disabled persons received medical examination and grading of disability on basis of Criteria for Disability Classification. Finally 66,902 families with disabled persons and 77,345 disabled persons were identified.

Medical examination was given by medical teams to more than 80,000 people in 1987. A huge budgets would be needed to do this again.

D. Examples of countries in which effective data collection had neither been made before nor during the Decade

This group includes PNG and Singapore.

Challenges in the Second AP Decade

Various stakeholders played important role for reliable information on persons with disabilities in AP region during last Decade. For example, organizations of persons with disabilities were main driving force to persuade the Census Commission in India to include improved questions in census2001. Mass media such as newspapers continuously supported this movement. People with disabilities, i.e. "end users" of disability statistics and organizations of and for them should work in this area as people in India did.

International Government Organizations have made remarkable contributions recently in this field.
Workshops on disability statistics were organized by SIAP (Table 8) and recently by ESCAP. ESCAP Workshops on Improving Disability Data for Policy Use was sponsored by the Statistics Division (SD) and the Emerging Social Issues Division (ESID) and held in Bangkok, Thailand, from 23 to 26 September 2003. The workshop was conducted within the framework of the Biwako Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific (BMF).

These are all very recent initiatives and fruits will be produced near future. These initiatives of IGOs should be continued and strengthened, especially at sub-regional levels. Table 9 shows that the Decade activities had not been carried out evenly in this region. The Decade Declaration was signed by all government leaders in East, North East and South East Asia countries, and by most of South and South West Asia countries in the early stage of the Decade, but some of the Pacific countries and most of the North and Central Asia countries have not yet signed at this moment. This sub-regional gap can be seen also in the national activities for disability statistics.

Of course each government is responsible to collect disability information.
Their efforts should be exchanged and shared. The recommendations adopted by the ESCAP Workshop last September need to be implemented by each government. And in this implementation, ICF framework and guidelines suggested by UN Statistics Division should be fully utilized.

At the same time we will be able to use, and contribute to, the database established by APCD on disability information. The first Decade focused on the awareness raising, and the second Decade needs more concrete information to achieve rather concrete change given by BMF.

Table 8. SIAP Workshops on Disability Statistics

Hosted by Statistics Institute for Asia and the Pacific

Table 9. Signatories of Decade Declaration(43/57) ESCAP

Main parts of this paper were originally presented at the JCSW International Seminar on Social Welfare in Asia and the Pacific 2003, 13-14 November, 2003, TOKYO