Strategy for Mainstreaming Disability

Human Development Department

South Asia Region

I.Introduction

Disability is a significant obstacle in reducing poverty. The two-way link between poverty and disability creates a vicious circle. Poor people are more at risk of acquiring a disability because of lack of access to good nutrition, health care, sanitation, as well as safe living and working conditions. Once this occurs, people face barriers to the education, employment, and public services that could help them escape poverty. These barriers include intense stigma, as well as barriers related to infrastructure, service delivery and program design.

There is a growing body of evidence on disability as an important development issue. Its links to poverty, as a barrier to achieving the MDGs, and influence on vulnerability and social/economic/political exclusion are being better documented in numerous small and large scale international studies. In South Asia alone, there are an estimated 150 million people living with disabilities, affecting up to 16 percent of households in some South Asiancountries. Most countries have national acts and/or policies in place regarding Persons with Disabilities (See Annex I), yet implementation is lagging, budgets to support them are inadequate, and enforcement of laws and employment quotas is close to nonexistent.

Does the Bank have a comparative advantage or mandate to work in the area of disability? Despite the paucity of accurate or consistent information on the subject, the team can make the following observations:

Ignoring disability frustrates the achievement of many of the outcomes of our countries’ assistance strategies. For example, a significant number of dropouts in the early years of school are likely due to mild, undetected disabilities which could be easily accommodated at little or no cost. Health indicators of infant mortality and morbidity, and maternal health could improve more quickly with attention to disability prevention.

If most developing countries actually have a 10-15 percent prevalence rate of disability as estimated by WHO and the Bank, there is a cost to having that population unable to fully participate in social and economic activity. On the contrary, there is a higher cost to society for their dependency, the services they might require, and potential burden on their family members if their impairments get worse.

People with mild to moderate disabilities could improve their productivity with low cost early interventions, education, access to services, eliminating barriers of stigma, vocational training and use of infrastructure. A one percent investment in project cost to make infrastructure accessible at the design stage could save significantly over expensive retrofitting later.

Without addressing disability, countries in South Asia cannot hope to achieve the MDGs in education, health, poverty or gender. For people with disabilities, poverty is cyclical and multidimensional, characterized by:

  • Material deprivation (low consumption, poor housing)
  • Low human development (lack of education and access to health services)
  • Lack of voice and ability to influence decisions that affect their lives
  • Acute vulnerability to adverse shocks (illness, economic crises, natural disasters, conflict)

This strategy seeks to identify the issues confronting persons with disabilities (PWD) and their families, as well as the economic and social impact of excluding PWD from full participation in society. It will offer some solutions where the Bank could begin to engage more fully in the dialogue and work needed to address these issues.

II.Proposed Strategyand Program

The strategy for the Bank’s work on disability focuses on three key areas: mainstreaming disability into our operations, increasing our knowledge base so as to inform policy and understand the impact of disability on development, and raising awareness through outreach and support to government and civil society’s efforts. It will be implemented by:

  • Integrating disability into the Bank’s existing analytical and operational work and rather than embarking on a series of stand-alone projects. While the latter is not ruled out, our view is that mainstreaming disability is the most effective method for improving the lives of disabled through our work.
  • Primarily focusing on two countries: India and Pakistan, with the objective of demonstrating successful, deeper impact where there is ownership and dialogue with the country and CMU.
  • Supporting task teams in other countries through cross-support where there is a clear mandate, e.g.: Gemi Diriya in Sri Lanka and other CDD programs, and work to mitigate risk in conflict areas and in disaster situations.

Criteria for engagement in either a country or a specific program should remain: (i) ownership of the Bank and respective country with acknowledging the importance or work in the area of disability, and (ii) building momentum on existing work.

Specifically, the key activities in which we propose to engage in disability work over the next two years include:

A. Operationalizing Disability – Mainstreaming Prevention and Inclusion

In low income countries, in particular, preventive measures are the most cost effective means of reducing disability. However, cost effective means of improving the lives of disabled are also important for integrating disabled individuals into socio-economic life. Given the inter-sectoral nature of disability, these programs will need to be mainstreamed in our different sectors, through disability team members participating in project preparation and supervision in the coming FY. We also propose that our disability coordinator review projects in these countries at the CN stage in both focus countries to advocate for inclusion of disability, where it is feasible.

(1) Prevention: Three key preventive programs which we would proposed to be mainstreamed in our health, education and transport projects include:

Early detection programs/ focus on child nutrition (HNP-ICDS India)

School screening for impairments and disabilities (Early Childhood Education India/Education, Pakistan)

Traffic and Road safety Projects (Infrastructure, India and/or Pakistan)

(2) Inclusion: Using cost effective ways of including disabled into social services:

Design and implementation of an inclusive education pilot which could later be scaled up, integrating disability issues into DPCs (Pakistan)

Develop an inclusive approach to community based health and rehabilitation services as part of our ongoing operations (RCH, India (assuming it goes through), and Community Based Rehabilitation (Health/Social Welfare Pakistan)

Inclusive social protection (safety nets and social care services for disabled (Pak.SP).

Access and empowerment of disabled through CDD programs (India-AP, Gemi Diriya, SL)

Accessibility of infrastructure and all public buildings/spaces (all infrastructure projects in India and Pakistan)

B. . AAA: Increasing Knowledge and Improving Data on Disability

As noted above, the lack of knowledge about or agreed definition of disability hinders awareness about disability issues and impedes policy development and implementation. The main focus of this work would be to improve our data and information base on the incidence and type of disability. This involves the following key activities:

Region-wide, country based surveys. Working with governments/agencies’ statistics and household survey practitioners to improve and integrate disability in data collection, and building their capacity for measuring disability. Phase I wouldconduct a regional workshop with 2-3 key people from each country to (i) determine what information would be needed to inform policy and program development, (ii) agree on a definition of disability; (iii) develop questionnaires for piloting in their respective countries, and (iv) share lessons from other countries of what has and has not worked. Phase II would have the group reconvene after the Bank/Trust Funded pilot of the questionnaire to develop a plan for scaling up.

Conduct a review of existing surveys and census questionnaires and associated analyses.

One more flagship country study on disability similar to the one on India in Pakistan.

Smaller qualitative studies as demanded by the dialogue and gaps in our information.

Develop a training program for operational staff on disability in projects, train relevant staff in its use.

C. Awareness and Outreach

There has been a critical shift away from addressing disability as either a medical condition or charity towards a social, inclusive model of disability. The model seeks to address limitations on PWD in participation in the life of their society which are created by environmental factors (accessibility, attitudes of others), individual factors (gender, age, education) and the impairment(s) which the individual has. The Bank can ensure the full participation of PWD in its outreach and support to policy development by continuing to engage in:

Outreach and promotion through continued support to high visibility national conferences and seminars, such as the National Consultation on the Plan of Action for the Policy for Persons with Disabilities

Encourage inclusion of PWD and Disabled Person’s Organizations (DPO) in all these activities and provide continued support through our various small grant programs. Another Development Marketplace focused on disability would bring DPOs into the mainstream. Another Development Marketplace focused on disability would bring DPOs into the mainstream. Inclusion of PWD in CAS/other consultations.

III. Proposed Program and Related Budget

The existing SAR work program already contains specified funds for activities related to disability: (i) the Pakistan Earthquake Disability Project, (ii) preparation of a JSDF for an inclusive education pilot in Pakistan, (iii) completion of the Pakistan Safety Net study, (iv)dissemination of the India disability study, and (v) inclusive education in the Sri Lanka education program. Additional funding is requested for the following broad categories:

SAR Disability Work Plan/Budget: Regional Special Initiative Funds Only

Activity / Source of Budget / FY 06
‘000
(actual) / FY 07
‘000 / FY 08
‘000 / FY 09
‘000 / Total Regional Initiative Budget
FY 06-09
Operationalizing Disability
Support to operations, including PRSCs, etection programs, inclusive education, road safety, CDD projects, etc / Country Budgets and Trust Funds / 135 / 135 / 135
ESW and AAA
Regional capacity building to improve and integrate disability into data collection, training of relevant staff, etc.
Other country study, policy notes, demand driven qualitative studies / Regional Initiative
Country Budgets and OSF / 15 / 62.5
142.5 / 62.5
142.5 / 25
75 / 165
Outreach and Awareness
Dialogue with governments, conferences, seminars, dissemination, small grants, other outreach programs / Country Budgets and OSF / 110 / 110 / 110
SAR disability team
(2 x 1/2 Staff and 1 JPA) / Regional Initiative
Country Budgets / 35 / 52.5
112.5 / 52.5
112.5 / 15 / 155
TOTAL / 50 / 115 / 115 / 40 / 320

IV. Background: Lessons on Disability in South Asia – What emerged from our review

International evidence: Although there is still no agreed definition of disability, it is widely recognized that the national census data across the region narrowly defines disability in its more severe forms, thus grossly underestimating its prevalence as well as its social and economic impact. As a result, what social safety nets and targeted interventions exist in South Asian countries seldom have the desired impact on improving the lives of persons with disabilities in greatest need. Furthermore, some cost effective interventions which could prevent minor impairments from becoming disabilities – particularly in the early years of life – are weak or not undertaken at all.

The World Bank and UN often citea disability prevalence rate of about 10 percent, but quality data on disability does not generally exist for developing countries. Within developed societies, the prevalence rate is known to vary from 8 percent to over 20 percent.[1]

Many developing countries report very low rates of disability, often 1-3 percent. These low prevalence rates usually result from methodological weaknesses and different definitions in data collection. Recently, a few countries have adopted an approach to disability measurement based on the WHO’s International Classification of Functioning, Disability, and Health (ICF), and have thus started recording prevalence rates more in line with developed countries. For example, the 1991 Brazilian census reported only a 1-2 percent disability rate, but the 2001 census, using the improved approach, recorded a 14.5 percent disability rate. Similar jumps in the measured rate of disability have occurred in Turkey (12.3 percent) and Nicaragua (10.1 percent).

Cross-regional Prevalence Rates of Disability

The nature of disability and its extent can also vary across countries, depending on the main causes of disability. A study being presently undertaken by the World Bank finds that about 20 percent of the population of Bosnia is suffering from depression. Similar rates may apply in other post-conflict countries such as Afghanistan and Sri Lanka.

South Asia Evidence: In South Asia, prevalence rates are estimated by official surveys and census results to be quite low precisely because of the definition and measurement reasons mentioned above. Nonetheless, analysis of existing government data reveals a few critical facts about the social and economic impact of disability on PWD and their families.

South Asia Prevalence of Disability: Census Data vs. Special Surveys

Instrument / Afghanistan / Bangladesh / India / Pakistan / Sri Lanka
Census/HH Survey / 2.7 / 1.6 / 2.2 / 2.5 / 1.6
Special Survey / n/a / 13.3 / 6.8 / n/a / 4.0

Source: Draft National Disability Survey in Afghanistan; Bangladesh: GOB Survey1998 and Action Aid five locations surveys 1997; India: 2002 census, various on specials; Pakistan: 1998 census; Sri Lanka: 2001 census, Unicef

Causes of Disability in South Asia: Prevalence rates diverge significantly between census data and special surveys where the enumerators have been trained to collect specific kinds of data. Looking at the causes of disability, there appears to be a definite trend across Asia. The recently completed India report notes that in India, China and other Asia/Pacific countries are all in the midst of a disability transition of the causes, but that the pace of the transition in India is the most rapid. It states that between 1990 and 2020, there is predicted to be a halving of disability due to communicable diseases, a doubling of disability years due to injuries/accidents, and a more than 40 percent increase in the share of disability years due to non-communicable diseases.

Causes of Disability in South Asia

1. Non-communicable diseases
(73%--share rising)
2. Communicable diseases
(12%-- share falling)
3. Injuries/accidents
(14%-- share rising)
144 million Years Lost to Disability
  • Non-communicable diseases and traffic/industrial accidents are expected to continue to rise

An additional point of note is that around half the disability from non-communicable disease for South Asia is due to neuropsychiatric disorders (mainly mental illness and mental retardation), suggesting that 30 percent of total years lost to disability in India by 2020 will be due to these causes. This is of interest in that it appears to confirm that mental illness and retardation are significantly under-estimated in official statistics.

Socioeconomic Profile of Persons with Disability in South Asia

Disability is a rural phenomenon. In South Asian countries a high proportion of the population lives in rural areas. The prevalence rate in urban areas is actually higher, but the majority of PWD live in small rural communities. For example, in Pakistan, the overall disability rate per 1000 population is 25.4 for the country as a whole, 25.2 in rural areas and 25.9 in urban areas. However, if looked at in terms of numbers, PWD are almost double in rural areas – 66 percent in rural areas compared to 34 percent in urban areas. This implies that services for prevention, detection and management of disabilities must be community-based, instead of the costly large urban-based institutional model of service delivery that dominates at present.

Percent of People with Disability in Rural and Urban Areas

Afghanistan / Bangladesh / India / Pakistan
Rural / 70 / 60 / 66
Urban / 30 / 40 / 34

Males are consistently reported to have higher rates of disability, especially after adolescence. However, little information is available as to the reasons for higher prevalence. This deserves examination as it could reveal an under-reporting problem, or worse, females with disabilities may die younger through neglect.

Disability Prevalence by Gender

Afghanistan / Bangladesh / India / Pakistan
Male / 59 / 54 / 58 / 58
Female / 41 / 46 / 42 / 42

Prevalence of disability increases significantly in the population age 60 and above. The age group from 0-9 contains the most people with disabilities, but as a proportion of an age group, people over 60 have a higher incidence of disability. In Afghanistan, India and Pakistan, there is a larger increase in disability in the 4-9 year old age group, which then stabilizes until age 60. In Pakistan, 91 percent of people over 70 are reported to have a disability. The spike at three to four years old could reflect an earlydetection problem in infants and toddlers, but makes a case for early intervention and screening.

Education profile of PWD: If an inclusive approach to poverty targeted, education, health and other programs is not taken, it will not be possible to reach the MDGs.[2] In education, there have been significant enrolment gains over the last few years in most South Asian countries, yet the number of children with disabilities (CWD) attending school remains low. Children with a disability are less likely to attend school than those without:

In India, almost three quarters of those with severe disabilities are illiterate, and even for those with mild disabilities, the illiteracy rate is around half.

In Afghanistan as a consequence of decades of turbulence, for people aged 7 and above, 60 percent of people received no education. But more than 70 percent of people with disabilities do not have access to education.

In the conflict areas of Sri Lanka, studies have indicated that 49 percent of CWD between 5-16 do not attend school, while enrolments of the general population of those ages is over 90 percent. Furthermore, while there is a primary school completion rate of 95 percent in Sri Lanka, more than 56 percent of children in school with a disability drop out.

In Pakistan, 28 percent of PDW are literate. In rural areas, only 20 percent are literate compared to 42 percent in urban areas. Only 2 percent of females with disabilities in rural areas are literate.

In Bangladesh, a 2002 study[3] found that only 11 percent of CWD had received any form of education.

The same study estimates that 60 percent of out-of-school disabled children could attend with little or no assistance, and a further 20 percent could attend and thrive with some assistance to teachers and parents. Furthermore, there is anecdotal evidence that up to 30 percent of children in government schools have some form of mild and undetected disability. Teachers have little or no training or ability to diagnose simple visual, hearing or learning impairments. It is quite conceivable that a large percentage of drop outs are children with undetected disabilities. Thus, in countries where the majority of children are enrolled in schools, the last 10 percent may be comprised of children with mild to moderate disabilities who could benefit from education once the stigma and other barriers are removed. Therefore, to reach the education MDG of universal primary completion, it will be important to ensure inclusion of children with disabilities in the education system.