Disability data and the development agenda in Indonesia

oleh Ekawati Liu and Lyla Brown

At the heart of the Millennium Development Goals (MDGs) is poverty reduction and improved welfare for the world’s poorest people, measurable by social statistics. However, it is increasingly clear that progress in basic services aimed at malnutrition, education and income has bypassed persons with disabilities . As a result, world leaders have reaffirmed their commitment for the post-MDG era to leave no one behind , including people with disabilities.

Indonesia’s commitment to ensure that people with disabilities are included in the country’s development is longstanding. The government ratified the Convention on the Right of Persons with Disabilities (CRPD) in 2011. Prior to that, it enacted Law No. 4/1997 on Disabled People and set a one per cent disability quota for companies with more than 100 employees. In 2014, Indonesia passed a law to ensure more humane treatment of people with mental illness and intellectual disabilities, outlawing the common practice of shackling . As of 2015, Indonesia has 17 laws that cite the rights of people with disabilities.

Indonesia has approached disability inclusion as a cross-sectoral issue and enacted laws through the country’s medium national development plan. This approach could be the catalyst for including people with disabilities into the national agenda and post-MDG objectives. However, a sizeable challenge remains: ensuring accurate statistics and other data on disabilities. The lack of reliable data has serious implications for how Indonesia can tackle issues of disability in the post-MDG era.
A hazy statistical picture

Indonesia probably underestimated the number of persons with disabilities in its population. Official statistics from the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) estimated that only 1.4 per cent of Indonesia’s population has a disability, but this number would appear disproportionately low compared to the Association of Southeast Asian Nations (ASEAN) averages. For instance, Thailand and Vietnam estimate that 2.9 per cent and 7.8 per cent of their populations have a disability, respectively. According to the World Health Organization (WHO), the international average regarding disabilities is around 15 per cent of the global population or one billion people. Using Thailand’s calculations as a low-end proxy would double Indonesia’s population of persons with disabilities to over seven million, while using the WHO measure would suggest that Indonesia has up to 37 million citizens with a disability. Either way, Indonesia’s official figure is dubious.

Our research for the National Program for Community Empowerment (Program Nasional Pemberdayaan Mandiri, PNPM) Special Program on Disability demonstrated that key government agencies collect data on disability using different methods and diverse disability criteria. This uneven approach affects data validity and usability. Furthermore, in general terms, people with disabilities are often omitted as respondents in population surveys. This omission happens even in many developed countries because the range of responses (based on individual disability needs and experiences) is too complex for survey researchers to collate and subsequently analyse.

Further, during our fieldwork, the staff at social services, education, health and labor bureaus in Java and eastern Indonesia stressed that inaccurate and outdated data slows their efforts to reach citizens with disabilities and improve basic services accordingly. This data weakness has undermined Indonesia’s efforts to make progress towards the MDGs in a way that includes people with disabilities. It is important to note that although the data gathered by local government and disabled persons organisations are comparatively more accurate and reliable, the central government questions its validity to justify budget decisions and needs assessments. Often, existing disability policy at the regional level must adopt and use official national data as mandated by the central government, even when that data does not reflect the real number and condition of people with disabilities at the district level.
liu-brown-2A poster from a competition at a disability event in Yogyakarta - Courtesy of SIGAB and Temu Inklusi
People with disabilities slip through the gaps

If Indonesia cannot reliably count its citizens with disabilities, and let alone disaggregate that data, how can Indonesian policy makers set appropriate priorities regarding disability in national policy-making, such as those policies related to the MDGs? How can policy makers then act on those policies or measure the effects or progress of implementing such policies? These challenges become apparent when looking at the gaps around including people with disabilities in programs related to the MDGs for health and education.

The Government of Indonesia’s statistics suggest that nearly 25 per cent of people with disabilities live in extreme poverty. These individuals are more likely to experience poorer health outcomes and spend more on health care, yet they have limited access to adequate nutrition, clean water, reproductive health services, safe motherhood and general health information and services. In addition, misconceptions around disability and sexuality often lead to exclusion of people with disabilities from HIV information, prevention and testing.

Both development agencies and government increasingly recognise universal health access as an important component of improving quality of life. People with disabilities are often mentioned as a key subgroup that would benefit from such an approach given that they have historically been neglected. However, information about disability and health behaviour or health services use is scarce in Indonesia, which makes it very difficult to measure the specific experiences of people with disabilities in relation to the MDG targets.

Dibley and Budiharsana, in their article for this edition, point out that there have been improvements in child mortality figures. While these numbers are helpful for Indonesia as a whole to mark its progress towards the achievement of the MDGs, this data does not track disability. For example, it is unclear whether the marker for ‘child mortality’ includes children born with disabilities (which is then perhaps a compounding factor in their death). It is also unclear whether these figures include children who acquire disabilities at birth due to medical malpractice, or include children who acquire disabilities in early childhood due to illness or malnutrition. With regards to maternal health outcomes, there is, at present, no system that tracks mothers with disabilities. There is also no mechanism to track whether complications with pregnancy and childbirth are related to health factors faced by mothers with disabilities and/or the lack of appropriate disability-sensitive health services.

Similar gaps exist in measuring the extent to which children and youth with disabilities have had their educational rights met through the targets set for the MDG on education. According to the 2014 OECD report, Indonesia has shown a significant improvement in both education equity and performance as reflected in the Education For All strategy. Further, it has increased national spending by 20 per cent to meet the goal of universal primary education. Against the backdrop of decentralisation, the country has achieved 93 per cent literacy rate. However, the primary education attendance gap between children with disabilities and children without disabilities remains particularly wide at 60 per cent. To put this number into a perspective, a child with disability in Indonesia is seven times more likely to be absent from school.

Many children with disabilities do not attend school because of logistical (physical), financial and social barriers. What those precise barriers are and possible solutions remain little understood and under researched. Without further data on these barriers, it is impossible to develop realistic and practical strategies to ensure children with disabilities can go to school.
Considerations for the post-MDG era

In September 2012, the UN High Level Panel Committee and civil society, researchers, private sector, foundations and youth held an open dialogue to assess the progress of the MDGs and to devise a new ‘bold, visionary and courageous ’ action plan for tackling global poverty post-2015. Disability has a more noticeable presence in the post-2015 plans, but without accurate data about people with disabilities, questions still remain about the extent to which this new agenda will affect the disability sector in Indonesia.

Until now, people with disabilities have been excluded from many of the MDG-related development programs. The precise nature of that exclusion remains unclear given the hazy data that exists. Ensuring that people with disabilities have access to health and education services in Indonesia is complicated by complex administrative requirements, limited awareness, corruption, and physical and attitudinal barriers regarding disability. Resolving the finer details of these challenges will require better data determination in order to identify appropriate disability-sensitive development goals and implement appropriate mechanisms for achieving them.

Ekawati Liu ( is a disability inclusion specialist with the Asia Foundation, Indonesia.

Lyla Brown ( is an independent consultant who focuses on grant-making and organisational development for non-profit companies.