Introduction

In Uganda, an estimated 12% of the population have a disability^[1] yet 22% of unemployed Ugandans have a disability.^[2] Research indicates that persons with disabilities have less opportunity for employment, particularly as the economy is dominated by subsistence farming.^[3] This is an important factor in understanding the high levels of poverty among people with disabilities: the 2009/10 National Household Survey found that poverty rates in households where there was a person with a disability were 30% higher.^[4] The coronavirus containment measures of 2020 dramatically disrupted the functioning of both formal and informal employment, and so the current unemployment and poverty rates among persons with disabilities are likely to be higher than shown by the most recent data.

To reduce unemployment, alleviate poverty and grow economic inclusion among persons with disabilities, there needs to be disability inclusive programmes, policies and services. This includes livelihood programmes to generate more economic opportunities, inclusive education programmes to prepare persons with disabilities for future employment, and inclusive health policies to improve the overall health, and therefore productivity and wellbeing of persons with disabilities.^[5]

A strong evidence base, made up of quality data and information on persons with disabilities, is critical for informing the design and implementation of disability inclusive programmes, policies and services. Referred to in this report as ‘disability data’ this evidence base is formed of disability-relevant data from surveys, censuses, administrative systems, and studies, from both government and non-government.

How stakeholders can use disability data to improve disability inclusion

Disability data is required by a wide range of stakeholders working to further disability inclusion in Uganda.

• Government at all levels need accurate data on how many people have disabilities, the nature of their disabilities and where they are located to inform decisions, planning and monitoring of policies and services that enable economic inclusion and employment.
• Civil society and organisations of persons with disabilities (OPDs) need the above as well as accurate data on inclusion performance to monitor progress against commitments, hold government and donors accountable, build political will and raise the profile of disability inclusion, and inform the targeting of their own programmes.
• Businesses need accurate data on the expertise and needs of persons with disabilities to develop opportunities for inclusive employment and target people with disabilities.
• Persons with disabilities need accurate data and information on the opportunities available to them to access government services, find employment and further their inclusion.

To access jobs, livelihoods, and achieve economic inclusion, persons with disabilities need to also have been included in basic entitlements such as education, health services and housing. To enable economic inclusion, stakeholders therefore require a broad range of data. For example: to equitably allocate disability grants, ministries need to know how many persons with disabilities live in each district; and to effectively target their community-based rehabilitation programmes, ministries need to know the nature of disability, location, age and gender of service-users.

To support the needs of different stakeholders and strengthen the enabling environment for disability inclusion, there needs to be a coordinated and sustainable ‘disability data landscape’. The disability data landscape can be understood as the various practices of governing, producing, storing, sharing, and using data on persons with disabilities.

In many countries, including Uganda, there are problems with the disability data landscape. The data may not exist or may not be accessible. It may be of poor quality (e.g. inaccurate or out of data). There may be limited practices of using data and limited capacity to support this. These factors constrain progress towards disability inclusion and the employment of persons with disabilities.

OPDs, civil society and the government have an important role to play in strengthening the disability data landscape, but, typically, not enough is known about the disability data landscape for them to make effective change. A common understanding of the data landscape, including the range of data sources, standards, technologies and infrastructures, policies and acts, and the organisations that steward, contribute to, and use them,^[6] is an important baseline from which to design improvements.

Providing the evidence base for action to strengthen the disability data landscape in Uganda

This report seeks to provide an evidence basis for a shared understanding of the disability data landscape in Uganda by presenting findings from an in-depth study. The study identified disability and data-relevant legislation, institutions and policies, as well as the gaps in them and in their implementation. It identified the data captured on disability, the process of data production and other aspects of the data’s metadata. It assessed the data’s quality, in turn addressing factors such as accuracy, timeliness, and disaggregation (how it was broken down), and looked at its accessibility. The study also analysed the dynamics around the use of data in the design, implementation and monitoring of policies, services and programmes related to persons with disabilities.

Developed in consultation with Uganda’s disability rights movement, this report highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion. The report provides an up-to-date and detailed overview of:

• Governance of disability inclusion and disability data
• Sources of disability data from government and non-government actors
• Challenges in the production, accessibility and use of disability statistics
• Recommendations on how to improve data on disability in Uganda.

Methodology

The study pioneered a new methodology, developed according to the United Nations Convention on the Rights of People with Disabilities principles of inclusion. It adopted a mixed-methods approach that aimed to be inclusive of the perspectives of persons with disabilities at every stage. Development Initiatives shared research planning documents and initial findings for consultation with OPDs and disability experts in Uganda. The study’s analysis and recommendations are based on desk research, key informant interviews,^[7] and a consultation workshop with OPDs and experts on both disability and data in Uganda.^[8]