Conclusion

The recommendations formulated by the study were developed collaboratively with OPDs and leading disability data experts in Uganda, following a review of the evidence. They are representative of the opinions expressed by a range of actors, including those from OPDs, civil society groups, governmental entities and development partners.

A Uganda Disability Data Working Group should be instituted to drive improvements in disability data

To drive efforts aimed at strengthening Uganda’s disability data landscape, actors from across government and civil society should collaboratively establish a Uganda Disability Data Working Group. The mandate of the group could also include overseeing the recommendations highlighted in this report. Such a group would improve the coordination and quality of disability data, strengthen interaction between UBOS and OPDs, and grow the standing of the disability movement in relation to data issues.

UBOS should take the lead in setting up the Working Group, working closely with umbrella OPDs such as National Union of Disabled Persons of Ugandaand National Union of Women with Disabilities of Uganda. The Working Group would need to be representative of all disability stakeholders, including key government MDAs (such as the Ministry of Gender Labour & Social Development (MoGLSD), the National Council for Disabilities, the Ministry of Health, the Ministry of Education and Sports, the National Planning Authority etc.), national and local OPDs representing all persons with disabilities, and key development partners, as well as expert data organisations. Authority should lean towards OPDs, and local groups should have fair representation.

It is recommended that development partners and multilateral organisations which are already active in Uganda in the area of disability data allocate some resources towards financing the Working Group and allocate resources towards ensuring state-produced disability data is of satisfactory quality. The growing focus on measurement against the Sustainable Development Goals and the principle of ‘leave no one behind’ means that disability issues and needs are likely to come sharply into focus over the next decade, and this move could be harnessed to invite interest from development partners new to the area of disability data.^[1]

A Strategy for the Development of Disability Data should be developed, endorsed and implemented

A key priority for the Uganda Disability Data Working Group should be the production of a Strategy for the Development of Disability Data that lays out a vision and realistic action plan for the strengthening of Uganda’s disability data landscape. The formal document should be tied to other existing and relevant developmental strategies in Uganda. It should also be timebound and backed-up with adequate resourcing. The Working Group should publish its fully developed policies in the Strategy.

Evidence collected in this study indicates that the Working Group should address the following priority areas in the Strategy.

Creating a timely schedule of surveys to collect disability data that satisfies needs

The Strategy for the Development of Disability Data should rationalise a schedule for the more regular incorporation of disability indicators into UBOS’s routine data production. This should be done in close consultation with UBOS whether or not UBOS are members of the Uganda Disability Data Working Group.

The census is held decennially and current indications suggest that the Functional Disabilities Survey (FDS), or something similar, will be conducted every five years. If both patterns hold, between 2020 and 2030 the census will be conducted in 2024 and rounds of the FDS will be conducted in 2022 and 2027. It is likely that data collected in the years between censuses and the FDS will be collected as a part of other surveys.

Contributing to the standardisation of disability questions used in UBOS sources

The Strategy for the Development of Disability Data should articulate UBOS’s commitment to either applying the Washington Group Questions (WGQs) framework or to developing an alternative national framework. This should be done in close consultation with UBOS whether or not UBOS are members of Uganda Disability Data Working Group.

If the Working Group chooses to apply WGQs then they will need to make a concerted effort to sensitise the questions to the Ugandan context – for example, by ensuring that the functional disabilities covered by WGQs are representative of the conceptualisations of disability held by OPDs and persons with disabilities in Uganda, as well as ensuring that questions are asked in a way which does not encourage underreporting.

If the Working Group chooses to apply a national framework to enable domestic standardisation then they will need to carry out a mapping to international standards. It is generally more difficult to collect accurate data using complicated question frameworks. The WGQs were developed for pragmatic simplicity; any national framework would benefit from a similar approach. Any national framework should also be compliant with the Convention on the Rights of Persons with Disabilities.

A framework should be in place prior to the FDS (2022) and used again in the national census (2024).

Ensuring the increased utility of the levels of disaggregation in survey and census data

The Strategy for the Development of Disability Data should clarify the types and levels of disaggregation (how data is broken down into categories) to ensure that disability data in Uganda meets the needs of the disability movement and can more effectively support decision-making, while maintaining appropriate data responsibility and privacies. This should be done in close consultation with UBOS whether or not UBOS are members of the Uganda Disability Data Working Group.

One area of disaggregation which interviewees suggested should be improved is the categories of disability captured in the data, with specific attention being paid to psychosocial disabilities, albinism, and the continued integration of little people. They also indicated that disaggregation by social protection and other social programmes was important. These problems can be solved by adjusting questionnaire frameworks in accordance with needs.^[2] The Working Group should consult to determine what data is needed by members of the disability movement and communicate this with UBOS.

Identifying opportunities to further disaggregate existing disability data that may have been overlooked

The Strategy for the Development of Disability Data should outline UBOS data collected after 2015 to be re-analysed by UBOS to achieve the highest possible levels of disaggregation for the data, such as detailed disaggregation by economic activity, gender, age, etc. This data should then be made widely available.

Improving the sharing and accessibility of disability data for both online and offline users

The Strategy for the Development of Disability Data should provide a plan for the application of mechanisms to facilitate easy access to all of UBOS’s disability data for all OPDs and persons with disabilities. This should be done in close consultation with UBOS whether or not UBOS are members of the Uganda Disability Data Working Group.

Examples of mechanisms include a disability data tab on UBOS’s website which contains up-to-date data displayed in user-friendly dashboards, and links to every source of disability data the agency has published. It is also important to ensure that information is available in paper formats through user-friendly mechanisms, and is free of charge. For example, UBOS could produce regular, multi-sectoral or thematic factsheets on disability (e.g. on school enrolment, healthcare access, political involvement, etc.) and distribute them via the National Council for Persons with Disabilities, National Union of Disabled Persons of Uganda and National Union of Women with Disabilities of Uganda, and through local facilities (e.g. schools, health facilities).

Creating an electronic disability database to be managed by the Ministry of Gender Labour & Social Development (MoGLSD) or Uganda Bureau of Statistics (UBOS)

The Strategy for the Development of Disability Data should provide a plan for a real time, cross-departmental, electronic disability database. The database should intersect with information from other Management Information Systems (MISs) relating to education, health, economy/employment, etc.

This would require the disability data sections of the Health MIS (HMIS) and the Education MIS (EMIS) to be strengthened, standardised and developed further, with a view to them feeding into the new disability database. A separate, concise yet detailed disability module should be added to HMIS and EMIS tools to ensure more comprehensive disability data is collected in these systems. Thorough rationalisation of modules content is strongly encouraged. The same should be done for any MISs the Uganda Disability Data Working Group recommends should feed into the disability database.

The database should not contain personal data on all parts of people’s lives. For instance, even in relation to health a disability database should not have access to a person’s complete medical record. The database should be adequately anonymised and made open access upon request, with data made available in user-friendly dashboards. Paper reports should also be made openly accessible and widely available.

The MoGLSD should preside over the establishment and on-going management of the electronic disability database. Therefore, creating the plan for the disability database should be done in close consultation with the MoGLSD whether or not the MoGLSD are members of the Working Group. This is in line with the Second National Development Plan 2015/16–2019/20 and the Social Development Sector Plan, and due to the fact that the MoGLSD is the government entity which oversees the protection and enhancement of persons with disabilities’ needs and interests. UBOS should assist the MoGLSD, and if the MoGLSD cannot establish the system then UBOS should take on the work. In either case, creating the plan for the disability database should also be done in close consultation with UBOS whether or not UBOS are members of the Working Group. The UBOS Act (1998) provides some precedence for both of these scenarios: “the Bureau shall render technical assistance in the establishment and utilization of central public registers which serve to perform administrative duties for the public sector, business and industry, and which can be used for statistical purposes”; and, UBOS should “collect routine administrative statistics”.

The National Identification and Registration Authority’s My Country, My Identity campaign (2014 and 2016) saw 14.8 million register for a national identity card, and was a part of still ongoing efforts to issue all Ugandans with a National Identity Number (NIN).^[3] If all Ugandan’s received a NIN and it was used as a common record in key MISs, interoperability between the disability database and the systems it extracts information from would be made much easier.^[4] Therefore, the Working Group should use the Strategy to advocate for NIN to be used as a common record standard for MISs.

Strengthening the capacities of local and small OPDs to support their collection of disability data

The Strategy for the Development of Disability Data should lay out a plan to increase the quality of subnational OPDs own administrative data systems.

This may include the creation of toolkits by the Uganda Disability Data Working Group to help OPDs establish, restructure, standardise, maintain or scale-up their administrative data systems. This should be conducted with a view to increasing OPDs own use of the administrative data that they collect. Focus should also be on building capacity for the production of disability data by other small, local level organisations, such as the MoGLSD’s district level community development officers.

Basic skills such as proper record keeping, report writing, and communication could act as a catalyst for understanding and appreciating disability data.

Strengthening the capacities of the members of the disability rights movement to support their use of disability data

The Strategy for the Development of Disability Data should lay out a plan to increase use of disability data by MDAs and OPDs. The focus should be on increasing overall ability to analyse and use data in policy and programmatic design and implementation, as well as in advocacy work and in holding mandated actors to account. MDAs and OPDs also need to know all the ways that major forms of disability data (e.g. UBOS sources and electronic disability databases) can be accessed. If possible, this should be tied to general capacity building programmes of relevant offices (e.g. on how to design policy).