Governance of disability inclusion and data in Uganda

Legislative and institutional framework for disability governance in Uganda

Uganda’s legislative and institutional framework takes into consideration the need to protect and enhance the rights and inclusion of persons with disabilities. Important policy tools for persons with disabilities include the Constitution of the Republic of Uganda (1995) and the Persons with Disability Act (2019). Uganda ratified both the convention and protocol of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2008. ^[1] The major institutions involved in disability governance are the Ministry of Gender, Labour and Social Development (MoGLSD), particularly its Disability Desk, and the National Council for Persons with Disabilities (NCD). Details of other legislation and institutions identified by interviewees as important for persons with disabilities are presented in the Annex, Table A1 .

Government plans for disability inclusion in Uganda

There are various government plans which also seek to address the need to protect and enhance the rights and inclusion of persons with disabilities. The National Planning Authority’s (NPA) Second National Development Plan 2015/16–2019/20 (NDPII) ^[2] and the MoGLSD’s Social Development Sector Plan 2015/16–2019/20 (SDSP) ^[3] illustrate this. For example, the NDPII commits to design, implement and follow up the integration of human rights and disability responsive policies, while the SDSP commits to enhancing community-based rehabilitation for children with disabilities and to improving access to disability grants for persons with disabilities. ^[4]

Design and implementation of government plans, policy and strategy for disability inclusion in Uganda

Despite the inclusion of disability within policy tools, there are gaps in policies and plans as the solutions they present are limited in their scope and ambition. For example, interviewees and workshop participants highlighted that, despite the MoGLSD recognising the need for rehabilitation in the SDSP, it set a target of reaching just 600 children per year between 2015 and 2020. Such policy tools can be characterised as incrementalistic, because in spite of the recognition that there is large-scale need, the solutions proposed are comparatively small. In addition, disability-orientated policies and plans often omit important practical details. For instance, the MoGLSD did not have the funds in place to finance its policy to increase the number of claimants accessing disability grants. ^[5]

Effective implementation of the plans, policies and strategies related to persons with disabilities has been a challenge in Uganda. In some cases, a policy commitment is not realised because corresponding action fails to materialise or is not sufficient. For example, according to interviewees, very little action was taken by the MoGLSD to realise its commitment to increase the number of claimants accessing disability grants. ^[6] While the NDPII’s commitment to “design, implement and follow up the integration of human rights and disability responsive policies” resulted in the development of the Persons with Disability Act (2019), ^[7] interviewees reported concerns about this piece of legislation. For example, the criminal penalties for non-compliance with serious elements of the act are lenient and any mention of disability data is entirely omitted. ^[8]

The ministries, departments, and agencies (MDAs) designing and implementing Uganda’s disability-relevant policies and plans are under resourced. According to interviewees, the MoGLSD receives just 1% of the central government’s annual budget, making it the least funded of all government ministries. The limited funds constrain the implementation of fundamental services. For example, between FY2016/17 and 2020/21 the MoGLSD was able to allocate just UGX 1,500,000 (approx. US$400) per annuum towards its programme to rehabilitate children with disabilities. This equates to UGX 2,500 (approx. US$0.70) per child per year. ^[9] Limited resources also often prevent the MoGLSD’s Coordination Committee on Disability from fully functioning. Interviewees reported the budget allocated to the NCD in FY2019/20 was UGX 500 million (approx. US$135,000 despite requests for UGX 4 billion (approx. US$1,085,000). This resource gap placed significant financial pressure on the NCD and has constrained the size of its research department, which consists of only two people. The scarcity of resources faced by key MDAs prohibit activities beyond the operation of their basic functions. The salaries of staff and social protection payments consume the majority of budgets, leaving limited funds to support activities such as data collection, which subsequently gets deprioritised. As a consequence, the evidence base that MDAs and others have to work with receives minimal investment.

Legislative and institutional framework for disability data governance in Uganda

Key legislation related to disability data consists of Article 31 of the CRPD and key institutions include the Uganda Bureau of Statistics (UBOS), the MoGLSD and the NCD. However, Uganda lacks a robust, coherent and integrated approach towards legislation on disability data and lacks comprehensive and authoritative plans to guide its development. The MoGLSD, NPA and UBOS have published separate uncoordinated documents, demonstrating that no individual ministry, department or agency has taken on the responsibility of being the primary lead on this issue.

While there are no domestic laws that explicitly articulate a mandate by the government of Uganda to collect data on disability, the Uganda Bureau of Statistics Act (1998) does stipulate that UBOS must collect all statistics needed by the government. ^[10] UBOS’s Department of Population and Social Statistics specifies disability as one of the issues it is responsible for. ^[11] As a signatory to the CRPD, Uganda has committed to an international agreement to produce, share and use disability data. However, this commitment is not legally binding within Uganda. Article 31 of the CRPD outlines that: “States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”; “the information collected in accordance with this article shall be disaggregated, as appropriate”; and “States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility”. ^[12]

Government policy for developing the disability data landscape in Uganda

Several institutions have laid out policies designed to develop Uganda’s ‘disability data landscape’ (that is, its practices of governing, producing, storing, sharing, and using disability data). However, many of these objectives have not been met. For example, in several policies the MoGLSD has outlined its intention in several policies to build a web-enabled disability Management Information System, including in the National Disability Guidelines (2012), the SDSP and the National Action Plan for Children with Disabilities (2016/17-2020/21). ^[13] However, at the time of writing (September 2020) the Disability Management Information System is yet to materialise, as has further details on planned financing, software, personnel or deployment.

There have also been commitments in policy towards use of data. For example, in the National Disability-Inclusive Planning Guidelines for Uganda (2017), the National Planning Authority (NPA) committed to promoting “evidence-based planning to ensure that planners use context-specific, verifiable data or newly emerging evidence for decision-making”. ^[14] However, according to interviewees, government institutions rarely undertake evidenced-informed planning when it comes to designing or managing services for persons with disabilities, citing the lack of data as the primary reason.

Key institutions contributing to the disability data landscape in Uganda

Uganda Bureau of Statistics (UBOS)

UBOS is Uganda’s national statistical office, established in 1998 by the Uganda Bureau of Statistics Act. ^[15] The NPA’s National Disability-Inclusive Planning Guidelines for Uganda states that UBOS should “include disability questions in periodic surveys, commission separate disability-inclusion surveys where necessary; and compile progress on disability-specific indicators across the board”. It also commits UBOS to, “supporting MDAs and LGs [local governments] with data and reports on disability, as well as “developing a framework and guidelines to support MDAs and LGs to collect, analyse, disaggregate and disseminate data on disability”. ^[16]

In the past few years, UBOS has commissioned a survey specifically on disability, namely the Functional Difficulties Survey (2017) (FDS), a first of its kind in Uganda. ^[17] According to interviewees, the FDS had major flaws. In particular, “the survey did not provide much detail on what persons with disabilities go through, the causes of disability, or the specific geographic dispersions of persons with disabilities”. UBOS is due to follow up on the 2017 FDS in 2022. ^[18] UBOS has also included disability questions in periodic surveys, as outlined in Chapter 3, Table 1 .

Interviewees reported that UBOS has not supported MDAs and local governments with their production of disability data or developed a framework or guidelines to grow the quality of disability data. The National Statistics Indicator Framework which UBOS published in 2016 contained only a few references to disability data. ^[19] However, UBOS does collaborate with some OPDs to increase the utility of the disability data it produces. For instance, UBOS worked with the National Union of Women with Disability of Uganda and the National Union of Persons with Disabilities of Uganda to prepare for the National Population and Housing Census (2014).

To continue its progress towards compliance with the National Disability-Inclusive Planning Guidelines for Uganda and Article 31 of the CRPD, UBOS will need to overcome some challenges. This includes a shortage of funds and resources. In some years, just a small amount of activities absorbs most of its budget. For example, the majority of funding from FY2013/14 to FY2015/16 was allocated to the 2014 national census. Therefore, UBOS often relies on financial support from development partners (see Annex, Table A3 ) and generates extra revenue from consultancy services. ^[20] Other challenges include the lack of a coherent and broadly agreed plan on the development of disability data, high staff turn-over among skilled positions, limited experience of collecting inclusive statistics and limited institutional knowledge about the needs and interests of persons with disabilities.

The National Council for Persons with Disabilities (NCD)

The NCD is mandated by the Persons with Disabilities Act (2019), ^[21] which replaced the National Council for Disabilities Act (2003). ^[22] The NCD has one data-specific function as per the current act (2019), namely, to “carry out or commission surveys, inquiries or investigations on matters relating to violation of rights of persons with disabilities under this Act or non-compliance with this Act by Government, bodies corporate or private persons”. The data-specific function given in the Persons with Disabilities Act (2019) is an extension of the data-specific function in the National Council for Disabilities Act (2003).

As yet (September 2020), the NCD has not conducted or commissioned any surveys. A significant reason for this has been its lack of financial and technical capacity. As basic running costs take up most of its budget, the NCD has to prioritise the activities it undertakes meaning that data-specific activities are not feasible.

The NCD is not mandated to collect a wide array of disability data, but it is mandated to collect data on violations of disability rights. The extension of the NCD’s data-specific mandate to include the collection of other key disability data would enrich their annual State of Disability Report and Uganda’s disability data landscape more broadly. The budgetary shortfalls it already experiences mean it is likely any extension would initially have to be supported financially by a development partner.

Ministry of Gender, Labour and Social Development (MoGLSD): Department of Employment Services (ESD)

The Department of Employment Services (ESD) of the MoGLSD collects and disseminates “labour statistics” and “labour market information”. ^[23] Interviewees reported that they expect the ESD to collect such statistics about person with disabilities too. Currently, the ESD does not do this. However, the expectation that the ESD collects labour statistics related to disability may be misplaced, as there appear to be no policies that outline this responsibility. Instead, it appears that the primary focus of ESD has been, and remains, on Ugandan citizens employed abroad. There are no policies or plans which suggest this will change.

Interactions between Uganda Bureau of Statistics (UBOS) and organisations of persons with disabilities (OPDs)

Uganda’s disability rights movement, formed of OPDs and their allies in government and beyond, has a critical role to play in strengthening Uganda’s legislative, institutional and policy framework for disability inclusion, as well as their implementation, and the achievement of Uganda’s disability commitments. In recent years UBOS has demonstrated a willingness to engage with OPDs. There has now been a range of interactions on issues related to disability data and UBOS regularly engage stakeholders when preparing the questionnaire for censuses and some surveys. Interviewees reported that UBOS usually approach OPDs in one-off exchanges about a specific source, as opposed to working together on a more continuous basis. The OPDs that UBOS engages with tend to be well-established and national in scope. ^[24] These interactions therefore tend to reflect the needs and interests of the ODP involved, rather than the broader disability rights movement – which is composed of national as well as smaller, local ODPs, and, according to multiple interviewees, is fractured in its interests.

Despite the fact that many OPDs recognise similar problems with UBOS’s disability data – such as its perceived inaccuracy and poor disaggregation (the smaller categories data is broken down into) – there have, to date, been no coordinated attempts by OPDs to collectively address these issues nor any efforts to engage with UBOS as a group. The absence of collective action, where OPDs systematically work with UBOS in a long-term relationship, greatly reduces the scope of future progress. The uncoordinated nature of the existing interactions may be rooted in contradictory beliefs about who should be driving improvements. UBOS believe that demand should drive developments. For example, one interviewee stated, “as a bureau we are demand driven. If no one comes to us to ask, we will not do any collection or analysis focusing on disability for example. They [OPDs] need to press the government”. Conversely, many OPDs believe that the development of UBOS’s disability data should be led by supply. For instance, one interviewee argued that, “the will by the government to produce credible disability statistics shouldn’t be dependent just on demand. It should be done as a public good”.

Lesson from Uganda’s other social movements

To support the disability movement’s engagement on issues of disability data, lessons can be learned from Uganda’s other social movements, such as gender mainstreaming, which has a strong track record in closing critical data gaps. ^[25] One interviewee commented that, “the disability movement is relatively newer compared say to the women’s movement which is older, more entrenched and has more experience in organising and advocacy, greater intellectual muscle, international intrenchment and funding”. They also added, “there are five regional representatives for persons with disabilities in parliament, but their impact is hard to be seen. In comparison, the women’s caucus in parliament is quite robust. They have the Uganda Women Parliamentarians Association, which is quite vocal in advocating for women’s rights and issues, including fighting for budget allocations to gender issues”. ^[26]

The success of Uganda’s other social movements can be seen in the NDPII and SDSP. For example, gender, HIV/AIDS, environment, nutrition, climate change, human rights, social protection, and child welfare are all included in the ‘Integrating Key Cross-Cutting Issues into Programmes and Projects’ section of NDPII’s Development Strategies; however, persons with disabilities are not mentioned. One interviewee explained, “discrimination is illegal – the equity principle of most of our laws infer that you need data and therefore must collect it on all segments of the society. The government, for example, introduced gender equity certification but there’s nothing like that for disability data”. Such discrepancies highlight that the disability movement has not yet leveraged the same political advancement as some other social movements. They also highlight that the government is potentially receptive to the advocacy of social movements.