Uganda’s disability journey: Progress and challenges

The International Classification of Functioning, Disability and Health (ICF) defines disability as a complex phenomenon, reflecting the interaction between features of a person's body and features of the society in which he or she lives (World Health Organization [WHO] 2002:2). Based on the ICF definition of disability, over a billion people worldwide and 19% of the Ugandan population are estimated to have some form of disability (Uganda Bureau of Statistics and ICF International 2012:27; World Health Organization & World Bank 2011:ix). The prevalence of disability is predicated to increase in the future due to ageing populations and an increase in chronic health conditions hence the need to urgently deal with global disability (World Health Organization & World Bank 2011:ix).


Introduction
The International Classification of Functioning, Disability and Health (ICF) defines disability as a complex phenomenon, reflecting the interaction between features of a person's body and features of the society in which he or she lives (World Health Organization [WHO] 2002:2). Based on the ICF definition of disability, over a billion people worldwide and 19% of the Ugandan population are estimated to have some form of disability (Uganda Bureau of Statistics and ICF International 2012:27;World Health Organization & World Bank 2011:ix). The prevalence of disability is predicated to increase in the future due to ageing populations and an increase in chronic health conditions hence the need to urgently deal with global disability (World Health Organization & World Bank 2011:ix).
Uganda has been praised as one of the champions in sub-Saharan Africa for advocating for the rights of persons with disabilities (Katsui & Kumpuvuori 2008;Lang & Murangira 2009:18-24), with their rights incorporated in the national legal framework. This includes the 1995 constitution which recognises the rights of persons with disabilities to attain full mental and physical potential as well as development of the 2006 National Policy on Disability. Several laws have been established in the national legal framework to advocate for the rights of people with disabilities (PWDs) as highlighted below: • The 1996 Children's Statute for early assessment of disabilities amongst children to achieve early treatment, rehabilitation and education. • The Parliamentary Elections Statute of 1996 established five positions in parliament of which one of them must be a woman, and recognised the use of sign language for the deaf in parliament (International Labour Organization [ILO]  . The UDHS is a population sample survey undertaken every four years for monitoring and impact evaluation of population, health, HIV and/or AIDS and nutrition programmes (Measure DHS 2014). The inclusion of disability question in the 2011 UDHS provides opportunities for good data collection and more regular reporting which makes benchmarking disability progress possible. This is important in improving disability data including attainment of consistency in its measurement.
Furthermore, it is essential for international comparison with other developing countries that also include these questions (Mitra 2013;World Bank 2009

Review of challenges in Uganda's disability journey
Despite Uganda's achievements in disability, there are several challenges to its disability journey. There are differing statistics on the prevalence of disability in Uganda mostly due to the use of different definitions of disability and improvement in data gathering methods (Tsitsi et al. 2011:6). This makes targeted disability interventions difficult (Lang & Murangira 2009:16). In addition, disability data is quite limited and mostly at the national level (Government of Uganda 2010:54; Lang & Murangira 2009:9). A lack of data, especially at the district and local levels, compounds the difficulties in planning and targeting of services for disability (Lang & Murangira 2009). Moreover, the limited existing data have not meaningfully influenced decisions to include disability in the national development process (Tsitsi et al. 2011). As highlighted by Mitra (2013), there is a need to revolutionise disability related data worldwide to attain consistent and reliable disability statistics, which would also be relevant to Uganda.
The national disability policy also indicates research as one of the interventions to improve the limited knowledge on aspects of persons with disabilities through collection of comprehensive information on persons with disabilities. This stipulates that disability data would be collected in national surveys and censuses and disability management information systems developed (Republic of Uganda 2006:21). However, research that focusses on disability is still quite limited (Norad 2012:19); this situation is compounded by the fact that national surveys and census -the proposed avenue for such data collection -may be delayed in some instances (Groce et al. 2013;Ninsiima 2013; Uganda Bureau of Statistics 2011). The national census survey is supposed to be undertaken every 10 years, the last of which was in 2002. This makes monitoring and targeting of disability related goals inefficient given the extensive time lag in such surveys and the rapid changes in living conditions of persons with disabilities in all domains of life and across lifespans (Hoogeveen 2005;Loeb, Eide & Mont 2008). In their initial report to the UNCRPD (2010), the Ugandan government acknowledged the lack of authentic statistics as a challenge. They stated that: [T]here are no readily available statistics desegregated by gender, disability and region to back up most of the efforts government has made towards the promotion of the rights of persons with disabilities. (p. 6) Collecting data on disability more frequently would enable progressive follow-up which would indicate changes in regard to inequities in access to health, education and employment and other domains of life compared to the general population. Nonetheless, analysis of data from census surveys is limited to disability prevalence unless commissioned researchers are contracted to undertake a more elaborate and extensive analysis on disability. There is a need to make collection of disability data and analysis of disability mainstreamed and routine in national reports including Uganda Bureau of Statics, similar to gender analysis.
Uganda's development policy is consistent with international policies where development programmes, such as the Millennium Development Goals (MDGs), exclude disability; for example, the National Development Plan 2010/11-2014/15 which succeeded PEAP does not specifically mention disability although disability organisations were consulted as part of the wider civil society consultations (Norad 2012:11). Consequently, the link between disability and development has not been highly prioritised in national development strategies despite evidence of the link between disability and poverty (Hoogeveen 2005;World Bank 2009:131). A Ugandan study by Lwanga-Ntale (2003) reported that 80% of PWDs living in long term poverty with limited access to education, health facilities, sustainable housing and employment. Similarly, a study by Groce et al. (2011) revealed that Ugandan households with PWDs were more likely to be poorer than similar households without disabled members. Therefore, the attainment of the MDGs especially education attainment and improvement of health outcomes may not be achieved if Uganda does not make disability a main concern in its development strategies including public health interventions ( In the health sector, the majority of health promotion campaigns and services, including national programmes seldom include accessible information like sign language, braille or audio format (Action on Disability and Development Commissioned Study 2005; United Nations Human Rights, World Health Organization and United Nations Programme on HIV/AIDS 2009:3). In some instances, health centres are not accessible to physically disabled people who face physical and attitudinal barriers in accessing care, such as antenatal services for women (Groce et al. 2013). This is further compounded by disability related stigma 1 and misconceptions by most health service providers (particularly for HIV related services) where persons with disabilities are presumed not to be sexually active ( Uganda's national policy on disability does not explicitly elaborate on how interventions relating to disability would be funded but does mention the fact that disability is multisectoral and hence the need of each sector to deal with disability in its area of mandate and focus (Republic of Uganda 2006). This makes commitment to disability interventions difficult, leading to lack of coordination between the different ministries concerning disability (Lang & Murangira 2009;Republic of Uganda 2006). Consequently, care and support of persons with disabilities in Uganda is still poor and this has been made worse by the lack of a national social assistance programme specifically for people with disabilities (Chireshe et al. 2010). However, similar to gender equity in health and education systems, funds need to be earmarked to disability for interventions to effectively address inequities due to disability. This would require disability specific budgeting across government departments (Payne 2009 need to demand disability disaggregated indicators in all sectors of government planning and reporting as disability is a cross-cutting issue. Despite Uganda's active history of disability activism and legislation specific to disability, societal and cultural negative attitudes and perceptions have been indicated as the greatest obstacle to disability inclusion. Such negative attitudes have been reported to prevent genuine consideration of disability within the national development agenda including the PRSPs (Tsitsi et al. 2011). Although Uganda has excelled in developing a comprehensive body of legislation that uphold disability rights particularly through affirmative action, many of these have not been implemented. The government's commitment to disability compared to other cross-cutting issues like gender remains low in terms of implementation. A report by Norad revealed that implementation of a majority of targeted and mainstreamed interventions categorised persons with severe cognitive or intellectual disabilities as 'all disabilities', marginalising these individuals within most projects (Norad 2012).

Comparison with global trends
Uganda joined the global community in rallying together to ensure the improvement of conditions for disadvantaged people in the world through the MDGs. However, none of the eight MDGs, MDG targets indicators or millennium declaration mention people with disabilities despite the fact that persons with disabilities lack equitable access to resources including health, education, work and social and legal systems globally (Chataika et al. 2011

Conclusion
Uganda has excelled in its commitment to disability rights by establishing a comprehensive body of legislation, policies and socio-economic programmes consistent with social justice. The evidence presented in this article highlights there continues to be a gap between laws, policies and practice. The implementation gap is about negative cultural attitudes towards disability, poor funding, inadequate training in inclusive education and limited access to accessible information and assistive mobility devices. The implementation gap makes monitoring progress difficult and discourages prioritising resource allocation to disability (Lang & Murangira 2009; Uganda Bureau of Statistics 2011). Most importantly, there is a lack of benchmarking of policies and indicators of equity in access to health, education, and social protection for persons with disabilities. As Uganda strives towards progressive realisation of rights of persons with disabilities the following recommendations are likely to make a difference in transforming legal and policy commitments into measures of equity: • Community advocacy to change societal and cultural negative attitudes towards PWDs. • Training more educators in inclusive education to meet the increased demand in schools due to universal education • Provision of accessible information and assistive devices to enhance mobility, especially in health and education programmes to ensure social inclusion of PWDs. • Earmarking of disability funds in all government departments to ensure that disability as a crosscutting issue is prioritised in all government programmes. • Routine collection of systematic data on disability, mainstreaming of disability in all government reports and extensive analysis of disability data, similar to gender analysis.
Better data collection across all government departments on disability enables performance and policies to be assessed over time.