|
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] 2004:6; Republic of Uganda 2006:12).
• The 1997 Local Government Act that established representation of PWDs at all local government levels for both males and females.
• The 1997 Uganda Communication Act for the development of techniques and technologies to ensure communication services for PWDs and the 1997 Universal Primary Education Act which demands families to give CWDs priority at enrolment.
• The 1998 UNISE Act, for the establishment of the Uganda National Institute of Education (UNISE) for special teacher training for children with disabilities (CWDs).
• Others include the special allocation of university scholarships for persons with disabilities through affirmative action and the right to assets including land (Hanass-Hancock & Nixon 2009; Katsui & Kumpuvuori 2008; Lang & Murangira 2009:17; Republic of Uganda 2006:11–12). Internationally, Uganda is a signatory to several international pieces of legislation advocating for the rights of persons with disabilities including the 2008 United Nations Convention on the Rights of Persons with Disabilities and 1983 International Labour Organisation Convention on Vocational Rehabilitation and Employment of disabled persons (ILO 2004:8; Lang & Murangira 2009:5).
Progress to date
The practical enactment of the aforementioned laws include the election of PWDs at all levels of political life from the village to parliament, making Uganda one of the countries with the highest numbers of elected representatives with a disability in the world (World Health Organization & World Bank 2011:171). Also, UNISE, an institute of higher learning with specialised programmes to address professional teacher development was established in 1991 by the government of Uganda (ILO 2004:10; Kyambogo University 2014). UNISE trains teachers and community workers to support and work with PWDs including children with disabilities (ILO 2004:10; Kyambogo University 2014).Uganda’s commitment to providing education to children with disabilities dates back to a modest start in 1983 when a one-staff section for special needs education was established in the Ministry of Education. In 1987 the government established the ‘Kajubi Commission’ to review the entire education sector, and its report of 1989 emphasised the need for government to prioritise special needs education a recommendation which was adopted in the 1992 government White Paper on Education. According to the Ministry of Education and Sports, in 2008, there were 183 537 learners with disability in primary schools countrywide, and 11 145 learners in secondary schools countrywide (Foundation for Human Rights Initiative 2009). Uganda’s initial report to the Committee on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD 2010) reports that: all government programs for promoting education – Universal Primary education (UPE), Universal Secondary Education (USE) and Business and Vocational Technical Training are all embedded with affirmative action for learners with disabilities. The Business, Technical, Vocational Education and Training (BTVET) Act, No. 12 of 2008, promotes equitable access to education and training for all disadvantaged groups, including disabled people. Uganda promotes both inclusive education and special needs education where it is needed, all the 21 000 schools in Uganda practice Inclusive Education by admitting learners with special Education needs. (p. 35) In addition, Uganda has a strong training focus on Community Based Rehabilitation (CBR) programmes, established in 1992 under the Ministry of Gender, Labour and Social Development with assistance from the Norwegian Association of the Disabled (NAD). CBR follows WHO strategy for involving PWDs in developing their communities through equal access to community resources including health, education, rehabilitation and employment, and ensure social inclusion of PWDs. A five year National CBR Strategic Plan 2002–2007 was developed to fully integrate PWDs into the community and ensure equal opportunities for PWDs. Therefore, PWDs and local communities have been empowered to manage disabilities, identify children with special needs and increase access to education facilities; for example, through the Alternative Basic Education for Karamoja (ABEK) programme (ILO 2004:9–10; Norwegian Agency for Development Cooperation [Norad] 2011:110). Through the CBR programme, 80% of the PWDs are helped within the community whilst the rest require specialist services. CBR programme uses a multisectoral approach and the main activities include capacity building, economic empowerment, increasing disability awareness, disability management and home based care (Claussen, Kandyomunda & Jareg 2005; Norad 2011:87). The disability movement in Uganda has been spearheaded by the National Union of Disabled Persons Uganda (NUDIPU), established in 1987. NUDIPU represents all disability groups in Uganda including women with an objective of advocating for equal opportunities and involvement of PWDs in policy development and implementation of programmes addressing disability. This is usually in collaboration with other stakeholders including government and NGOs (ILO 2004:12); for example, PWDs have been involved in the third phase of the Poverty Reduction Strategy Papers/Poverty Eradication Action Plan (PRSPs/PEAP) process which is important for inclusion of prodisability poverty alleviation strategies (Dube 2005:28; Norad 2012:33). Likewise, female-specific disability groups managed by women were established including the National Union of Women with Disabilities of Uganda (NUWODU) and the Disabled Women Network and Resource Organisation (DWNRO). The groups train women and advocate for economic empowerment of women with disabilities including access to micro-credit programmes (ILO 2004:12). NUDIPU has been internationally active within the East African region providing advice to disability groups in countries affected by war including Somalia, Sudan, Rwanda and the Democratic Republic of Congo (Lang & Murangira 2009:25). Comparable to other developing countries, Uganda lacks disability data for monitoring and evaluating disability interventions’ policy. The Uganda Demographic and Health Surveys (UDHS) funded by USAID has been used as an alternative avenue through which data on disability can be improved especially with the recent inclusion of the Washington Group’s Short Set of six questions on disability (Madans, Loeb & Altman 2011; Uganda Bureau of Statistics and ICF International 2012:7). 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). Uganda’s commitment to disability is also evidenced through the introduction of programmes targeted at improving socio-economic opportunities of vulnerable populations including PWDs. This includes the special disability grant to support socio-economic development and employment opportunities for PWDs in districts estimated at 12 000 USD per annum (Norad 2012). The Social Assistance Grants for Empowerment (SAGE), a pilot social cash transfer scheme is another similar programme under the Ugandan government’s Expanding Social Protection Programs (ESPP). The programme addresses chronic poverty and aims at improving access to health care, education and other key services for chronically poor people. The evaluation of SAGE revealed that eligible households had a higher proportion of people defined as chronically ill or disabled than noneligible households, with 33% of eligible households containing a chronically ill or disabled member (Oxford Policy Management, Economic Policy Research Centre & Neema 2013:14–15).
Review of challenges in Uganda’s disability journey
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; Republic of Uganda 2006; United Nations 2011; World Health Organization & World Bank 2011; Yousafzai et al. 2005). Such barriers lead to poor economic participation and worse educational outcomes for PWDs, making them more vulnerable (Lang & Murangira 2009; Mitra & Sambamoorthi 2013; United Nations 2011; World Bank 2009; World Health Organization & World Bank 2011). The exclusion of persons with disabilities in MDGs represent a lost opportunity to tackle the social, educational, health and economic problems faced by marginalised persons with disabilities. There is a growing opinion that the MDGs will not be realised unless persons with disabilities are included (United Nations 2011). As a result, there is a push to seek disaggregated disability data for each of the post-2015 MDGs (United Nations 2011, 2013). Such reports will present an opportunity to monitor the progressive realisation of the rights of PWDs globally.Similar to Uganda, there is evidence of data related challenges globally (Mitra 2013; World Health Organization & World Bank 2011): ‘Appropriate statistical and research data needs to be collected at both country and international levels to assist the CRPD formulate and implement policies to achieve internationally agreed development goals’. This calls for improvement of data at both the national and international level in order to capture all aspects of disability including contextual factors to give a complete picture of disability and functioning. It is advised to disaggregate data further by gender, age, income or occupation to uncover trends, patterns and other information about ‘subgroups’ of people experiencing disability. Furthermore, setting international standards on data and using standardised questions can improve harmonisation and ensure comparison with other countries (Mitra 2013; World Health Organization & World Bank 2011). Therefore, data collected at the national level need to be relevant and comparable at the global level, possibly by basing design on international standards, for example, the International Classification of Functioning, Disability and Health or ICF (Mitra 2013; World Health Organization & World Bank 2011).
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; Republic of Uganda 2006; United Nations 2011; World Health Organization & World Bank 2011; Yousafzai et al. 2005). Such barriers lead to poor economic participation and worse educational outcomes for PWDs, making them more vulnerable (Lang & Murangira 2009; Mitra & Sambamoorthi 2013; United Nations 2011; World Bank 2009; World Health Organization & World Bank 2011). The exclusion of persons with disabilities in MDGs represent a lost opportunity to tackle the social, educational, health and economic problems faced by marginalised persons with disabilities. There is a growing opinion that the MDGs will not be realised unless persons with disabilities are included (United Nations 2011). As a result, there is a push to seek disaggregated disability data for each of the post-2015 MDGs (United Nations 2011, 2013). Such reports will present an opportunity to monitor the progressive realisation of the rights of PWDs globally.Similar to Uganda, there is evidence of data related challenges globally (Mitra 2013; World Health Organization & World Bank 2011): ‘Appropriate statistical and research data needs to be collected at both country and international levels to assist the CRPD formulate and implement policies to achieve internationally agreed development goals’. This calls for improvement of data at both the national and international level in order to capture all aspects of disability including contextual factors to give a complete picture of disability and functioning. It is advised to disaggregate data further by gender, age, income or occupation to uncover trends, patterns and other information about ‘subgroups’ of people experiencing disability. Furthermore, setting international standards on data and using standardised questions can improve harmonisation and ensure comparison with other countries (Mitra 2013; World Health Organization & World Bank 2011). Therefore, data collected at the national level need to be relevant and comparable at the global level, possibly by basing design on international standards, for example, the International Classification of Functioning, Disability and Health or ICF (Mitra 2013; World Health Organization & World Bank 2011).
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.
We are grateful to Ms Jenny Watts and reviewers for comments on earlier draft.
Competing interests
The authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article.
Authors’ contributions
J.A-O. (Deakin University) drafted the initial manuscript, H.M. (University of Melbourne) reviewed the draft and both authors responded to reviewers comments.
Action on Disability and Development Commissioned Study, 2005, Challenges faced by people with disabilities (PWDs) in utilizing HIV/AIDS communication and related health services in Uganda
, viewed 13 November 2012, from http://www.africacampaign.info/uploads/media/add_reporton_hivaidsand_disability_01.pdfAmerican Speech-Language-Hearing Association, 2014, Augmentative and alternative communication (AAC)
, viewed 11 April 2014, from http://www.asha.org/public/speech/disorders/AAC/#what_is Chataika, T., Mulumba, M., Gubela, M. & MacLachlan, M., 2011, Did what? Research project in brief: A-PODD in Uganda, African policy on disability and development. Dublin, Ireland
, viewed 04 June 2014, from http://www.academia.edu/4342193/Did_What_The_African_Policy_on_Disability_and_Development_A-PODD_Project_in_Uganda_Policy_Brief Chireshe, R., Rutondoki, E.N. & Ojwang, P., 2010, ‘Perceptions of the availability and effectiveness of HIV/AIDS awareness and intervention programmes by people with disabilities in Uganda’, SAHARA Journal of Social Aspects of HIV/AIDS Research Alliance
7(4), 17–23. http://dx.doi.org/10.1080/17290376.2010.9724973 Claussen, J., Kandyomunda, B. & Jareg, P., 2005, Evaluation of the community based rehabilitation programme in Uganda, Norwegian Association of the Disabled
, viewed 12 June 2014, from http://www.norad.no/en/tools-and-publications/publications/publication?key=117376 Daumerie, B. & Madsen, L.E., 2010, ‘The effects of a very young age structure in Uganda: A country case study’, in The shape of things to come series, Population Action International, Washington DC
, viewed 14 November 2013, from http://populationaction.org/wp-content/uploads/2011/12/SOTC_Uganda_CCS.pdf Dube, K.A., 2005, Participation of disabled people in the PRSP/PEAP process in Uganda, Samaita consultancy and programme design
, viewed 14 November 2013, from http://r4d.dfid.gov.uk/PDF/Outputs/Disability/PolicyProject_uganda_prsp.pdf Foundation for Human Rights Initiative, 2009, Disability is not inability repor
t, viewed 12 November 2013, from http://www.afri-can.org/Scanning%20Project/Education/KIN%20PARTNERS/LIFE-LONG%20LEARNING/Disability%20Is%20Not%20Inability%20by%20FHRI.pdf Government of Uganda, 2010, Uganda’s initial status report 2010: United Nations Convention on the Rights of Persons with Disabilities, Government of Uganda, Kampala, Uganda. Groce, N., Kett, M., Lang, R. & Trani, J.-F., 2011, ‘Disability and poverty: The need for a more nuanced understanding of implications for development policy and practice’, Third World Quarterly
32(8), 1493–1513. http://dx.doi.org/10.1080/01436597.2011.604520 Groce, N.E., Rohleder, P., Eide, A.H., MacLachlan, M., Mall, S. & Swartz, L., 2013, ‘HIV issues and people with disabilities: A review and agenda for research’, Social Science & Medicine
77, 31–40. http://dx.doi.org/10.1016/j.socscimed.2012.10.024 Hanass-Hancock, J. & Nixon, S., 2009, ‘The fields of HIV and disability: Past, present and future’, Journal of the International AIDS Society
12(1), 28. http://dx.doi.org/10.1186/1758-2652-12-28 Hoogeveen, J.G., 2005, ‘Measuring welfare for small but vulnerable groups: Poverty and disability in Uganda’, Journal of African Economies
14(4), 603–631. http://dx.doi.org/10.1093/jae/eji020 Hunt, P.C., Boninger, M.L., Cooper, R.A., Zafonte, R.D., Fitzgerald, S.G. & Schmeler, M.R., 2004, ‘Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury’, Archives of Physical Medicine and Rehabilitation
85(11), 1859–1864. http://dx.doi.org/10.1016/j.apmr.2004.07.347 International Labour Organization (ILO), 2004, ‘Uganda country profile: Employment of people with disabilities – The impact of legislation (East Africa)’, in International Labour Organizaion, Geneva, Switzerland
, viewed 11 November 2013, from http://www.ilo.org/wcmsp5/groups/public/---ed_emp/---ifp_skills/documents/publication/wcms_107842.pdf Katsui, H. & Kumpuvuori, J., 2008, ‘Human rights based approach to disability in development in Uganda: A way to fill the gap between political and social spaces?’, Scandinavian Journal of Disability Research
10(4), 227–236. http://dx.doi.org/10.1080/15017410802410084 Kyambogo University, 2014, Faculty of special needs and rehabilitation
, viewed 05 June 2014, from http://kyu.ac.ug/index.php/faculty-of-special-needs-and-rehabilitation Lang, R. & Murangira, A., 2009, Disability scoping study: Commissioned by DFID Uganda
, viewed 12 November 2013, from http://www.ucl.ac.uk/lc-ccr/downloads/06052009_Disability_Scoping_Study_Uganda.pdf Loeb, M.E., Eide, A.H. & Mont, D., 2008, ‘Approaching the measurement of disability prevalence: The case of Zambia’, ALTER – European Journal of Disability Research / Revue Européenne de Recherche sur le Handicap
2(1), 32–43. http://dx.doi.org/10.1016/j.alter.2007.06.001 Lwanga-Ntale, 2003, ‘Chronic poverty and disability in Uganda’, in GLADNET Collection, Cornell University
, viewed 08 November 2013, from http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1322&context=gladnetcollect Madans, J., Loeb, M. & Altman, B., 2011, ‘Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: The work of the Washington Group on Disability Statistics’, BMC Public Health 11(Suppl 4), S4, 1–8. Measure D.H.S., 2014, The demographic and health survey (DHS) program: Demographic and health surveys
, viewed 10 April 2014, from http://www.dhsprogram.com/ Mitra, S., 2013, ‘A data revolution for disability-inclusive development’, The Lancet Global Health
1(4), e178–e179. http://dx.doi.org/10.1016/S2214-109X(13)70016-0 Mitra, S. & Sambamoorthi, U., 2013, ‘Disability prevalence among adults: Estimates for 54 countries and progress toward a global estimate’, Disability and Rehabilitation, 1–8. Murray, A. n.d., ‘The disability legislation in Uganda: Why the “implementation gap”?’, in Norges Handikapforbund
, viewed 15 November 2013, from http://www.nhf.no/index.asp?id=69625 Ninsiima, R., 2013, Uganda census planned for 2014
, viewed 23 November 2013, from http://observer.ug/index.php?option=com_content&task=view&id=26402&Itemid=114 Norwegian Agency for Development Cooperation (Norad), 2011, Results of development cooperation through Norwegian NGOs in East Africa: Volume II
, viewed 12 June 2014, from http://www.oecd.org/countries/uganda/48484991.pdf Norwegian Agency for Development Cooperation (Norad), 2012, Mainstreaming disability in the new development paradigm: Evaluation of Norwegian support to promote the rights of persons with disabilities-Uganda Country Report 1
, viewed 12 June 2014, from file:///D:/UserData/abimanyi/Downloads/Mainstreaming%20disability%20Uganda%20(1).pdf Oxford Policy Management, Economic Policy Research Centre & Neema, S., 2013, Evaluation of the Uganda social assistance grants for empowerment (SAGE) programme: Baseline report Oxford policy management
, viewed 27 June 2014, from http://www.opml.co.uk/sites/opml/files/SAGE%20IE%20baseline%20report_final_20130815_0.pdf Payne, S., 2009, ‘Policy Brief 12: How can gender equity be addressed through health systems?’, in Health Systems and Policy Analysis: Policy Brief 12, World Health Organization and World Health Organization on behalf of the European Observatory on Health Systems and Policies. Republic of Uganda, 2006, ‘National policy on disability in Uganda in Kampala’, in Ministry of Gender, Labour and Social Development, Kampala, Uganda
, viewed 12 November 2013, from http://www.mglsd.go.ug/wpcontent/uploads/2013/07/policies/NATIONAL%20POLICY%20ON%20DISABILITY%20January,%202006.pdf Tsitsi, C., Mulumba, M., Gubela, M. & Malcolm, M., 2011, ‘African policy on disability and development: Did what? A-PODD in Uganda’, in Global Health Press
, Dublin, Ireland, viewed 14 June 2014, from http://www.academia.edu/4342193/Did_What_The_African_Policy_on_Disability_and_Development_A-PODD_Project_in_Uganda_Policy_Brief Uganda Bureau of Statistics, 2011, 2012 Uganda population and housing census
, viewed 23 November 2013, from http://www.ubos.org/?st=page&id=95&p=2012%20Uganda%20Population%20and%20Housing%20Census Uganda Bureau of Statistics and ICF International, 2012, ‘Uganda demoraphic and health survey 2011 in Kampala, Uganda’, in Uganda Bureau of Statistics and Calverton,
International Coach Federation (ICF), Maryland, viewed 12 November 2013, from http://www.ubos.org/onlinefiles/uploads/ubos/UDHS/UDHS2011.pdf United Nations Convention on the Rights of Persons with Disabilities, 2010, UN convention on the rights of persons with disabilities: Uganda’s initial status report 2010, Government of Uganda, Kampala. United Nations Human Rights, World Health Organization and United Nations Programme on HIV/AIDS, 2009, Disability and HIV policy brief
, viewed 12 November 2013, from http://www.who.int/disabilities/jc1632_policy_brief_disability_en.pdf United Nations, 2011, Disability and the millennium development goals: A review of the MDG process and strategies for inclusion of disability issues in millennium development goal efforts
, viewed 12 November 2013, from http://www.un.org/disabilities/documents/review_of_disability_and_the_mdgs.pdf United Nations, 2013, ‘A new global partnership: Eradicate poverty and transform economies through sustainable development’, in The report of the high-level panel of eminent persons on the post-2015 development agenda
, viewed 15 November 2013, from http://www.un.org/sg/management/pdf/HLP_P2015_Report.pdf World Health Organization, 2002, Towards a common language for functioning, disability and health: The international classification of functioning, disability and health
, viewed 23 April 2014, from http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf World Bank, 2009, People with disabilities in India: From commitments to outcomes
, viewed 08 November 2013, from http://wwwwds.worldbank.org/external/default/WDSContentServer/WDSP/IB/2009/09/02/000334955_20090902041543/Rendered/PDF/502090WP0Peopl1Box0342042B01PUBLIC1.pdf World Health Organization and World Bank, 2011, World report on disability
, viewed 07 April 2014, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf?ua=1 Yousafzai, A.K., Edwards, E., D’Allesandro, C. & Lindström, L., 2005, ‘HIV/AIDS information and services: The situation experienced by adolescents with disabilities in Rwanda and Uganda’, Disability and Rehabilitation
27(22), 1357–1363. http://dx.doi.org/10.1080/09638280500164297
1.Women face double stigma for being disabled and for being female in a patriarchal dominated culture like Uganda.
|