BMAU BRIEFING PAPER (5/19) May 2019 Access to Health Care Services. Experiences of Persons Living with Disabilities in Eastern and Northern Uganda Overview Key Issues Over the last two decades, the Government of Uganda (GoU) has increased access to health i.) Eastern region recorded more (1.3 services through various programmes and projects million persons) excluded from including investment in health infrastructure, appropriate access to health care medicines and other health supplies; and human services, than the Northern region resource development. Despite the investments, the (1.01 million persons) due to the desired universal health coverage is far from higher number of the persons with attainment as some sections of the population disabilities. (persons with disabilities and or clients with special conditions) fail to have easy access to basic health ii.) Northern region recorded more care services. mistreatment (averaged at 16.5%) when providing health care due to poor Article 25 of the UN Convention on the Rights of attitudes of health workers compared to Persons with disabilities (CRPD) states that Parties Eastern Uganda (averaged at 6.5%). recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of iii.) Medical equipment that Government health without discrimination on the basis of and development partners procure disability. It also states Parties shall take all partly exclude the needs of persons appropriate measures to ensure access for persons living with disabilities. with disabilities to health services that are gender- sensitive, including health-related rehabilitation. iv.) Tracer medicines exclude less privileged patients who have unique This briefing paper presents the experiences of conditions such as mental disorders persons living with disabilities while seeking health and albinism, yet many health facilities care from selected Health Center IVs (Mungula, do not prioritize ordering for such Yumbe, Aboke, Kiyunga, Budondo, Busesa, Midigo) medicines from National Medical in Eastern and Northern Uganda. Stores. The issues identified in this paper are a proxy of the status of service delivery at all levels of care thus the proposed recommendations are aimed at addressing overall sector service delivery challenges. The goal of this Health Sector INTRODUCTION Development Plan is to accelerate The Financial Year 2018/19 marks the movement towards Universal Health second last year of implementation of the Coverage (UHC) with essential health and second National Development Plan (NDP related services needed for promotion of a II), and the Health Sector Development Plan healthy and productive life. UHC ensures 2015/16 - 2019/20. that all people receive essential and good 1 MINISTRY OF FINANCE, PLANNING AND ECONOMIC DEVELOPMENT BMAU BRIEFING PAPER (5/19) May 2019 quality health services they need without ministries, departments and agencies suffering hardship. (MDAs) an opportunity to focus on other components of equity and score a Pass mark, The goal of the Health Sector Development while neglecting the disability component. Plan is in consonant with the implementation of the Gender and Equity NUMBER OF PERSONS LIVING WITH Budgeting clauses as enshrined in the Public DISABILITIES Finance Management Act, (2015). Uganda has 4.9 million persons living with The PFMA requires that the Minister of disabilities, of which 1.3 million are from Finance, Planning and Economic the Eastern Region, while 1.01 million are Development issues a gender and equity from the Northern region (Table 1). compliance certificate in consultation with the Equal Opportunities Commission that The Uganda National Population Census conducts the assessments. (UNPC) (2014) rated disability prevalence at 12.4% for the population aged 2 years and The assessment seeks to ensure elimination above, while the equivalent for 5 years and of discrimination and inequalities against above was approximately 14%. The Eastern any individual or group of persons on the region had a higher number of population ground of sex, age, race, color, ethnic origin, aged 2 years and above living with tribe, birth, creed or religion, health status, disabilities (Table 1). social or economic standing, political opinion or disability … to ensure universal Table 1: Proportion of the Persons with access to services. Disabilities by level or region (Million) Level/ Popu No. Popu No. Popu No. The CRPD defines/identifies persons with Regio latio Disa latio Disa latio Disa n n bled n bled n bled disabilities/special conditions, to include 2018 201 2019 201 2020 202 ‘those who have long-term physical; mental, 8 9 0 intellectual or sensory impairments, which Nation in interaction with various barriers may al 39.05 4.84 40.30 4.99 41.58 5.15 hinder their full and effective participation in society on an equal basis with others Easter n 10.19 1.26 10.51 1.30 10.83 1.34 (UFDS 2017). Northe The gender and equity compliance of the rn 7.90 0.98 8.15 1.01 8.40 1.04 health sector Ministerial Policy Statement was 84% in FY2016/17, 75% in FY2017/18, Source: UBOS-2018 and 78.3% in FY 2018/19. Despite the performance, equity needs in the health sector remain partially met. This is partly because the equity component consists of many variables such as location, age, and disabilities. This allows the 2 MINISTRY OF FINANCE, PLANNING AND ECONOMIC DEVELOPMENT BMAU BRIEFING PAPER (5/19) May 2019 EXPERIENCE OF PERSONS LIVING during birth because of her disability. The WITH DISABILITIES (PWDs) WHEN health worker was also not willing to assist SEEKING HEALTH CARE her access the examination bed”. This section shares field experiences of B. Lack of appropriate equipment and PWDs while seeking health care at HCIVs assistive devices of: Mungula in Adjumani District, Midigo, and Yumbe in Yumbe District, Aboke in Besides discrimination and mistreatment, Kole District, Kiyunga in Luuka District, the persons with disabilities somewhat Busesa in Bugweri District, and Budondo in experience difficulty in accessing services. Jinja District. BMAU field findings indicated that basic equipment such as examination and delivery A. Mothers, Children, Youth, and beds were inappropriate for pregnant Elderly living with disabilities are mothers living with disabilities. The mistreated weighing scales for children and adults were also not appropriate to for persons with The 2017 Uganda Functional Difficulties disabilities particularly those with physical Survey (UFDS) established that 9 per cent impairments who could not stand. None of of persons with disabilities felt disrespected the HCIVs visited had the appropriate or humiliated by the treatment and behavior examination and delivery beds for persons of staff at health facilities. Eight per cent of living with disabilities. males, and 7 per cent of females were mistreated when seeking help for physical The district procurement officers problems. demonstrated limited skills for inclusion of the equity concerns in all procurements (for Mistreatment of the persons with disabilities instance - examination and delivery beds, while seeking care was highest in Northern and other assistive devices) and the Uganda - Lango (18%), followed by West development partners’ deliveries were not Nile (15%). Eastern Uganda sub-regions on any different at these facilities. the other hand recorded lower percentages as follows; Bukedi at 9%, Busoga at 8%, Delivery and examination beds among other Teso at 5% and Bugisu at 4% (UFDS, equipment procured under the World Bank 2017). funding of the Uganda Health Sector Strengthening Project (UHSSP) delivered to During the BMAU Semi-Annual FY2018/19 Aboke, Kiyunga and Bundondo HCIV did monitoring, an interaction with patients not include any suitable for the mothers living disabilities who sought care at the HC living with disabilities. IVs expounded the UFDS finding. It was C. Inappropriate means of established that these persons were communication: Mediums of discriminated and mistreated. ‘‘At Aboke information access such as sign HCIV in Kole District, a mother living with language, braille and easy-to-read a disability (physical impairment) reported formats for persons with disabilities that she was one time told by a health were not available for either disease worker to stop conceiving as she would die 3 MINISTRY OF FINANCE, PLANNING AND ECONOMIC DEVELOPMENT BMAU BRIEFING PAPER (5/19) May 2019 prevention, health promotion and/or building of all the stakeholders on the curative services. unique needs of the PWDs will assist to reverse the status quo. The health facilities neither had sign language interpreters, nor assistive hearing Policy Recommendations aids for those with hearing impairments, nor i.) The MoH should adopt holistic planning did the health workers have the requisite in the next Health Sector Development skills to comprehend the sign language. Plan and NDPIII to ensure universal Such patients did not receive quality access to health services. services once they sought care from these ii.) The MoH and National Medical Stores facilities. The visually impaired similarly should expand tracer medicines to did not receive prescriptions in braille to include those that address special enable them understand the medication conditions for PWDs. requirements. iii.) The MoH should provide training to health workers in basic sign language D. Lack of appropriate medicines interpretation and other key skills to ease Patients who had conditions that could not access to services PWDs.