Empowering communities to include persons with disabilities in the response to HIV/AIDS Gallican Mugabonake HIV/ AIDS Project Coordinator 21 st February 2011 Project title and main donors Title: Empowering communities to include persons with disabilities in the response to HIV/AIDS in Rwanda Main donor: United States Presidents Emergency Plan for AIDS Relief (PEPFAR)/Health Resources and Services Administration (HRSA) as part of the New Partners Initiative (NPI) Total budget: USD 1,564,900 Implementation period and geographic location 1) Implementation period: June 2008 May ) Geographic location 217 sectors, 16 districts 3 Districts (city of Kigali): Gasabo; Nyarugenge and Kicukiro; 6 Districts, Eastern Province: Nyagatare, Gatsibo, Kayonza, Rwamagana, Ngoma and Bugesera; 5 Districts, Southern Province: Muhanga, Kamonyi, Ruhango, Nyaruguru and Gisagara; 2 Districts, Northern Province: Gicumbi and Rulindo. General and specific objectives General objective: To help to reverse the trend of the HIV epidemic in Rwanda through the involvement of persons with disabilities (PWD) in the national and community-led response Specific objective: To strengthen the organisational, managerial and technical capacity of local communities, enabling them to provide high quality prevention and treatment, care and support services for persons with disabilities in Rwanda Expected outcomes Expected outcome No.1: The organisational and technical capacity of the Umbrella of Persons with Disabilities in the Fight against HIV and AIDS, 4 disabled persons organisations and 2 community-based organisations is strengthened and their involvement in the national response is increased Expected outcome No.2: HIV prevention services are expanded to include at least 60,000 persons with disabilities and 180,000 members of the community Expected result No.3: Treatment, care and support for people living with HIV is expanded to include at least 1,200 persons with disabilities living with HIV Beneficiaries NActivitiesNumber of beneficiaries reached at 31/12/10 % MenWomenTotal 1Trainers (PWDs) % 2Trainers (community) % 3Peer-Educators (PWDs) % 4Peer-Educators (community) ,420102% 5Awareness-raising (PWDs)38,00447,10085,104142% 6Awareness-raising (community)37,11555,82392,97866% 7Voluntary counselling and testing (PWDs)11,14214,91326,055174% 8Voluntary counselling and testing (community) 6,4898,74515,23444% 9Community volunteers for home care % 10Home care for PWDs living with HIV % Main partners Institutional partners Rwanda Ministry of Health Commission Nationale Rwandaise de Lutte contre le Sida (Rwanda National AIDS Control Commission) Center for Treatment and Research on AIDS, Malaria, Tuberculosis and Other Epidemics (Trac Plus) US Centers for Disease Control and Prevention/Rwanda John Snow, Inch (Technical Assistance) Main partners (continued) Partner associations Umbrella des personnes en situation de handicap luttant contre le Sida or UPHLS (Umbrella of Persons with Disabilities in the Fight against HIV and AIDS) Organisation dAppui aux Groupements de Personnes Handicapes au Rwanda or AGHR (General Association of the Disabled in Rwanda) Union Rwandaise des Aveugles or URA (Rwanda Union for the Blind) Association Nationale des Femmes Sourdes et Muettes or ANFSMR (National Association of Deaf and Dumb Women in Rwanda) Collectif de Plaidoyer pour les enfants et jeunes avec dficience intellectuelle Tubakunde (an advocacy group for children and youths with intellectual disabilities) Duterimbere Association Caritas Rwanda Activities Domain 1: Advocacy for the inclusion of disability Setting-up of a technical task force on disability and HIV Organisation of a national forum on disability and HIV/AIDS Development and dissemination of a report on HIV and disability in Rwanda Inclusion of disability in HIV-related activities Inclusion of HIV in disability-related activities Activities (continued) Domain 2: Capacity-building Organisational assessment Support for the implementation of a system of planning and administrative and financial management Granting and monitoring of subsidies Support for technical capacity-building in HIV/AIDS Activities (continued) Domain 3: Prevention Design and adaptation of IEC tools for people with disabilities Training of trainers and peer educators with disabilities on HIV prevention Training of educators and parents of children and youths with intellectual disabilities Training of community leaders, women and youth peer educators from the community on HIV prevention, disability and the inclusion of disability HIV awareness-raising for persons with disabilities and members of the community Easier access to voluntary counselling and testing Activities (continued) Domain 4: Treatment, care and support Training of community volunteers on HIV and disability Home follow-up for persons with disabilities living with HIV Setting-up of a system of community referral to health care facilities for full treatment, care and support of people with disabilities living with HIV Main achievements Development by the Ministry of Health of a policy for including disability in the community health system based on a holistic approach Inclusion of people with disabilities in national reporting documents and monitoring Set-up of a national technical task force on people with disabilities within TRAC Plus Adoption of a minimum package for people with disabilities at national level Inclusion of HIV-related activities in disabled persons organisations Main achievements (continued) Over 25% of persons with disabilities reached by the awareness-raising action have access to voluntary counselling and testing services Development and validation of IEC tools adapted to persons with disabilities Two strongly community-based organisations have succeeded in including persons with disabilities in their actions One international organisation (ICAP) is testing inclusion in care and treatment services Main obstacles No investment in studies to obtain data on the extent of the problem in advocacy initiatives Baseline unknown and not provided for by the project Limited financial resources in view of the geographic area and the large number of beneficiaries to be reached Technical staff insufficiently prepared for the technical demands of the project and institutional donors Main obstacles (continued) The importance of monitoring and evaluation underestimated and not integrated into the organisations global monitoring mechanism Communication and advocacy strategy very underdeveloped at project level Main obstacles (continued) Solutions to be considered Systematically provide for a baseline and final evaluations in new projects Plan studies on the vulnerability of persons with disabilities to HIV Develop a monitoring-evaluation system at programme level and the necessary resources Lessons learned The existence of a solid community network among partners facilitated the inclusion process Activities run more smoothly among partners with a sound internal structure Mobilising public institutions was a lengthy process Across-the-board awareness-raising among health providers is a prerequisite to successful inclusion Lessons learned (continued) Coverage of the 16 districts by each partner: insufficient monitoring and supervision of community volunteers by newer organisations Strengthening partners organisational and technical capacities is a long-term undertaking The training and awareness-raising of health providers was not a strong component: knowledge of disability still low Lessons learned (continued) Considerable resources (75% of the budget) allocated essentially towards associations and less towards health facilities: priority on community mobilisation and participation (with a peer-education approach that enabled us to reach a large number or beneficiaries) Main documents DVD: Documentary on the specific vulnerability of Persons with Disabilities (PWDs) to HIV, UPHLS (Kinyarwanda and English), 2010 Training module on disability and HIV/AIDS (draft) in French, UPHLS, 2010 and a peer-educator guide (draft) in Kinyarwanda, 2010 Guidelines on the integration of disability into the community health system (draft in French and English, Ministry of Health, 2009) Inclusion guide (draft), UPHLS, 2010 Picture boxes produced in 2010, in Kinyarwanda - Reasons for taking ARV - Voluntary Counselling and Testing (VCT) - Fighting opportunistic infections - Fighting STDs CD: A play about the response to HIV among people with disabilities Dukuze, Ahorukomeye, Bwiza, 2010 Sketch on PWDs Rights and HIV/AIDS, AGHR in Kinyarwanda, 2010 Looking forward Capitalising on experience and lessons learned Second phase with the same operational approach but on a smaller scale Training and awareness-raising of health providers on the inclusion of people with disabilities Awareness-raising among persons with disabilities Partnership with schools and community set-ups to reach young persons with disabilities Dissemination of IEC tools adapted to persons with disabilities Looking forward (continued) Mobilisation of financial resources in order to conduct studies on the vulnerability of persons with disabilities to HIV and their access to HIV-related products and services Promotion of the campaign to overcome gender-based violence among persons with disabilities Participation in technical task forces on HIV and disability Operational partnership with an international NGO on the inclusion of persons with disabilities Thank you