OWN, SCALE-UP & SUSTAIN The 16 th International Conference on AIDS & STIs in Africa

1. TOPIC : NEED FOR EVIDENCE BASED INFORMATION ON DISABILITY BY MRS RACHEL KAMCHACHA KACHAJE CHAIRPERSON, DISABLED WOMEN IN AFRICA(DIWA) email: rkachaje@yahoo.com and globalfield@africa-online.net 7TH DECEMBER 2011 OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

2. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Introduction People with disabilities have often been and remained excluded from HIV prevention as well as AIDS care efforts as a result of an aggregation of various taboos . On one hand, it is often presumed that people with disabilities are not sexually active and at no risk of infection, and the fact that they have less access to education and social opportunities prevents them from being in touch with preventive information and resources. The result of all this is that the exposure of men and women with disabilities to the main risk factors of HIV-AIDS are higher compared to non-disabled population. Given the lack of precision on disability statistics, it is unsurprising that statistics do not exist on how many people with disabilities are currently living with the virus or have died of AIDS-related diseases. Thus the relationship between disability and HIV/AIDS in development has been given minimal attention, particularly in sub-Saharan Africa (Banda, 2003). Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

3. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Introduction continues: Research which has been completed on disability and HIV/AIDS points to a common belief that people with disabilities are not sexually active, that having a disability is synonymous with being asexual (DFID, 2000) and that disabled people are therefore in little need of HIV/AIDS education (World Bank, 2004a). Research also suggests that programmes to change behaviour and promote condoms can be effective in preventing the spread of HIV (Lamptey, 2002). Yet people with disabilities are often denied access to these initiatives. A Global Survey on HIV and Disability by Yale University found that persons with disability are at a greater risk of HIV infection but often lack access to prevention, treatment, and support services due to barriers such as inaccessible health care centers or lack of information in appropriate alternate formats. There is also a general lack of awareness, knowledge and partnerships among key service and aid providers. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

4. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa The Convention on the Right of People with Disabilities (CRPD) calls for the collection of “appropriate information, including statistical and research data” to help assess the implementation of the Convention (Art. 31 “Statistics and Data Collection”). The Convention on the Rights of Persons with Disabilities provides an excellent framework to integrate AIDS programming for persons with disabilities. The initial meeting on AIDS and disability at the Mexico Conference demonstrated the dire need for evidence based research, programming and support in this area. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

5. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa On June 9th, 2011 the World Health Organisation, together with the World Bank, launched the first ever World Report on Disability (WRD). This marks the first opportunity for a global focus on the current status of persons with disabilities. The report provides an up to date source of global statistics on disability and inclusion and highlights the increase on disability prevalence which is one billion people, 15% of the world‟s population experience disability worldwide. In addition, there is acknowledgement that 110 - 190 million people experience a very significant impact of disability and that many social barriers are avoidable. People with disabilities have poorer health, lower education achievements, less economic participation and higher rates of poverty than people without disabilities and disability is more common among women, older people and low income households. Such evidence can all be found in this report along with the fact that the global incidence of disability is on the rise. Global figures show employment for people with disabilities is lower than national averages with 1 in 2 men and 4 in 5 women with disability being unemployed. Persons with disabilities and their families experience higher rates of barriers to food, security, housing, safe water, sanitation, and health care. In regard to education children with disabilities continue to have low enrollment rates and those with sensory or intellectual disabilities face even greater exclusion than children with physical disability. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

6. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Vulnerability to HIV/AIDS is further compounded by the social exclusion of PWDs from mainstream HIV/AIDS services and poor access to treatment. For instance, majority of existing HIV Testing and Counselling (HTC) services are physically inaccessible; do not offer counselling using sign language; Information materials on HIV/AIDS are not availed in accessible formats, complex or vague messages do not reach those with intellectual impairments, while the physically handicapped people often depend on their sexual partners to put on condoms. Importantly, most PWDs are not aware of their reproductive health rights and the existing sexual and reproductive health (SRH) services are often inaccessible to them (UNFPA, 2003). Most organizations working in the area of HIV have not included PWDs in their programmes, or do not know how to do this while disability targeted organizations rarely have HIV on their agenda, or do not know how to develop HIV/AIDS programs and projects. Consequently, sex education programs for those with disability are rare (Collins P. et al, 2001). Almost no general campaigns about HIV/AIDS focus on the needs of, or include disabled populations, and there are few rehabilitation services, especially in rural areas with an estimate of only 3% of disabled individuals getting access to the rehabilitation services they need (UNICEF,1999). Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

7. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa What is evidence based practice or information Evidence based information entails making decisions about how to promote health or provide care by integrating the best available evidence with practitioner expertise and other resources, with the characteristics, needs, values and preferences of those who will be affected. Evidence comprises research findings derived from the systematic collection of data through observation and formulation of questions which could prove if we live up to the principle of inclusive development that people with disabilities are really central and involved in the decision making process. . Research for inclusive development investigates disability in development contexts from both an individualistic point of view, i.e. the persons with disabilities and their lived realities, and also seeking to find out more about where and how to address and overcome attitudinal, environmental and social barriers for participation and inclusion. Evidence will inform us to keep on doing well what we already do well and improve our practice where we could do better. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

8. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Today, every professional discipline is being called upon to document its effectiveness. Current questions often being asked of professionals are: "How do we know if current professional practices are effective in bringing about the desired outcomes? Or "Are there other approaches, or modifications of existing approaches, that might produce better outcomes or similar outcomes at less cost?" or “How must society change to ensure that having a disability does not mean exclusion and discrimination?” All these processes of documenting professional and community practices and their effectiveness in establishing evidence or facts are actually research in action. Evidence-based approaches should therefore help decision makers, professionals, parents, and others to make informed decisions. At the same time, by understanding what shapes policymakers’ and practitioners’ decision making process and the role of research evidence in those decisions, the research community can improve the likelihood that their work will be used to inform policy and practice. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

9. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa Despite the magnitude of the issue, awareness of and scientific information on disability issues are lacking . Globally, there is a growing momentum for addressing the human rights of PWDs. However, governments and policy makers have rarely considered the needs of disabled people when formulating their HIV/AIDS policies. As such, PWDs are often excluded from consultation processes while major HIV/AIDS donors, aid agencies and specialised NGOs do not consider disability a concern that should be prioritized in the allocation of funding. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

10. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa • As somebody from the disability sector and an activist, I would say that there is a strong need for evidence based information on disability as we are talking of 650 million people with disabilities globally who need not to be ignored in whatever form. Hence I suggest the following recommendations to be considered at this ICASA meeting: • Capacity building in ensuring that people mandated to deal with issues of HIV AIDS and disability are provided with information on disability and further sensitized on issues of disability and development. • More attention needs to be given to government, NGOs, development agencies and Human rights organization’s officials to ensure that they are able to effectively plan and implement programs that mainstream disability related programs. • Capacity building through training and provision of resources for organizations of people with disabilities to enable them to plan implement, evaluate and mobilize resources for programs related to HIV and AIDS. Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

11. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa • Mainstreaming of Disability into HIV/AIDS Policies, Programs - The UN Convention on the Rights for Persons with Disabilities is the tool that may be used to guide the successful drafting and implementation of policies, legislations and programs. • A quota funding strategy by development agencies should be used to ensure that funding is also channeled to disability related programs. • Existing HIV and AIDS community based programs should be all inclusive to ensure the mainstreaming of disability related programs. These programs must include income generating projects, life skills such as training in home based care Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN

12. The 16th International Conference on AIDS & STIs in Africa, Addis Ababa • THANK YOU: Please insert Partner’s Logo here OWN, SCALE-UP & SUSTAIN