Investing in one billion people with disabilities around the world
Von Muriel Mac-Seing / Handicap International
HIV and AIDS remains one of the most widespread disabling epidemics worldwide. The disease leads to impairments, activity limitations and reduced social participation. Moreover, people with disabilities who constitute approximately 15% of the global population (more than one billion people), have a heightened risk to HIV infection compared to non-disabled people due to various reasons. To address this, Handicap International (HI) has been involved in the global HIV response in relation to disability since 1994. The article summarises: the intersection between HIV and disability, the work of Handicap International on HIV and AIDS among people with disabilities in Sub-Sahara Africa and South East-Asia, lessons learned and good practices in the inclusion of disability in HIV programming, and ways forwards and recommendations.
To date, HIV and AIDS remains one of the most widespread disabling epidemics worldwide. The disease leads to impairments, activity limitations and reduced social participation. This has a severe impact on quality of life, both for people infected with HIV and AIDS and their affected families and communities. (Hanass-Hancock & Nixon, 2010). More specifically, HIV is now considered a chronic and cyclical disease, with periods of wellness and illness. HIV is a complex and multi-systemic disease affecting the cardio-respiratory and musculoskeletal systems of the body. This, in turn, requires a multi-dimensional response to disease prevention and rehabilitation interventions. (Canadian Working Group on HIV and Rehabilitation, 2011) Indeed, any person living with HIV is likely to experience temporary and/or chronic impairments (such as musculoskeletal impairments, neuro-cognitive disorders, blindness and hearing impairments), at different phases of the illness, due to acquired infections and/or side effects from taking antiretroviral drugs. People with disabilities who become HIV positive might also undergo similar processes of activity limitations, in addition to existing impairment(s).
The intersection between HIV and disability
According to the World Health Organization’s Community-based Rehabilitation Guidelines (WHO/UNESCO/ILO/IDDC, 2010), rehabilitation becomes increasingly important for people who may be experiencing disability as a result of HIV and AIDS. Furthermore, in light of the 2007 Convention on the Rights of Persons with Disabilities, which 130 countries have ratified to date (www.un.org/disabilities/), asymptomatic people living with HIV can also be considered as disabled, due to exclusion from social participation as a result of stigma and attitudinal and environmental barriers related to their health status. To this effect, the UNAIDS Disability and HIV Policy Brief (UNAIDS/WHO/OHCHR, 2009) recognises the interrelations between HIV and disability and stresses the importance of addressing both sectors in an integrated fashion. The salient points of the UNAIDS Policy Brief are:
- HIV risk behaviours among people with disabilities;
- their high vulnerability to sexual violence;
- their low access to HIV education, information and prevention services;
- their limited access to treatment, care and support; and
- importance of addressing rehabilitation needs among people living with HIV.
Althouth limited, the epidemiological evidence available on HIV and disability suggests that people with physical, intellectual, mental or sensory disabilities are as likely, if not more likely, to be at risk of HIV infection. (Groce, 2004) The few available HIV prevalence studies that include people with disabilities support this claim as they indicate similar or higher HIV infection rates among this group. For instance: a survey from South Africa reports HIV prevalence among people with disabilities at 14.1% (against 10.9% in the national HIV prevalence in 2008; Shisana et al., 2009); a study from Kenya among deaf people reports HIV prevalence at 7% (against 6.7% in the national HIV prevalence in 2007; Taegtmeyer, et al, 2008); and unpublished data from Senegal suggest that HIV prevalence among people with disabilities in the Dakar region is almost double (1.2%) that of the non-disabled population. (RARS/APAPS, 2011)
From Sub-Sahara Africa to South East Asia: Handicap International’s work on disability and HIV
As a key development issue, HI has been involved in the global HIV response since 1994, with its first HIV field interventions in Burundi. HI was one of the first organisations to speak about the interrelation between HIV and disability in the context of developing countries, spearheading the Africa Campaign on Disability and HIV and AIDS. (More information on the Africa Campaign on Disability and HIV and AIDS: /www.africacampaign.info The primary rationale for HI’s operational strategy on HIV and AIDS concerns the marked vulnerabilities to HIV of people with disabilities who constitute approximately 15.6 % (11.8-18.0 %) of the world’s population (the rate is estimated to be 19% among the female population; World Report on Disability 2011).
As stated previously, people with disabilities have an equal or heightened risk to HIV infection compared to non-disabled people. This challenges the common misconceptions that people with disabilities are sexually inactive and do not require HIV or sexual reproductive health services. Indeed there is a broad range of discriminatory practices and social stigma that contribute to the vulnerability and social exclusion of women, men and children with disabilities, such as limited access to basic services (in particular health, education, transportation) and specifically a lack of accessible HIV and sexual and reproductive health information and services. (Groce, 2004; World Health Organization and UNFPA, 2009).
For the various actions undertaken by HI in HIV prevention, treatment, care and support, the main targets and beneficiaries are: people with physical, vision, hearing, intellectual and mental impairments; and other vulnerable groups, such as women and girls, youth in and out of school, orphans and vulnerable children and people living with HIV. Furthermore, HI works in close partnership with Disabled People’s Organisations (DPOs), mainstream AIDS Organisations, Associations of People Living with HIV and National AIDS Authorities.
So far, HI has been active in the sector of HIV and AIDS in 11 countries throughout the world: Ethiopia, Kenya, Somalia (Somaliland and Puntland regions), Rwanda, Burundi, Mozambique, Mali, Senegal, Cambodia, Vietnam and Laos. In most of these countries, HI exerts an emphasis on promoting the inclusion of people with different impairments and other vulnerable groups within existing HIV prevention, treatment, care and support services. Various strategies and interventions have been selected by HI to address inclusion and accessibility of HIV and AIDS services to all, for example:
- Institutional strengthening of local authorities and policy-makers
- Capacity building and reinforcement of partner organisations as well as health/HIV related service providers
- Awareness-raising that is responsive to the different communication needs of people with disabilities
- Removing barriers and promoting facilitating factors which promote enhanced accessibility to quality services
- Use of advocacy evidence-based to influence policy change
- Significant participation of people with disabilities and involvement of DPOs
- Collection, disaggregation and utilisation of data based on sex, age and impairment
- Monitoring and evaluation combined with research and studies which inform strategic and programmatic decision-making and projects’ design
Not only are people with disabilities more vulnerable to HIV – they also are at significantly heightened risk and vulnerability to sexual and reproductive health problems (Handicap International, 2011) and gender-based violence. (Barile, 2002; INWWD, 2010) Indeed these three critical sectors are very much seen as intersecting, sharing the common pervasive root causes of gender inequality, poverty, stigmatization and social marginalisation. As such, Handicap International has developed and promotes an holistic, integrated and inclusive vision for HIV and AIDS programming (Handicap International, 2012) which addresses these complex and multi-dimensional needs and priorities for target populations including women, men and children with disabilities.
Lessons learned and good practices on disability inclusion in the HIV and AIDS response
HI continues to undertake various lesson learning processes in order to identify and analyse our experiences of disability-inclusive HIV and AIDS programming. Here we briefly present three examples of good practice which offer an insight into the scope and diversity of our projects and illustrate some of the positive changes achieved for key stakeholders:
1st Good Practice at HIV counselling and testing level: adaptation of methodologies for increased uptake of HIV services among people with visual and hearing impairments in Kenya
In 2012-2013, with the financial support of the Kenya Government and the World Bank, HI implemented two HIV prevention projects for people with visual and hearing impairments in the Nairobi and Kitale regions of Kenya. Adaption of information, education and communication (IEC) materials in accessible formats for people with sensory impairments was vital for ensuring more targeted interventions. This was further enhanced by the ongoing participation and critical feedback of people with disabilities in the design, utilisation and monitoring of IEC tools and materials. From this project experience, we have learned that packaging health/HIV communication messages in accessible, user-friendly formats for people with hearing and visual impairments and then disseminating them through peer education has significantly strengthened the uptake of voluntary counselling and testing services.
2nd Good Practice at Disabled People’s Organisations (DPO) level: organisational development leading to resource mobilisation in Rwanda
From 2008 to 2013, HI implemented a project on HIV prevention, sexual violence protection and services for people with disabilities in 18/30 districts in Rwanda, using funding from HRSA/PEPFAR. (HSRA)The project’s specific objective was to strengthen the organizational, managerial and technical capacities of local stakeholders to provide quality HIV prevention and care to people with disabilities. As part of the lesson learning process at the end of the project, an in-depth, multi-stakeholder, qualitative study (Handicap International, 2013) was conducted over a period of three months, to analyse the most significant changes from the project and to model specific good practices for further adaptation or replication in other contexts. This study involved an extensive literature review, field visits and semi-structured interviews with key staff, partners and beneficiaries. Five good practice case studies were recorded in the study, one of which concerned the ongoing organisational development and strengthening of local DPOs to improve their governance mechanisms, programme development and activity implementation skills. As a result of this practice, two of the main project partnering DPOs – the Umbrella of Persons with Disabilities in the Fight against HIV and AIDS in Rwanda (UPHLS) and The General Association of People with Disability in Rwanda (AGHR) – were able to successfully mobilise funds to develop HIV projects targeting women and men with disabilities of different counties of Rwanda. This was essential for the institutional development of the DPOs, enabling them to continue and sustain their actions.
3rd Good Practices at individual level: a tailored initiative for rural deaf women on HIV prevention and sexual violence protection in Cambodia
Working in rural communities with deaf women, through awareness-raising on HIV, sexual and reproductive health and sexual violence protection, was a pivotal component of HI’s HIV project in Cambodia, funded by the AFD (2008-2011). The activities were centred on supporting deaf women to learn more about HIV and sexual violence prevention and services. There were a number of key good practices identified, including:
- Mapping of people with disabilities and in particular, deaf people living in target villages
- Conducting home visits and mobilizing local leaders to encourage community ‘buy-in’ (as a result of which, sign language classes and HIV and sexual violence prevention sessions were organised in the commune council halls)
- Close partnership with the Deaf Development Programme of Maryknoll to devise a joint sign language curriculum in Khmer and HIV prevention and education
- Training of educated deaf women to become future trainers and facilitators of awareness-raising of deaf women. These newly trained deaf women were paired with a member of HI’s staff that had received basic sign language training, to foster coaching and shared learning
- Design and utilisation of pictures, simple messages, and role play as well as guided tours of local service and facilities
- Capturing regular feedback from target beneficiaries and implementing partners to improve or revise project implementation
Ways forward: investing in one of the largest minorities at risk of HIV, discrimination and invisibility
There are over one billion people with disabilities in the world of whom 110-190 million people (2-3% of the global population) experience very significant difficulties. (World Report on Disability 2011) The prevalence of disability is growing due to an ageing population and the global increase in chronic health conditions, including HIV and AIDS. These are percentages which can no longer be ignored by policy- and decision-makers who are mapping a national strategy towards universal access and targeting zero.
According to the UNAIDS’ Investment Framework (UNAIDS 2011), as featured in the Lancet (Schwartlander et al., 2011), in order to 1) maximize the benefits of the HIV response, 2) support more rational resource allocation based on country epidemiology and context, 3) encourage countries to prioritize and implement the most effective programmatic activities, and 4) increase efficiency in HIV prevention, treatment, care and support programming, it is of utmost importance to fully understand how the HIV epidemic impacts different vulnerable groups before mobilising resources, designing programmes, delivering interventions or sustaining existing initiatives.
In light of the above, it is argued that the inclusion of disability must be seriously considered as a key priority in both global and national AIDS responses worldwide. Continued exclusion of people with disabilities would raise serious ethical and accountability concerns among key international/national stakeholders as well as organisations and service providers involved in both prevention and response to HIV and AIDS. Hence, HI strongly recommends that key decision-makers on HIV and AIDS response comprehensively address the following:
- Guarantee equal access to HIV prevention, treatment, care and support services (including rehabilitation) so as to significantly decrease or eliminate the heightened risk of women, men and children with disabilities contracting HIV
- Mainstream accessibility standards and disability inclusion as cross-cutting at all levels of the HIV and AIDS response (including organisation development, recruitment of staff, prevention, services, products, policies, etc.)
- Ensure that IEC and behaviour change and communication materials/tools are accessible to people with disabilities, addressing their different communication needs (e.g. using large print, use of audiovisual, Braille, sign language, more pictures including images of people with disabilities as well as pictograms, using less words and more simplified language)
- Build the capacity of all HIV prevention and response service providers to enable the provision of disability- and gender-sensitive information and services
- Directly involve women, men and children with disabilities/DPOs, especially organizations of women and girls with disabilities in the design, implementation, monitoring and evaluation of HIV prevention and response services
- Prohibit all forms of discrimination that may hinder access to justice, medical, legal and psychosocial services among people living with HIV
- Ensure that women, men and children with disabilities and their families have access to information on their HIV and disability rights – particularly those who do not have access to mainstream education – so that they can identify, prevent and act upon their risks and vulnerability
- Ensure data in monitoring and evaluation system tools are disaggregated by sex, age and impairment
- Ensure disability budgeting and funding are appropriate in order to “keep the promise” in reaching and serving all people in face of the AIDS epidemic
- Ensure accountability of international structures, government and civil society in preventing and responding to HIV and AIDS among those most at risk and those who have been made invisible in the course of the HIV response, such as the significant population of people with disabilities.
*Muriel Mac-Seing has a Bachelor degree in Nursing Sciences and Master degree in Applied Sciences. She works as HIV and AIDS / Protection Technical Advisor at Handicap International in Geneva. Contact: email@example.com
- Barile, M. (2002). Individual systemic violence: Disabled women’s standpoint. Journal of International Women’s Studies. Volume 4 #1 November.
- Canadian Working Group on HIV and Rehabilitation (2011). E-module for evidence-informed HIV rehabilitation. Retrieved from: http://hivandrehab.ca/EN/resources/documents/Form.doc
- Groce, N.E (2004). HIV/AIDS & Disability: Capturing Hidden Voices. World Bank and Yale University: Yale.
- Hanass-Hancock, J. & Nixon, S. (2010). HIV, disability and rehabilitation. Consideration for policy and practice. HEARD and University of Toronto.
- Handicap International (2011). Sexual violence and abuse faced by persons with disabilities. Formative research in Dire Dawa and Addis Ababa. Ethiopia. Handicap International.
- Handicap International (2012). Inclusive and integrated HIV and AIDS programming. Policy paper. Handicap International, France.
- Handicap International (2013). Strengthening communities to integrate persons with disabilities in the HIV & AIDS response in Rwanda. Satellite lessons learned document. Handicap International, Rwanda.
- HSRA: Health Services and Resources Administration of the US Department of Health and Human Services; PEPFAR: The Unites State President’s Emergency Plan for AIDS Relief.
- International Network of Women with Disabilities (INWWD) (2010). Document on Violence against women with disabilities.
- RARS/APAPS (2011). Rapport de l’étude sur la vulnérabilité des personnes vivant avec une déficience face au VIH dans la région de Dakar au Sénégal. Unpublished report. Handicap International.
- Schwartlander, B. et al. (2011). Towards an improved investment approach for an effective response to HIV/AIDS. The Lancet, volume 377, issue 9782, pages 2031-2041.
- Shisana, O. et al. (2009). South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2008: A Turning Tide among Teenagers. HSRC Press: Cape Town.
- Taegtmeyer, T. et al (2008). A peer-led HIV counselling and testing programme for the deaf. Kenya Disability and Rehabilitation, 31(6): p. 508-514.
- UNAIDS (2011). A New investment framework for the global HIV response. Issues Brief. Retrieved from: http://icssupport.org/wp-content/uploads/2012/02/3-Investment-Framework-Summary-UNAIDS-Issues-Brief.pdf
- UNAIDS/WHO/OHCHR (2009): Disability and HIV policy brief.
- WHO/UNESCO/ILO/IDDC (2010). CBR guidelines. Supplementary booklet. Geneva.
- World Health Organization and UNFPA (2009). Promoting sexual and reproductive health for persons with disabilities. WHO Library.
- World Health Organization and World Bank (2011). World Report on Disability. WHO Library