1. HIV and disability: Ensuring Access
Muriel Mac-Seing
HIV and AIDS/Protection Technical Advisor
Handicap International
HIV/AIDS CORE GROUP WEBINAR
September 23, 2013
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2. For the first time in UNAIDS’ Strategy 2011-2015…
“When social support and other programmes
for persons with disabilities are delivered in
an HIV-sensitive manner, they contribute
to overcoming the historic neglect of HIV
prevention and support to persons with
disabilities.”
Also for the first time in the declaration of the High Level Meeting in 2011 were four comments on disability
HLM on Sept 23 on disability and development:
Ban Kim Boon just mentioned at the current HLM in NY (Sept 2013): “MDGs galvanized international commitment. But more than 1.3 billion still live in extreme poverty. “Large inequalities remain linked with income, accessibility, disability and the realization of Human Rights”. He also mentioned that the post-2015 framework should be “rights based with a particular emphasis on women, children and other marginalized groups”.
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3. and always wanted to know more about HIV and disability?
What do we know so far
and always wanted to know more
about HIV and disability?
(5 min brainstorming)
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4. Outline of presentation
Key facts
What is disability
Intersection between HIV and disability
Handicap International (HI)’s experience in HIV and AIDS for people with disabilities
Good practices and lessons learned from HI
Some challenges
International tools and national policies
Opportunities and ways forwards
Online resources on HIV and disability

5. Some facts
15% of the world’s population lives with a disability (19% among female population); 2-3% lives with severe disabilities (WHO/WB, 2011)
5-10% of all children in Africa grow up with disabilities (UNICEF, 2013)
People with disabilities make up 20% of the poorest in the world (UN, 2011)
The prevalence of violence against people with disabilities is 1.3 times higher than that in the general population (Lancet, 2012)
Children with disabilities are 3.7 times more affected by all forms of violence than their non-disabled peers (Lancet, 2012)
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6. Some facts (continued)
People with physical, intellectual, mental or sensory disabilities are as likely, if not more likely, to be at risk of HIV infection (Groce, 2004; UNAIDS/WHO/OHCHR, 2009)
Women and girls with disabilities in particular are often at increased risk of HIV as a result of their increased exposure to sexual violence (Enarson, 2009)
Few available HIV prevalence studies among people with disabilities show similar or higher prevalence than national averages in South Africa, Kenya, Cameroon and Senegal (IDDC, 2012)
PLHIV are also at risk of developing disabilities on a permanent or episodic basis as a result of their illness and/or side effects of ARV (Hanass-Hancock & Nixon, 2010; O’Brien et al, 2008)
IDDC (International Disability and Development Consortium) Brief Paper on HIV and disability:
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7. What is disability?
The medical model historically focuses on the dysfunction or impairment of the individual
The social model of disability asserts that the impairment itself is not an obstacle for the disabled individual, but is a socially-created problem and demands a political and social response
Convention on the Rights of Persons with Disabilities (2007): “… disability is an evolving concept and results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others ...”
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8. The ICF as a model of disability (WHO, 2001)
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9. HIV and ART seen under the ICF
HIV as a health condition
Impairments e.g.
blindness caused through TB treatment
Activity limitation e.g. not able to see and read
Participation restriction
e.g. exclusion from work, stigma
Environment
e.g. no life skills or workplace adjustment
Personal Factors
e.g. depression, gender,
hope
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10. Why people with disabilities are at risk to HIV and AIDS?
Lack of access to education in particular sexuality/sexual health education
Increased risk to sexual violence and exploitation
Potential of increased risk behaviors
Lack of access to inclusive health products and services
Increased likelihood of living in poverty
Stigma (disability, gender and HIV), misconceptions and negative attitudes from family, community and society
Lack of application of national laws and policies supposed to protect and promote rights
Lack of knowledge/skills from service providers
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11. HIV prevalence among at-risk populations in South Africa, 2008
Source: South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008
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12. Interrelationship between HIV and AIDS and disability
People with disabilities
Lack of access to education especially sexuality/sexual health education
Lack of access to HIV information and services
Increased risk to sexual violence and less access to justice
Negative attitudes from service providers
Stigma and discrimination (disability, gender and HIV)
PLHIV developing epidosic and/or chronic disabilities
Mental health disorders: depression, schizophrenia, anxiety, substance abuse
Impairments such as neurocognitive impairments, blindness,
deafness, peripheral neuropathy, etc.
Episodic disabilities
People who care for PLHIV (old or young)
AIDS related activities limitation associated with increased child healthcare task, decreased school attendance in children, food insecurity and educational outcomes
Hanass-Hancock & Nixon, 2009; HEARD and Handicap International, Durban, 2013
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13. Handicap International
Established in 1982, a federation composed of eight national associations (France, Belgium, Switzerland, Luxembourg,
Germany, UK, USA and Canada)
Present in 60 countries worldwide
Working in disability rights, support to disabled people’s organizations, prevention & health, physical rehabilitation, social inclusion (livelihoods and education), anti-mine action and emergency
Co-recipient of the 1997 Peace Nobel Prize as a co-founder of the International Campaign to Ban Landmines (ICBL)
Recipient of the 2011 Hilton Humanitarian Prize
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14. HI’s experience in HIV and disability
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15. Twin-track approach for disability inclusion used by HI in HIV and AIDS
Handicap International and DfID, Disability, Poverty and Development, Feb, 2000, page 11.
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16. ...Also based on HI’s guide on access to services for people with disabilities....
Handicap International (2010). Access to services for persons with disabilities: Practical guide, page 19.
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17. ...And a disability inclusive and HIV programming integrated to SRH and GBV....
Handicap International (2012). Inclusive and integrated HIV programming: Policy Paper.
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18. What to keep of the African Campaign on Disability and HIV and AIDS
Co-founded by the Secretariat of the African Decade for Disabled Persons ( ) and Handicap International in 2006
An unifying umbrella composed of disabled people’s organisations (DPOs), organisations of PLHIV, NGOs, AIDS organisations, WHO, researchers and activists
Launch of the Campaign in 2007 in Cape Town, South Africa
In 2008, the Kampala Declaration on Disability and HIV and AIDS was adopted and disseminated at ICASA Dakar 2008 in French, English and Portuguese
After , many countries which were involved in the African Campaign decided to “nationalize” the Campaign at the country level, e.g. South Africa, Kenya, Uganda and Mozambique
Steering Committee of Campaign dissolved in 2010/2011 to allow full ownership of various countries who have decided to work on disability and HIV at national level
Africa Campaign on disability and HIV&AIDS:
Kampala Declaration on HIV and AIDS and disability:
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19. Good practices and lessons learned from HI on HIV and disability
In Senegal: good practice at national policy level for including people with disabilities in the National AIDS Strategic Plan
In Kenya: good practice at HIV counselling and testing level through adaptation of methodologies for increased uptake of HIV services among people with visual and hearing impairments
In Rwanda: good practice at Disabled People’s Organizations (DPO) level through organizational development leading to resource mobilisation
In Ethiopia: good practice at building the capacity of mainstream AIDS organizations/services providers on disability inclusion
In Cambodia: good practice at an individual level through a tailored initiative for rural deaf women on HIV prevention and sexual violence protection
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20. In Senegal
Part of a regional HIV and disability project (with Mali and Burundi)
Implemented in
Funded by the French Development Agency and USAID Senegal
National platform on HIV and disability to advocate the inclusion of disability in AIDS programming and policies
Adaptation of IEC material
Capacity building of services providers (VCT level)
Micro-projects on accessibility between VCT centres and DPOs
Behavioral and epidemiological study among people with disabilities in Dakar region (1.18% versus 0.7% of HIV prevalence at national level in 2011)  oral presentation of results at ICASA 2011
 Inclusion of people with disabilities in key populations in the current NSP, with clear references to human rights, HIV prevention and allocation of budget
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21. In Kenya HIV prevention for people with hearing and visual impairments
Implemented in
Funded by the Kenyan Government/WB
Awareness-raising and mass media campaign
Adaptation of IEC/BCC material in accessible format (large prints, Braille, education documentary DVD with Kenyan sign language)
Inclusion of people with different impairments in design and monitoring of adapted IEC material
Training of disabled peers to become peer educators  support and prevention
Promotion of uptake of accessible VCT services
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22. In Rwanda
HIV and disability project with integration with SGBV services
Implemented in
Funded by the Health Resources and Services Administration/USG
Organizational development of DPOs and CBOs  as a result 2 DPOs financed by the Global Funds on HIV and AIDS
Adaptation of IEC/BCC material (cross-impairments)
Capacity building of disabled people to become peer educators/support
Reasonable physical accommodation in VCT centres
Training of health/HIV service providers in sign language and on disability inclusion
Work with the MoH on disability inclusion and data disaggregation information in VCT registries  ownership and inclusion of disability in new NSP
SGBV assessment of the situation of people with disabilities:
Capitalisation document of good practices on disability inclusion:
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23. In Ethiopia
Mainstreaming of disability in PEPFAR/USAID funded mainstream AIDS organizations (PSI, PC, Intrahealth, JHU, Addis Ababa University and the National AIDS Resource Centre)
Implemented in
Funded by World Learning/USAID
Disability accessibility audit, disability focal points
TOT training on disability inclusion in HIV and SRH for health professionals
Disability accessibility action plan for health structures (adaptation of IEC material, sign language for VCT counsellors, physical accessibility)
Capacity building of service providers, relevant local authorities, media, architects/engineers
Coaching and ongoing technical assistance/support to partners
KAP surveys among people with disabilities in Addis Ababa
Advocacy and sensitization during ICASA 2011
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24. In Cambodia
HIV prevention and sexual violence protection for people with disabilities, especially deaf women in rural areas of Cambodia
Implemented in
Funded by the French Development Agency
Mapping of people with different impairments in target areas
Quantitative (KAP) and qualitative (vulnerability) assessment
Awareness-raising and HIV/SRH/GBV education and prevention
Development of Cambodian signs on HIV/sexual violence with the Deaf-Development-Program (DDP)
Cambodian sign language training to deaf women in their villages
Establishment of support groups for people with disabilities
Capacity building to and work with target Commune Councils to include disability into the commune development action plan
Linkages to health care services and GBV multisectoral services (psychosocial, medical and police/legal)
Two documentary videos (part 1 and 2) showing the process of our work with deaf women in rural Cambodia on HIV prevention and sexual violence protection:
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25. Examples of accessible products/services
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26. Examples of accessible products and facilities
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27. Some key challenges....
Still not enough evidence creation such as HIV prevalence studies among people with disabilities  lack of comprehensive national data on HIV and AIDS and disability
Though numerous funding for “vulnerable groups” and progressive increase of funding focusing on disability, still limited donors’ prioritization on this largest world minorities (around one billion people)
Scaling up of disability inclusive approach and initiatives in HIV/SRH programming
Limited partnership between AIDS and disability-focused organizations/disabled people’s organizations
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28. How to take advantage of provision of international tools and national policies?
UN Convention on the Rights of Persons with Disabilities (CRPD) (2007)  biding international tool (article 9 on accessibility and 25 on health (including HIV/SRH)
WHO/UNFPA Guidance on promoting SRH for persons with disabilities (2009)
UNAIDS/WHO/OHCHR Policy Brief on Disability and HIV (2009)
WHO/WB World Report on Disability (2011)  how to not miss 1 billion people!
UN HLM Declaration with specific references on disability/people with disabilities (2011)
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29. How to take advantage of provision of international tools and national policies?
HEARD/HI et al. Framework on the inclusion of disability in NSPs (2011)
UNAIDS Investment Framework (2011)  know your epidemic (people with disabilities are there!)
UNAIDS Issues Brief on a Strategy on HIV and disability (2012, under revision)
Capitalize on the HLM on disability and development (Sept 23, 2013) and related discussions, position papers, resolutions
... And all countries which have ratified the UN CRPD!!
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30. Opportunities and ways forwards
Support mechanisms for disability-related data collection in HIV and AIDS  as part of the national M&E system (epidemiological and behavioral information)
Support the inclusion of disability in national AIDS strategic frameworks and plans
Assist disabled people’s organizations (DPOs) to be part of national AIDS committees
Ensure signification participation of people with disabilities in decision-making processes, implementation and M&E
Promote gender equality and disability inclusion
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31. Opportunities and ways forwards
Strengthen/facilitate networking/partnership between HIV and disability at international, national and grass-roots levels
Capacity building/technical assistance of mainstream AIDS organizations on disability inclusion
Bridge the gaps between academics/researchers, disability activities and ground practitioners
Support and monitoring of the application of the UN CRPD and national laws and policies
Engage the private sector in AIDS and disability
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32. Online resources on HIV and disability
Handicap International « Ask Source » resources site:
HEARD Resource Centre:
Canadian Working Group on HIV and Rehabilitation:
UNAIDS:
UN Enable:

33. Discussion period
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34. Thanks!
Merci !