HIV and disability: Ensuring Access
Muriel Mac-Seing
HIV and AIDS/Protection Technical Advisor
Handicap International
HIV/AIDS CORE GROUP WEBINAR
September 23, 2013
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.”
What do we know so far
and always wanted to know more
about HIV and disability?
(5 min brainstorming)
Outline of presentation
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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
Some facts
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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)
Some facts (continued)
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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)
What is disability?
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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 ...”
The ICF as a model of disability
(WHO, 2001)
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
Environment
e.g. no life skills or
workplace adjustment
Participation
restriction
e.g. exclusion from
work, stigma
Personal Factors
e.g. depression, gender,
hope
Why people with disabilities are at risk
to HIV and AIDS?
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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
HIV prevalence among at-risk
populations in South Africa, 2008
35
30
25
20
15
10
5
0
African
African
males +50
females (20- males (2534)
49)
MSM
High-risk Recreational People with
drinkers
drug users disabilities
average
Source: South African National HIV Prevalence, Incidence, Behaviour and
Communication Survey, 2008
Interrelationship between HIV and
AIDS and disability
People with disabilities
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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
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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)
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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
Handicap International
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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
HI’s experience in HIV and disability
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.
...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.
...And a disability inclusive and HIV
programming integrated to SRH and GBV....
Handicap International (2012). Inclusive and integrated HIV programming: Policy Paper.
What to keep of the African Campaign
on Disability and HIV and AIDS
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Co-founded by the Secretariat of the African Decade for Disabled
Persons (1999-2009) 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 2008-2009, 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
Good practices and lessons learned
from HI on HIV and disability
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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
In Senegal
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Part of a regional HIV and disability project (with Mali and Burundi)
Implemented in 2008-2011
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
In Kenya
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HIV prevention for people with hearing and visual impairments
Implemented in 2012-2013
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
In Rwanda
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HIV and disability project with integration with SGBV services
Implemented in 2008-2013
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:
http://www.hiproweb.org/uploads/tx_hidrtdocs/RwandaSDRS05.pdf
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Capitalisation document of good practices on disability inclusion:
http://www.hiproweb.org/uploads/tx_hidrtdocs/HILessons_Learned_Collection_Strengthening
_communities_to_integrate_persons_with_disabilities.pdf
In Ethiopia
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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 2010-2013
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
In Cambodia
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HIV prevention and sexual violence protection for people with
disabilities, especially deaf women in rural areas of Cambodia
Implemented in 2008-2012
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)
Examples of accessible
products/services
Examples of accessible products
and facilities
Some key challenges....
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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
How to take advantage of provision of
international tools and national policies?
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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)
How to take advantage of provision of
international tools and national policies?
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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!!
Opportunities and ways forwards
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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
Opportunities and ways forwards
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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
Online resources on HIV and disability
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Handicap International « Ask Source » resources site:
http://www.asksource.info
HEARD Resource Centre:
http://www.heard.org.za/african-leadership/disability
Canadian Working Group on HIV and Rehabilitation:
http://www.hivandrehab.ca/EN/index.php
UNAIDS: http://data.unaids.org/Publications/IRCpub07/jc1252-internguidelines_en.pdf
UN Enable:
http://www.un.org/disabilities/default.asp?id=1560
Discussion period
Thanks!
Merci !
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HIV and disability: taking stock of the advocacy, CIP