HIV and disability: Ensuring Access

Muriel Mac-SeingHIV and AIDS/Protection Technical Advisor

Handicap International

HIV/AIDS CORE GROUP WEBINARSeptember 23, 2013

For the first time inUNAIDS’ Strategy 2011-2015…

“When social support and other programmesfor persons with disabilities are delivered in

an HIV-sensitive manner, they contributeto 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 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 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) 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?

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

Activity limitation e.g. not able to see

and read

Impairments e.g.blindness caused

through TB treatment

Participation restriction

e.g. exclusion from work, stigma

Environmente.g. no life skills or

workplace adjustment

Personal Factorse.g. depression,

gender, hope

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

HIV prevalence among at-risk populations in South Africa, 2008

Source: South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008Source: South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008

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)

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

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

Hanass-Hancock & Nixon, 2009; HEARD and Handicap International, Durban, 2013

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

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.

Handicap International (2010). Access to services for persons with disabilities: Practical guide, page 19.

...Also based on HI’s guide on access to services for people with

disabilities....

Handicap International (2012). Inclusive and integrated HIV programming: Policy Paper.

...And a disability inclusive and HIV programming integrated to SRH and

GBV....

What to keep of the African What to keep of the African Campaign on Disability and HIV Campaign on Disability and HIV

and AIDSand AIDS Co-founded by the Secretariat of the African Decade for Disabled Co-founded by the Secretariat of the African Decade for Disabled

Persons (1999-2009) and Handicap International in 2006Persons (1999-2009) and Handicap International in 2006 An unifying umbrella composed of disabled people’s An unifying umbrella composed of disabled people’s

organisations (DPOs), organisations of PLHIV, NGOs, AIDS organisations (DPOs), organisations of PLHIV, NGOs, AIDS organisations, WHO, researchers and activistsorganisations, WHO, researchers and activists

Launch of the Campaign in 2007 in Cape Town, South AfricaLaunch of the Campaign in 2007 in Cape Town, South Africa In 2008, the Kampala Declaration on Disability and HIV and AIDS In 2008, the Kampala Declaration on Disability and HIV and AIDS

was adopted and disseminated at ICASA Dakar 2008 in French, was adopted and disseminated at ICASA Dakar 2008 in French, English and PortugueseEnglish and Portuguese

After 2008-2009, many countries which were involved in the After 2008-2009, many countries which were involved in the African Campaign decided to “nationalize” the Campaign at the African Campaign decided to “nationalize” the Campaign at the country level, e.g. South Africa, Kenya, Uganda and Mozambiquecountry level, e.g. South Africa, Kenya, Uganda and Mozambique

Steering Committee of Campaign dissolved in 2010/2011 to allow Steering Committee of Campaign dissolved in 2010/2011 to allow full ownership of various countries who have decided to work on full ownership of various countries who have decided to work on disability and HIV at national leveldisability and HIV at national level

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

In Senegal 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

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 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

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

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 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....

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?

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?

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

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

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

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/IRC-pub07/jc1252-internguidelines_en.pdf

UN Enable: http://www.un.org/disabilities/default.asp?id=1560

Discussion period

Thanks!

Merci !