Disability and HIV & AIDS:Overview of evidence

Nora Groce, PhDSusan Girois, MD

Strategic planning sessionThe Africa Campaign on Disability and HIV & AIDS

Cape Town, January 23-25, 2007

Overview

• Background

• What do we know?

• What do we need to know?

• Conclusions

Background

• There is small but growing attention to the AIDS and Disability issue

• The attention is so far disjointed because no forum exists that allows us to speak as a group to the AIDS community

• There is lack of coherence in the messages and the approach

« I have been approached by a disabled person here or there, but it never occurred to me that this is a

large group of people. »

--Stephen Lewis, former UN Special Envoy for AIDS in Africa

Background (cont.)

• Since 2003, increasing attention is being paid to disability links with AIDS

• Most from the disability group

• Response to the realization that people in this community are becoming infected and dying.

• Disability leaders, health providers, therapists, sign language interpreters

What do we know?

Persons with disabilities have less knowledge

– MALAWI: Effective HIV/AIDS and Reproductive Health Information to People with Disabilities (Munthali, Mvula, Ali, 2004)

– NIGERIA: Differences in HIV/AIDS Knowledge between Deaf and Hearing Populations (Groce, Yousafzai, Van Der Maas 2006)

Less knowledge– RWANDA and UGANDA: Situational analysis of

HIV/AIDS of young people with disabilities (Yousafzai A and Edouards K 2004)

– SWAZILAND: Knowledge, personal risk and experiences of HIV/AIDS among people with disabilities // Survey of HIV/AIDS Knowledge among a Deaf population in Swaziland (Groce, Yousafzai, Dlamini, Wirz 2003)

– ZIMBABWE: Knowledge Attitudes and Practices about HIV & AIDS among visually impaired adolescents and young adults (Shava K)

At risk of HIV infection

– TANZANIA (2005): Reproductive Health Needs of Visually Impaired Adolescents and pre-teens (UAFD) and Family Care International (CCBRT/CBM)

– UGANDA (2006)Baseline survey on promotion of a disability perspective into Uganda’s National HIV/AIDS response (NUDIPU)

Vulnerable to sexual violence

– ETHIOPIA: Baseline Survey on Sexual Violence against Persons with Disability in Kebele 01/02 of Yeka Sub City (Handicap International 2006)

Greater impact on FWD

– TANZANIA: The Impact of HIV/AIDS on African society – on people with disabilities- and consequently on ‘rehabilitation’ (Vanneste G CCBRT/CBM)

– ZIMBABWE: Participatory rapid assessment of the vulnerability, impact and coping mechanisms of Parents of Disabled Children on HIV & AIDS (Nganzi, Matrick, Matonhodzi (ZPHCA))

Disability community ill-equipped

– ZIMBABWE: Participatory rapid assessment of the vulnerability, impact and coping mechanisms of the disabled people on HIV & AIDS (Nganzi, Matrick, Matonhodzi(ZPHCA))

Service providers ill-equipped– SOUTH AFRICA: Survey on AIDS and Adults

with Intellectual Disabilities. Beliefs and practices on AIDS among service providers for Adults with intellectual disabilities (Tamar Levin)

– “Staff values regarding the sexual expression of women with developmental disabilities” (Christian, Stinson, Dotson (2002))

– “Sexuality education for students who are deaf: current practices and concerns” (Getch, Young, Denny 1998)

Higher HIV prevalence (???)

– TANZANIA: HIV Counseling and Testing Opportunity for 320 Parents of Children with Disabilities as part of the activities within CCBRT-CBR Programme in Dar es Salaam

Manuals, toolkits, guidelines• “Resource Manual for Disability and HIV/AIDS

Training” (DPSA)

• Manual for getting AIDS information to adolescents with disability (Rehabilitation International)

• Community-based HIV international manual for DPI South Africa (DPI)

• Guidelines for including Disability in National AIDS Programs (Groce)

Upcoming …

Groce/WHO/ILO• What you need to know about HIV/AIDS: a guide for

people with disabilities

• Disabled people’s Organizations and the AIDS Epidemic: What DPOs can do to lead the fight against HIV/AIDS for persons with disabilities

• HIV/AIDS and the Deaf Community• HIV/AIDS and People who are Blind or Vision Impaired• HIV/AIDS Information for people with Intellectual

Disabilities and their friends and families

What do we need to know?

• Sub-groups of disabled persons

• Whether our trainings are effective

• Persons with disability who are HIV+

• Programmatic issues

• Consistency in language, privacy, competency, educating health professionals

CONCLUSIONS

• Growing attention

• We have a basic situation analysis

• We now need to focus on effectiveness

• Lagging attention to PWD who are HIV+