HIV/AIDS PDF Print E-mail

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Background

With regard to HIV/AIDS, KSMH seeks to enhance supported access to HIV/AIDS services for persons with intellectual disabilities. The main objective of this programme is to increase sensitisation of HIV/AIDS Prevention and Treatment Services through home-based community outreach events. KSMH will develop behaviour change communication such as radio programmes and IEC materials to target PWIDs living with HIV and their families on Anti-Retroviral Therapy (ART).

Problem Analysis

Persons with intellectual disabilities are faced with many challenges both congenital and acquired, the most outstanding being their inability to develop basic social life skills and to make rational decisions on their own, leading to poor judgment in situations requiring rational thinking and inability to make decisions on matters as important as their sexuality and reproductive health. This problem is particularly worse for women and girls who are already disempowered by society, gender inequalities abound everywhere in most African Societies.

By virtue of their condition, PWIDs are exposed to a much greater extent to the risk of HIV infection than the rest of the general population. Their inability to make independent and informed decisions makes them highly vulnerable and exposes them to the risk of sexual abuse and exploitation, which increases the probability of infection and re-infection with STIs and HIV/AIDS. This is further complicated for the girl-child and women, through for instance, unwanted pregnancies, and frequently giving birth to babies with HIV as a result of the added risk of mother- to-child transmission during delivery or exposure through breastfeeding.

A false belief that PWIDs are not sexually active is another common contributing factor to the rise in their abuse and infection without commensurate intervention and outreach.
There is also lack of individualized approach in delivery of HIV/AIDS prevention, counselling and ART services for this particular population.

Rape and incest are common forms of sexual abuse and exploitation involving PWIDs within the family set up. This is usually concealed due to the shame, taboo and stigma attached to mental disability. Again, the identification of those exposed to the risk of HIV/AIDS infection is fully dependant on second parties and/or secondary signs such as pregnancy or presented STIs. The confinement of persons with intellectual disabilities to their homes and institutions deny them important access to HIV/AIDS services. Their families’, care-givers and community lack the necessary skills for the identification and provision of HIV/AID intervention services. In rare cases when efforts are made, PWIDs are taken to hospital (the only place their status is likely to be discovered), only as a last resort and good riddance as in majority of cases. The PWIDs are usually regarded as a burden. Consequently, cases of infection among PWIDs are discovered too late for any corrective support.

Furthermore, policy guidelines and the law as it currently stands excludes this section of population classifying them as persons of “unsound mind”, leading to national and other HIV/AIDS programs that do not recognize supported consent by PWIDs. Supported consent is a case whereby trained and certified human readers or care-givers receive and interpret information on a PWID’s behalf, provide and receive feedback and advise service providers on the subsequent course of action in the provision of counselling, testing services and ART. When working with a PWID it is important to grasp that each individual may use their own unique augmentative or alternative mode of communication. Therefore, a PWID requires their own individual human reader who comprehends this unique method of communication that they employ. Human readers do not speak on behalf of a PWID, but act rather as a support system and interpreter for the PWID, and consequently play a vital role in the sensitisation of PWIDs and assist in any subsequent decisions made regarding the uptake of counselling, testing services, and ART.

Factors influencing HIV/AIDS progression among PWIDs include:-

  • Dis-empowered community members who cover up cases of sexual violation that expose PWIDs to HIV infections and re – infections.
  • Poor reporting channels for identification and reporting of PWIDs in need of HIV/AIDS interventions.
  • Lack of resources to enhance the role of PWID supportive institutions in coordinating the provision of HIV/AIDS services to PWIDs.
  • Limited social support and interventions either directly to the affected PWID or through their guardians.
  • PWID’s inability to voluntarily and independently access HIV/AIDS services due to the nature of their disabilities.
  • PWID’s poor compliance to ARV treatment since they depend fully on the support of human readers who often are not trained on ARV adherence or are pre-occupied with other socio-economic activities lacking commitment of quality time on PWID.

Justification

Most HIV/AIDS programmes by the government and NGOs fail to provide specialized interventions for persons with intellectual disabilities (PWIDs). They have also failed to recognize this “most at risk population” of persons with intellectual disabilities often exposed to infection and re-infection through sexual exploitation that is often concealed by family and community. KSMH has been providing supported identification and individualized HIV/AIDS treatments, for persons with intellectual disabilities. The focus has been Nairobi, Thika and Maragwa districts where the organization has experienced increasing demand for additional intervention services. This program proposes to offer PWIDs increased and expanded interventions and supported access to HIV/AIDs information and services for the hard to reach population of persons with intellectual disabilities in Kenya.

It will promote identification of those exposed to the risk of HIV infection; increase prevention of new infections among PWIDs; and provide supported access to HIV/AIDs information and services such as counseling, testing and treatment. It will also aim to raise awareness for increased exposure and visibility of PWIDs, targeting the public with awareness on available HIV/AIDS services for persons with intellectual disabilities. It will increase sensitization and awareness of the public on modes of supported identification and individualized access to HIV/AIDS interventions services by PWIDS in the country. It will also endeavour to increase the number of human readers and care givers with relevant skills to support PWID access to HIV/AIDs sensitization, awareness, prevention care and treatment services.

As a spin off effect of this program, it is expected that at the national level it will influence recognition of persons with intellectual disabilities in the HIV/AIDS policies that include VCT guidelines and ART guidelines – and overall HIV/AIDS programming. Overall, the programme hopes to increase access to HIV/AIDS intervention services for WHO’s estimated 75% of disabled Kenyans with intellectual disabilities in Nairobi, Maragwa and Thika districts. (WHO, KSMH)
 
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