Where Are Children and Youth with Disabilities in the HIV/AIDS Paradigm?

The Convention on the Rights of Persons with Disabilities and its Optional Protocol entered into force on 3 May 2008. It is the first comprehensive human rights treaty of the 21st century. According to the UN, the Convention, “takes to a new height the movement from viewing persons with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society. The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.”

 

Most donors have disabilities as a cross-cutting issue and may have policy documents as well. For example, USAID has a People with Disabilities policy. However, a literature review and recent conversations with a variety of stakeholders in four countries affected by HIV/AIDS show that children and youth (and adults) with disabilities in an HIV/AIDS context are largely invisible from programming foci and there is a limited evidence base on which to consider strategy and project development and to make interventions disability-friendly.

There is credible scientific evidence that the virus causes disabilities as well. A review of 54 studies (largely undertaken in North America) found that 81 percent of the studies:

 

“reported a detrimental effect on neurocognitive development, however measured, whilst three reported no differences and four had mixed findings. Thirty-three percent provided data on child gender, but only 8% went on to analyze data according to gender. The numbers are too small for definitive findings, but it is of note that three quarters found no gender differences. There seems to be some evidence of detrimental effects of HIV infection and exposure on cognitive development.”1

 

In addition, if the child’s parent(s) has a disability, there are even greater risks for the child since these adults are an unaddressed group within the population living with HIV/AIDS—both in terms of prevention and treatment.

 

According to international data on school participation, the vast majority of children and youth with disabilities who live in the developing world are not in school and the opportunities for even informal learning let alone being able to participate in formal and non-formal settings are limited.2  In the education sector, these learners represent the ‘last mile’ in many countries’ achievement of Millennium Development Goal 2 (Achieve universal primary education) and Education For All. Education has been demonstrated to essential and influential in the fight against HIV/AIDS.

 

But children and youth with dsiabilities are compromised in terms of equitable access to education in general and compromised even further with respect to HIV/AIDS information, prevention and treatment.3 Will these learners represent the 'last mile' in achieving a generation free of HIV/AIDS?

 

Considering disabilities in a non-HIV/AIDS context is complex enough; in an HIV/AIDS context, it becomes even more daunting.  Children and parents with disabilities who are affected in some manner by HIV/AIDS are marginalized and under-served within the overall HIV/AIDS-affected/infected population and are largely unable to access intended assistance. Gaining insights into and starting to address the area of disabilities and HIV/AIDS now is imperative.

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