DISABILITY AND HIV/AIDS

ACHIEVEMENTS AND CHALLENGES IN BARBADOS

In accordance with one of the objectives of the last Supervision Mission of Barbados’s HIV/AIDS Prevention and Control Project (May 2 to 5, 2006) the World Bank met with the Government and other relevant stakeholders to jointly review the achievements and challenges in mainstreaming disability into HIV/AIDS prevention and control.

The Bank has recognized the relevance of building internal technical capacity in Disability & HIV/AIDS, and is concerned on how this is address in its projects. Given that Barbados has been at the forefront of prevention and control of the epidemic, learning about the initiatives in the country to tackle this issue provides a valuable insight in to the main achievements, opportunities and actual challenges in reducing the transmission and impact of the virus on persons with disabilities.

  1. Main Achievements

During the visit the following achievements were identified:

I.a. Public Sector

The first remarkable fact noted is that since the very beginning of the project the Government has had allocated specific funds to address the issue of HIV/AIDS and disabilities. The National HIV/AIDS Commission provided the National Disabilities Unit with sufficient resources to undertake initial actions in this field.

The allocation of resources to this issue clearly indicates the Governmental understanding of the actual risk being faced by the disabled populationas it relates to the HIV-AIDS pandemic. Accepting that disabled people are at risk of getting infected by STD is still one of the biggest challenges to be faced, not only in the region, but worldwide. The Government’s recognition of this apparently “simple fact” and of the correlative need to include disabled people in the HIV-AIDS outreach efforts in the country is extraordinary, and leaves Barbados in a privileged situation in comparison with the rest of region.

One of the relevant results of this approach has been the recent design of a first strategyprogram;the “HIV/AIDS and Sexuality Awareness Programme for Persons with Disabilities”, which is expected to run in the period of April 2006-March 2007, under the coordination of the Disabilities Unit.

In order to reduce the incidence of HIV/AIDS among disabled people, and having identified the urgent need of changing cultural and family perceptions regarding sexuality and sex related risks for the disabled; the Programme aims to educate persons with disability and their families/care givers on the HIV/AIDS epidemic and empower them with respect to relationships and sexual practices. To develop the activities the Unit operates with an estimated budget of B$51 795.

Given the marginalized conditions of the population with disabilities in the Region, the Government’s efforts are noteworthy. The awareness and allocation of resources together with the existence of a working plan and the identification of some of the challenges to face while addressing this issue, gives Barbados a great advantage in successfully pioneeringthe outreach activities targeting this population.

In this context it is also relevant to mention the Government’s commitment to the disabled community in the country and to the improvement of their current problems. This commitment is manifest in both the governmental financial support to the disabled umbrella organization and also on the recent creation of aNational Advisory Committee on the Rights of Persons with Disabilities, composed of relevant stakeholders including persons with disabilities. The Committee is intended to monitorthe progress made in the implementation of the programmes, policies and activities as outlined in the White Paper on Persons with Disabilities. This body may become a fundamental tool for engaging in a process of mainstreaming disability issues in the public policy agenda, including public health.

I.b. Private Sector

The Barbados disability sector is very well organized. There are several organizations of and for persons with disabilities, both cross disability and specific to one type of disability.

One of the biggest achievements of the sector is Government’s financial support and the coordinated work facilitated by the Barbados Council for the Disabled (BCD), an umbrella body for 19 organizations. As part of BCDgeneral accomplishments and resources they have managed to:

-Operate in a newly reformed and perfectly equipped building

-Hire five administrative staff members.

-Provide special services for the disabled community.

-Acquire two wheelchair accessible vehicles.

-Facilitate the organizational work of its member’s organizations.

-Advocacy and public awareness campaigns.

The BCD and its organizations are highly aware of the vulnerability and risks of persons with disability as it relates to HIV&AIDS. They have identified the majority of the challenges faced as well as some of the strategies on the way forward, both for public and private (personal/family) settings.

They seem to have the knowledge and technical and human resources to serve as an advisor on disability related issues, such as ways to tailor materials and messages to make them accessible to persons with physical and sensorial impairments (mobility reduced, blind and deaf people).

They have a clear perception of the need of interdisciplinary approaches in this issue, and although they advocate for the participation of disabled people and their organizations while designing and implementing an inclusive campaign on HIV&AIDS, they also realize that professional support is necessary, particularly when dealing with intellectual disabilities.

Through its work the BCD has created an important networka map of actors and resources, which may allow them to identify professionals with expertiseon the different disability related areas. These professionals or resource centers may as well provide the Council with special technical support/knowledge while addressing complex disability related issues.

The BCD is also in contact and shares information with other international DPOs (Disabled People organizations) and Disability Networks that may provide more technical knowledge and good experiences on how to better deal with the issues of access to information and communication for the disabled, among others.

It is also relevant to mention that currently the BCD plays a significant role in advocating for the rights of PWD in Barbados and so far has encountered a good reception to its initiatives in the public sector. It has a strong and determined leadership and has gained its seat as chair of the National Advisory Committee on the Rightsof Persons with Disabilities.

  1. Main Challenges

As stated, Barbados currently has a significant background that will favor further development on the issue of HIV/AIDS & Disability. To do so it is important to bring the attention to some challenges that the country may face in its way forward. Some of those challenges have been clearly identified by the relevant stakeholders and may be presented as follows:

II.a. Public Sector

Lack of skills/human resources. Even though the Government’s Disabilities Unit has developed some efforts to address the theme of HIV&AIDS among their direct beneficiaries, it has also faced big obstacles in undertaking the designed activities, mainly due to the lack of human resources and skills. Its personnel are well qualified for their regular activities, but have encountered bigger challenges on tackling the HIV&AIDS issue. It is not their area of expertise; they have no previous engagement with the issue and have no formal training on dealing with it. They have no experts on HIV or sexuality nor do they have them on tailoring materials and messages or in how to approach their beneficiaries wisely and effectively. There is a need of supporting the Unit’s internal technical/knowledge capacity.

Strengthen the coordination among governmental bodies. As it is necessary to coordinate among the different Ministries for the National response on the pandemic, there is a need to relyon the diverse areas of expertise on the relevantgovernmental agencies while dealing with the disability related approach. One of the biggest challenges in this field is to develop a coordinated plan that would take into consideration, educational, cultural, social, and health issues. In order to achieve that, the active participation of representatives from the MoE, MoST, MoH and the National Commission on HIV, is crucial.

Increasing civil society participation and interdisciplinary work. The governmental response on disability must be enhanced by the participation of DPOs and other relevant stakeholders. Persons with disabilities and their organizations have developed a high level of expertise as it relates to their needs to access different public services and are an important ally in outreaching all different sectors of disabled persons.

Other relevant actors, such as professionals from different backgrounds and other civil society organizations may provide technical support and examples of best practices being implemented in other sectors that may be tailored to improve the disability based approach.

Including disability related issues inthe public outreach efforts. Even when concrete and specific measures are needed in order to outreach the disabled population, (specially those facing severe disabilities), a mainstream approach may be necessary in order to achieve the necessary changes on disability related perceptions and cultural behaviors. It is crucial to broaden the outreach scope of any initiative developed in this area. Avoiding segregated or exclusionary approaches may help overcoming the general stigma and the ignorance on the theme. National efforts on prevention and control must include disabled populations among their regular target population. The challenge lies in on making the general national efforts accessible to everybody.

Coordination, Sustainability and Evaluation. May be the biggest challenge of all. How to continue with the efforts to generate a coordinated, integrated, cultural wise and sustainable strategy to address Disability in the National HIV/AIDS efforts? How to get the different governmental, sector and interdisciplinary actors involved in the process? Who is capable and responsible of doing so? Who is responsible for the follow up and how would the advancements be measured?

II.b. Private Sector

Some of the challenges to be faced by the civil society groups working on disability while addressing the issue of HIV&AIDS, were identified as follows:

  • Increasing their collaboration and involvement with the HIV/AIDS sector. Disabled people organizations so far have had little or no relation with other relevant HIV/AIDS stakeholders, both in the private and in the public sector. It is important to establish ways of exchanging knowledge and expertise among the sectors, both to enrich the level of knowledge in the area of HIV and disability, but also to influence the HIV/AIDS sector outcomes by showing the relevance of including disabled individuals among their beneficiaries.
  • Participating in the design and implementation of a national initiative on Disability and HIV/AIDS. People with disabilities and its organizations must work in close collaboration with policy makers while designing and implementing a strategy to include disability issues in the National HIV/AIDS response. This will require a major effortand technical capacity must be developed among their various representatives. The private sectoralso may not have enough human resources to participate in all different stages of the process.
  • Lack of human and financial resources. Given that the BCD has only four staff members, their taskforce contains many volunteers. That fact limits their permanent and structured participation. To be able to provide the assistance and technical collaboration needed in this field, human resources must be granted.

In addition resources are needed to design tailored information and communication materials for PWD, especially for those being designed for Persons with intellectual disability.

  • Addressing Intellectual Disabilities.The main challenge rests with intellectual disabilities. Due to the lack of specialized technical capacity on severe intellectual disabilities, the BDC cannot address this issue. They don’t have enough technical/professional resources to design the adaptations and accommodations to make information available in adequate formats. This will require extensive work and the strong involvement of several professionals and stakeholders (special education specialist, psychologists, parents, persons with intellectual disabilities, among others)
  • Improving their technical capacity in the area of HIV/AIDS. By learning more about the impact and effects of HIV and making the link with the situations that may increase the risk of PWD of getting the infection.
  • Dealing with cultural issues. Facing double stigmatizationperceptions about the asexuality of persons with disabilities by caregivers and service providers. Risk of having approaches on HIV/AIDS and Disabilities oriented towards sexual abstinence.
  • Lack of collaboration among the different organizations.The sector is facing division and power struggle even when they are all fighting the same cause. However they believe that in order to strengthen its voiceavoiding overlapping and unnecessary conflicts, DPOs must work in close collaboration and unity.

III. Preliminary Conclusions

Considering the achievements mentioned above Barbados may be ready to move from an awareness raising approach to a concrete set of programmatic activities. However, to better address the main challenges identified and to be able to move forward on the programmatic level, there are still a few points that may be worth considering by the respective authorities.

Meeting needs and resources. Together the Government and the private sector have a considerable amount of technical and financial resources to start working on a strategy to address HIV-AIDS & Disability. However the existent resources may have not been utilized at their maximums extend, due to little coordination among the sectors. One sector is not aware of the existent resources of the other and vice versa, and while one’s sector resources may be insufficient to address the needs in this field, the combination of both sector’s resources may me adequate enough.

It could be observed that on one hand the government has; knowledge and expertise on HIV/AIDS prevention and control strategies, financial resources, a Disabilities Unit that may be able to identify beneficiaries and the cultural challenges to address them. On the other hand the private sector has; a good network of Persons with Disabilities and DPOs, and technical knowledge in Disability (and/or the network to locate them), but lacks human and financial resources to fully undertake the necessary efforts in this field.Could the Government allocate some of its resources to let them further develop their skills?

Some other questions may arise at this point: How to better use the existent resources?Could the existent resources be redistributing? Would it be possible to facilitate governmentalefforts by using private sector resources and vice versa? How can we bring the Barbadian’s technical capacity, human and financial resources together to support a National effort in this field? Could it be an additional allocation of resources, where necessary?

Coordinating a multi-sectoralapproach. Coordinating the use of the existent resources would most probably lead to strengthen the collaboration among the public and the private sector. Multiple governmental agencies and civil society actors may be involved in this process. This multi-sectoral and interdisciplinary approach would most certainly benefit the process outcomes. By guarantying the inclusion of diverse stakeholder’s perspectives and inputs, the final results will presumably reflect a complete map of concerns and possible solutions regarding the HIV pandemic and its effect on the disabled population.

In this context active governmental coordination is crucial. Governmental leadership would help convening diverse actors to work in unity to achieve the goal. This governmental lead role would reinforce the importance of the issue as it relates to stopping the spread of the virus in the country and would allow the development of more effective and comprehensive measures in this regard.

Achieving an active and significant interaction among the diverse actors should require a special effort. Would it be possible to integrate them in a working group? Would the Government convene and coordinate such a body?

An opportunity to mainstream.

The participation and leadership of different government agencies, such as the MoE, MoH and the National Commission in the process creates a tremendous opportunity to together with the rest of the initiatives being developed on the HIV/AIDS sphere, nationwide.

In addition to the efforts being undertaken to design separate outreach initiatives specifically targetingdisabled individuals, governmental efforts may also cover the inclusion of the disabled in general HIV/AIDS outreach efforts. A combination of strategies would begin to reach a significant portion of the disabled community. Would it be possible to integrate the theme under the National Plan of Action?

The World Bank’s further role.

At the Government’s request, the Bank may continue providing technical collaboration when necessary, also and if it is decided to go ahead with the creation of a working group, the Bank may help developing its terms of reference.