QUESTION
OF THE
MONTH

Each month CIP invites an expert to pose an important question dealing with some aspect of inclusive policies.


We then invite all of you to participate in an on-line written discussion. At the end of the month, our expert will summarize the main results of that discussion in a blog. If you would like to pose a “question of the month” please write to us on our contact page.

THIS MONTH’S QUESTION

How can we best provide community supports in low- and middle-income countries?

THIS MONTH’S CURATOR

ALBERTO VASQUEZ

is a Peruvian human rights lawyer and disability rights advocate.

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    • #4695 Reply

      Supporting one another is an intrinsic element of community life. While some forms of support are taken for granted and naturally embedded in society, this is often not the case for disability-related support, such as services or devices for communication, mobility, self-care or decision making. For many people with disabilities, access to such support is a precondition to live and be included in the community, and yet it is almost non-existent in low- and middle-income countries (LMICs), which increases their likelihood of living in poverty, experiencing violence and neglect, and being denied legal capacity. In fact, in most LMICs the main source of support are families and caregivers who provide such support informally and with a significant impact on their income and opportunities.

      Against this background, we would like you to share your views and ideas on how support services can be developed and delivered in low- and middle-income countries?

      This is our first ever discussion forum and we are looking forward to hear from you!

    • #5060 Reply
      Joseph Walugembe
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      Community volunteers’ structures can potentially be energized to provide supports for people with disabilities. Volunteers like Members of Village Health Teams, Para-social Workers and Paralegals who have proved effective in mobilizing    communities for vaccination, following up on cases of domestic violence etc. may also be appropriately trained and coordinated to provide some form of supports to people with disabilities. For example, they may ensure that people with mobility needs   are supported to travel to public meetings.   They could be trained in making mobility devices from locally available resources.   Community Based Rehabilitation (or community Based Inclusive Development) strategies can be utilized   through the structured of community volunteers.

      Informal groups which   are either a requirement; or a result of Programs of Non-governmental can be leveraged to provide supports for people with disabilities  if the  sponsor of the program is  interested in disability inclusion.  For Example, the Stromme Foundation has a program known as “bonga” aiming at promoting dialog and    functional literacy skills among      Adolescent girls. The program   has a component of forming Bonga   centers. Members of the Bonga centers   can be further trained/mentored   to provide su9pports   beginning with their peers with disabilities and eventually rolling out the support system to entire communities.

      • #5224 Reply
        Alberto Vásquez
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        While I agree with the need of community mobilisation, I also wonder which lessons can we learn from the shortcomings of CBR programmes to ensure service provision. Evaluations have been particularly critical on the issue of sustainability. How do we scale up?

        Alberto

    • #5192 Reply
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      Joseph, I think it is a good idea to build on those structures but for supports to be available to everyone there has to be a systematic buy-in from the government — maybe to marshall, organize and fund those structures. I don’t think a web of informal groups can get us to complete coverage.

    • #5242 Reply
      Shivani Gupta
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      In LIC the family is responsible for providing support to persons with disabilities and this is socially and often legislatively instilled. Moreover, there is a gender perspective where it is the women of the family who provide support.

      While the significance of informal support provided by the family cannot be undermined, studies show that there are adverse social, mental, and physical health effects on both the support provider and receiver in the long term.  Therefore there is a need to look at culturally appropriate models of support in the community for persons with disabilities that are economically viable and acceptable to the users.

      I feel that the initial efforts towards creating community support services have to be basic that create the foundation for a strong system that considers community support as a right and a precondition for the inclusion of persons with disabilities. These may entail having a

      • Strengthening the legislative framework in LIC to address community support not from a ‘care’ perspective where persons with disabilities are silent recipients of care that is adequate only for survival, but from a ‘rights’ perspective where support is available to them to live a more self-determined life.
      • Creating a cross-disability model of community support that can be improved with feedback of support users and providers, showcased to the governments who can then replicated. Creating such models may require strengthening community-based programs which, in collaboration with the government and the community can create respite care and other models of community support. There are good practice models that exist but they may be disability-specific. Therefore bringing many models together to create a large cross-disability model may be required.
      • Community-based programs may also run community awareness programs on disability and community support, focused on how the lives of persons with disabilities and the family ‘caregivers’ can be improved. Also increasing self-awareness projects of persons with disabilities who most often accept the survival mode they live in not knowing what may be better.

       

      • #5249 Reply
        Joseph Walugembe
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        Alberto, I entirely agree with you! Government has to be at the center  of the effort to  provide supports  for people with disabilities and public resources mut be equitably  appropriated  for services  that promote participation and inclusion of people with disabilities. In Low and Medium  Income countries  however; where  government  face capacity  issues  in establishing   formal systems,  informal community  structures   could be leveraged. Informal structures however only work  well and deliver sustainably  with technical  backstopping and financing  from  government.

    • #5243 Reply
      Shivani Gupta
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      I would agree with Joseph on the role CBR/CBID/community-based programs can play in creating community support. I feel the role they can play needs further investigation. They, however, need to be supported by the State to increase the reach and quality of such programs. Such collaboration between the program and the State is not happening in all LIC.

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