|
www.sxmislandtime.com
HAITI - Haiti is not very hospitable to its disabled, not to the 8% with mental, physical and sensory disabilities before the January 12 earthquake, much less to the hundreds of thousands who suffered amputations and disabling injuries in the earthquake and its aftermath. Haiti has few rehabilitation professionals of its own. Most importantly, it lacks a nation-wide system for rehabilitative care.
Many developing countries have dealt with the scarcity of professional rehabilitation therapists by setting up systems of community based rehabilitation (CBR) in which individuals from each village or neighborhood (often family members of the disabled) are trained to provide basic rehabilitation services and support. CBR has been championed by David Werner, Brian O'Toole and others, and it has been shown to be effective in studies of preschool disabled children and adult stroke patients. Examples of CBR programs are those of the Three D Project in Jamaica, Los Pipitos in Nicaragua, and the Bangladesh Protibondhi Foundation.
But CBR programs are neither a cheap nor an easy fix. They require extensive community-by-community organizing, initial and ongoing training, and resources to pay modest salaries for the CBR workers. Especially with Haiti's huge numbers of complicated injuries, it is essential that CBR be tightly linked to regional centers in which rehabilitation experts develop an initial care plan and provide ongoing supervision to the CBR workers. Such programs need consistent, long-term funding and partnerships with public sector health and social service systems.
Haiti has the beginnings of such an approach - but just the beginnings. One of Haiti's few CBR programs is run by PAZAPA - a Haitian NGO based in Jacmel on Haiti's southern coast. PAZAPA focuses on children with developmental and orthopedic disabilities. Healing Hands for Haiti has a rehabilitation center and a prosthetics workshop producing artificial limbs in Port-au-Prince. (Both were severely damaged in the earthquake but are now reorganizing). Healing Hands for Haiti funnels international rehabilitation specialists to Haiti.
After the earthquake, an array of international NGOs responded, bringing in rehabilitation specialists and material aid. Handicap International is providing direct rehabilitation services and aftercare guidance for families, as well as helping to coordinate overall rehabilitation efforts as part of a UN-organized Injury, Rehabilitation and Disability Working Group, which includes representatives of the Haitian government's Ministry of Public Health and Population (MSPP) and the Secretariat for the Integration of People with Disabilities led by Dr. Michel Pean (SEIPH). This working group is not only addressing short-term rehabilitation efforts, but it is also charged with developing a physical disabilities component to Haiti's National Reconstruction Plan, with MPHH and SEIPH playing central roles.
While positive, these efforts will themselves not lead to a national rehabilitation system. Such a system will need strong central coordination. Historically, the Haitian government has been weak and largely overshadowed by what Tracy Kidder (New England Journal of Medicine 2/17/10) has termed a "parallel government" of NGOs. This situation is exacerbated by the manner in which social programs are funded: international donors, seeing the Haitian government as ineffectual and corrupt, insist on channeling aid to NGOs, earmarked for specific aid projects and not for funding long-term core operations. This creates a 'Catch-22' situation in which it is almost guaranteed that government entities that should be leading the way such as the Secretariat for the Integration of People with Disabilities and the Ministry of Public Health are under-funded and sidelined.
Haiti is now at a critical juncture. A confluence of conditions opens possibilities for significant change in the organization of human services. The earthquake and its aftermath have clearly highlighted - in the media and in the minds of government and NGO leaders - the need for coordinated, long-term systems of rehabilitation including health care and social services. In discussions with SEIPH and MSPP leaders, they articulate a shared vision of the need to build Haitian human resources and infrastructure in health and rehabilitation, of the importance of Haitian civil society organizations, and of Haitian ownership of the solutions.
Some steps that would help move toward a national rehabilitation system include:
· A commitment, included in Haiti's National Reconstruction Plan, to build a system of rehabilitation care for all Haitians with disabilities, not just earthquake-related or physical disabilities, and that the plan integrate both state-of-the-art rehabilitation medicine with a CBR model to eventually reach all corners of the country.
· Creation of a national registry of all Haitians with disabilities to both help monitor individuals' care and follow-up (including keeping track of all those evacuated for care overseas) and for global planning. Handicap International has begun a database to track those who suffered disabling injuries in the earthquake (especially amputations). SEIPH is building its own database for all disabilities. It is crucial to construct these information systems so that data collected by each NGO also flows into the Haitian government national database.
· Creation of a national Commission on Disabilities (chaired by the SEIPH), comprised of the relevant government ministries (e.g. Health, Education, Social Affairs and Labor, Commerce, Transportation), powerful leaders of society, NGO's, and representatives of the disabled community - to coordinate policy and programs related to disability - e.g. to ensure that issues of mobility and physical access, workplace rights, and education are taken into consideration as the country rebuilds.
· Movement toward a true partnership and shared responsibility between Haitian and international NGOs and Haitian government entities, in which NGO programs are coordinated with each other and fit into a national system, and in which outside funding streams are channeled in ways that build on the efficiency and focus of NGO approaches, but also support Haitian authorities and promote and build long-term Haitian infrastructures.
Jean-Claude Louis is a Haitian journalist and Regional Consultant for Panos Caribbean, an NGO that amplifies the voices of the marginalized through media
Marika MacRae is Executive Director of PAZAPA, a Haitian NGO which works with children with disabilities
Harris Huberman MD MPH is Director, Division of Child Development, Department of Pediatrics, SUNY Downstate, New York City and Operations Coordinator for the Central America Caribbean Initiative for Childhood Disabilities (CACIC Project )
|
