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Needed: A Rehabilitation System for All Disabled Haitians

April 9, 2010

By Jean-Claude Louis, Marika MacRae &Harris Huberman

March 6, 2010: 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.

A young Haitian girl who has had a section of her leg amputated after being injured in the January 12th earthquake which killed an estimated 300,000 people. Approximately 150,000 persons had one or more limbs amputated due to severe injuries caused by falling debris.

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.

This video explores some of the difficulties that Haiti’s new amputees face

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)

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One Comment leave one →
  1. ium permalink
    November 20, 2010 6:05 am

    Dear Friends,

    DEF is a non-governmental organization working for the development of the disabled and women since 2004. As you know that people of Pakistan are suffering with flood disaster. A lot of relief work being done by Government level as well as NGOs and private sector level but it is observed by DEF team in a survey that mostly the beneficiaries are normal people specially men who can access to the distribution points or relief camps but the women and the people with disabilities are being ignored. So we decided to work with up given segments of the society. DEF appreciate your work for the betterment of the humanity to bring a change to the world. Enclosed are the details of the DEF relief work. We would like to receive a feed back from your organization and we hope that our relation will go on long terms to make world a better place.

    We hope to receive an acknowledgment.

    Regards
    Irum Naz

    Disabled Empowerment Foundation (DEF)
    Toba Tek Singh (Punjab, Pakistan)
    Cell: 0333-6871022
    Site: http://defpak.webs.com

    Email us: defpak@yahoo.com

    defpak@live.com

    Phone: +92-462009090

    462510868

    Floods in Pakistan

    Emergency Response Program for persons with disability in Pakistan.

    BACK GROUND:

    Floods in Pakistan hit vast areas of Pakistan affecting over two million people across the country. Flash floods devastated houses, standing crops, livestock, roads and other infrastructure. Millions migrated to safe places however large number of people stranded in water among them were persons with disability and livestock. However before any major mishap the above mentioned segments of life were neglected in relief operation by government, local and International aid giving organizations.

    Disabled Empowerment Foundation (DEF) established in 2004 to empower persons with disability in the city of Toba Tek Singh. It has been making known the convention of the rights of persons with disability. It has a vision to create a better world for persons with disability. The following activities have been conducted.

    · Educating opinion makers on the Convention of Persons with Disability

    · Working with government social welfare department to issue the disabled certificate from the government. The certificate official indicates the kind of disability and the certificate holder is given special benefit from the government. Since the process is complicated for a person with disability and he/she finds difficult to processed.

    · Special events are organized to draw the attention of the society to respect and work for the persons with disability.

    · Educating parents on the methods to deal with special children.

    RESPONSE PROGRAM FOR PERSONS WITH DISABILITY:

    DEF planned to initiate Emergency response program for the persons with disability.

    DEF made several assessment visits to various flood hit areas in South Punjab to start a response program. It found the followings

    1. Rescue and relief from NGOs, government and International organizations was handed out to men.

    2. Children, women and particularly persons with disability were not taken care of.

    3. Persons with disability had no access to distribution points so they remained dependent and starved and suffered a lot for displacement.

    4. Persons with disability were badly ignored.

    5. In many cases DEF found people like unconscious.

    6. DEF made contacts with Flood Control room and district administration to obtain the data of the flood hit disabled. However the government failed to provide any data in the flood hit areas or people spread in different clusters.

    7. District Jhang and Layyah are closed to Toba Tek Singh (DEF is located in Toba Tek Singh central Punjab)

    8. DEF assessment team made urgent survey to register the persons with disability in different clusters of the above mentioned districts.

    9. In the meantime DEF launched flood relief camps in district Toba Tek Singh in the centre of public place to create awareness and fund raising for the flood hit persons with disability of Layyah and Jhang.

    10. DEF registered 246 persons with disability in District Layyah and 268 in District Jhang.

    DEF EMERGENCY RESPONSE PROGRAM:

    DEF planned to facilitate 1000 families in District Jhang and Layyah with relief packages. The criteria to nominate families were women and people with disabilities. Each flood hit family in flood hit areas was given a registration and they were issued cards from DEF to collect relief package. The Package is as below,

    Ration for 15 days including wheat flour, cooking oil, sugar, rice, lentils, clothes, beddings, utensils etc each package costs Rupees eight thousand which makes US 100 $s. the package was also included hygiene kit which was comprised of anti-germ hand washes, soaps, dish wash bars, detergent powder and dettol bottles to avoid expected epidemic diseases.

    Each distribution was made in government institutions and in presence of media, government and other social change agents so they may draw the attention of the public to support the persons with disability.

    There were suggestions to distribute package at the door steps of the persons with disability, however to avoid any uncertainty and smooth flow of the package the distributions were organized in government institutions and beneficiaries were provided food and fare. The pictures are attached with to show the extreme situation of the persons with disability hit by floods.

    Stories:

    Muhammad Aslam 26, Mouza Dolu Nashab, Lohanch Nashab, District Layyah, said, “When the flood news spread in my village, each one tried to reach on safe places. My family members were trying to save first the families who were normal and ration and livestock. Nobody thought of me. I cried and my mother helped me to sit over the donkey.

    When the family was walking through the flood water, I was not sure that we will reach to some safe place, however, walking twenty to twenty five miles, we were managed to reach dyke. For days, I remained still uncertain weather, I will remain alive or not as there was no relief coming in. My brothers and other families went in search of food and tents but they failed for next few days.

    The government air lifted the food article which was difficult for person like. I thanked God when I met team members of DEF. When they interviewed, I got relieved. They registered me to support my whole family through me. When my family came to know beddings, ration and other relief will be given because of me, they all apologized for not been so caring to my needs.”

    Musarat Mia, 46 from Pir Abdul-ul-Rehman, Tehsil Ahmad Pursial, District Jhang, has two young girls mentally retarded. The young girls are 17 & 19. The family was not registered during the survey as they were shifted to their relations. When the water was receded, the family came and when DEF organized its fourth distribution.

    Musarat Mai came to distribution and asked to include her daughters. The team leader refused as they saw she was not registered and had not visited her daughters. On refusal, the women went some 30 miles and brought her two young daughters walking like animal. They did not have any support like wheel chairs. Their clothes were dirty and foot and hands were badly injured for traveling. The girls hardly traveled a couple of weak.

    Team of DEF met with a 72 yrs old woman who got injured in flood disaster. She told us that when she was running to save her life with her family, she struck with something and fell on the road, meanwhile a truck came to the road and crushed her right foot badly under its giant tyres, she was badly hurt and her family somehow managed to take her to some safe place but not having any kind of access to medical facilities, the wound could not be cured and she lost her foot and now dependant on her family to move around.

    FUTURE PLANS:

    Relief activities are almost done and it is time to work on rehabilitation work on sustainable bases. DEF intends to provide medical facilities to the people who have already some kind of disabilities or got disabled in flood disaster. Given below would be the DEF priorities.

    · providing roofs to the disabled to help them to arrange proper shelters as the winter season is about to start even in some areas of Pakistan it is already started and the people are forcely living under the open sky

    · Facilitate the most needy people with disabilities with wheel chairs, crutches, hearing aids and if needed also with physiotherapy treatment.

    · Organizing medical camps to provide vaccination to the women and people with disabilities to avoid epidemic diseases spread out due to flood water

    · Advocacy & lobbying with local government body as well as on media level to highlight the issues and value recognition to the disabled

    · Conducting awareness seminars on epidemic diseases and reproductive health for mothers

    · Income generating program with women and mothers to enable them to look after the special family members in a better way

    · Capacity building and skill development programs for the disabled to make them a confident, independent and productive member of the society

    · Equipping children with disabilities with standard education to give them a bright future.

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