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Community efforts towards addressing the needs of persons with disabilities in Niger BACKGROUND Individuals with disabilities in Nigerien society are often shunned and deemed unable to contribute to society. As a result, children born with disabilities or who later become disabled are not schooled, not trained in traditional ways of employment, and are permanently cared for by their families or often end up begging on the streets. Niger is a vast country with a small population of approximately 17 million. It is landlocked, mostly desert, with a population that is primarily Muslim (96%). The poverty rate is extremely high: Niger was designated the poorest country in the world in 2015 (UNDP). Health infrastructure is basic and concentrated in urban areas, while approximately 75% of the population lives in rural regions. Common types of preventable or treatable disabilities include: Blindness, associated with vitamin A deficiencies Cataract associated blindness Club foot Polio (almost no recent cases) Consequences of motor vehicle accidents Poorly treated injuries Consequences of traditional medicine or treatments Some disabilities associated with pregnancy/delivery complications Other common physical malformation or deformation among children can be linked to poor nutrition, poorly treated burns related to cooking on open fire, and unsuccessful surgical procedures (e.g., for spina bifida). The Nigerien government has long recognized the importance of addressing the needs of persons with disabilities. Since 1978, national policies have called for human rights and for the inclusion of children with disabilities into education. Schools for the blind and for the deaf were eventually established in the city of Niamey. A few small educational centers emerged to educate adults with disabilities. In 2005, policies were revised to push for inclusive education, integrating students with special needs and with physical disabilities into mainstream school. However, cultural myths, lack of infrastructure, and teachers not trained to work with children with disabilities, have been and continue to be barriers to the full inclusion of children with disabilities into the educational system. Vivi Vo, Morgan Kennedy, Amina Alio, PhD University of Rochester, Public Health Sciences OBJECTIVES The objectives of our project were: (1) to explore socio-cultural, healthcare and policy factors associated with physical disability in Niger; and (2) to understand models and processes of service coordination and advocacy for meeting the need of persons with disabilities. METHODS In June 2015, we spent 18 days in Niamey, Niger, where we conducted a review of documents on the situation of physical disability in the country, with a focus on services provided, and identification of local resources and efforts at addressing the needs of individuals living with a disability. In the field, we conducted key informant interviews and field observations among various local agencies working on development that is inclusive of children, youth and adults with disabilities. Education of Children with Disability • Of the 715,000 children with disabilities in Niger (estimate) school age children with disabilities, only 300 attended an educational institution in 2005, or 0.86%, compared with the 50% proportion of school children in the general population. • Between 2005 and 2010, a slow improvement was observed (Table 1), with an increase to 418 children with disability attending an educational institution, while in the general population, the rate of school enrollment improved from 50% to 67%. • Among the children attending these educational center, there exist disparities by: • Gender (36% are girls) • Geographic region (most institutions are concentrated in urban regions) • Disability type • Numerous challenges include: • Lack of trained teachers • Infrastructure not disability-friendly • Cultural beliefs and misconceptions about causes of disability • Although there are policies in place since 1978 (revised in 2005) that are calling for inclusive education, their implementation has been slow and inadequate. RESULTS EDUCATION of Children with Disabilities CONCLUSIONS There is an important network of international, local non-profit, and government organizations working together to address the needs of individuals with disabilities. Though this network map (Figure 1) is certainly not complete due to limited time and data, it indicates the existence of mutual shared resources and best practices, referrals and financial support. The cultural misconceptions and stigma associated with physical and intellectual disabilities continue to hinder enrollment and recruitment of persons with disabilities who are seen as incapable of providing to society and are expected to remain dependents of family members or resigned to a lifetime of begging on the streets. There is psychological trauma associated with society’s response to disability, such as isolation, or difficulty marrying, an especially important aspect of women’s lives in Niger. The challenges are similar across organizations and sectors. Lack of trained instructors to work with persons with disabilities Lack of culturally appropriate curricula for training the trainers Need for addressing the educational and health needs of those with intellectual challenges and deficiencies Need for the implementation of existing policies for improving acceptance and ensuring the rights to education and healthcare for persons with disabilities. The need to address cultural assumptions and misconceptions about disabilities in order to improve quality of life and respect for the human rights of persons with disabilities. Figure 1. Network map of organizations working together to address the needs of persons with disabilities in Niger. Table 1. Enrollment in school or other educational centers (2010) Type of Institution # of Institutions # of Educators # Girls Enrolled # of Boys Enrolled Total # of Students Schools for the visually impaired 6 11 22 34 56 Schools for the hearing impaired 16 25 101 188 289 Centers for the visually impaired 18 38 23 23 46 Schools for the intellectually challenged or deficient 0 0 0 0 0 Centers for the intellectually challenged or deficient 1 4 8 19 27 Total: 41 78 154 264 418 Local Approach to Addressing the Needs of Persons with Disabilities Supported by government policies, local non-profit and international non- governmental organizations have taken the lead to address the various needs of persons with disabilities in Niger. Though many NGOs are working in silos, there is an important network of organizations working together for persons with disabilities in Niger. We found that CBM-Niger was a key, backbone organization in this context. A Christian organizations based in Germany, originally Christian Blind Mission, it is now simply CBM as they have expanded to include all disabilities. Though they provide no direct services, they serve as a central source for connecting organizations, providing funding to local organizations, managing and evaluating development projects, and advocating for policy change. The Overseas Development Institute (ODI), based in the U.K., was another important organization supporting and linking local organizations and NGOs working with persons with disabilities. Their overall mission is to “inspire and inform policy and practice which lead to the reduction of poverty, the alleviation of suffering and the achievement of sustainable livelihoods in developing countries.” The primary sectors identified are: Health Education Livelihood Economic development Policy & human rights Although not always explicitly stated in their bylaws, cultural misconceptions and stigma were constantly at the forefront of their work, from recruitment, to treatment, rehabilitation, training and reintegration. Adult Education & Skill-Based Training Literacy: The education of adults with disabilities is focused on literacy, including braille for the visually impaired and Sign Language for the deaf. Vocational Training: To improve participation of persons with disability in development and to ensure economic independence, much efforts are directed towards teaching skills and trades. Skills taught include sewing, weaving, mechanical repairs (e.g., bicycle repair), agriculture/gardening, and commerce. Challenges: • Funding for establishing new and expanding current centers • Trained instructors (especially for Sign Language and Braille) • Trained instructors for the intellectually challenged or deficient • Cultural misconceptions and beliefs that impact recruitment of persons with disabilities Health and Rehabilitation • Health services provided to persons with disabilities include: • Rehabilitative services, including physical therapy and provision of wheelchairs • Surgical procedures: cataracts, club foot, burn-related disabilities, among others • Medical treatment for disabling conditions such as epilepsy • Challenges: • Lack of trained healthcare personnel • Cultural biases and misconceptions of healthcare personnel • Lack of funding and equipment • Cultural misconceptions of families of persons with disabilities “I would have loved to go to school. I was the eldest child at home. All my brothers and sisters went to school. But for me the way was just too tiresome, even though my father had had a wheelchair made for me. But neither the school nor my parents really focused on registering me” (Bicycle Mechanic above) CBM Report Students at school for children with impaired vision or blind. Vivi & Morgan with CURE program director and a child with recently corrected deformity resulting from poorly treated burn. Following cataract surgery Challenges children with disabilities face in school Beneficiary of support for agriculture & gardening for persons with disabilities. Young women with disabilities learning seamstress skills. For additional information, contact: Vivi Vo at: [email protected] or Dr. Amina Alio at: [email protected]
