A second chance for disabled children in Niger
Niamey, Niger, February 2009-When I first met her, fitted in her new dark-brown, custom-designed prosthesis, the 7 year-old Sharifa was trying very hard, between two iron bars, to learn to walk. Every step she was taking pushed her away the physical limits imposed by her disability.
“When my baby, my seventh, was first introduced to me, I felt like my flesh was melting down. I could expect everything, but not a newborn without legs” says Maimouna Adamou, her 30 years mother from the small village of Koy’ia, hundred kilometers east of Niamey. Recently she witnessed how her girl, Sharifa, hosted by the Hope House, a UNICEF-supported rehabilitation center for children with disabilities, lived a life-changing experience.
Sharifa is shy. Nevertheless, she was so determined, that in the beginning her willingness to walk quicker than her body allows, moved her to tears. The reason behind this, says her mother Maimouna, is “her eagerness to go to school next year and live an ordinary young girl’s life”.
Common sense solutions against prejudice
In the rehabilitation room of the Hope House, other children with different disabilities, including those suffering from polio aftermaths, are taking extremely seriously their therapy sessions under the watch of Jennifer Everhart, the manager of the rehabilitation facility, a former volunteer, fully dedicated to the difficult task of providing rehabilitation to the disabled children of Niger. The creation of the center was an initiative of PRAHN (Community Based Rehabilitation Project for the Blind and other People with Disabilities of Niger), which receives support from UNICEF to provide rehabilitation services to children with disabilities.
The work focuses on finding and applying practical solutions to prevent economic and social discrimination against persons with special needs, by helping them rehabilitate physically, providing them medical care and helping get involved in income generating activities.
Giving the prejudices against people with disabilities, communities tend to hide or underscore the physically or mentally needy persons, argues Ms. Everhart. We sensitize and train community members to better accept and take care of disabled persons.
The sessions include, among other issues, the training on nutrition, to prevent some forms of disability, giving that 36% of the children who received surgery in 2008 had bone deformities probably related to Rickets. It is suspected that these cases are because of nutritional deficiencies (Calcium and/or Vitamin D) and exacerbated by other poor health, hygiene and nutrition conditions.
In 2008, a total of 116 surgeries were performed, out of which 85 surgeries supported by UNICEF. 97 children received an orthopedic appliance.
A total of 433 children received regular physiotherapy in their communities by PRAHN fieldworkers, while 206 children were hosted and received physiotherapy at Hope House. In addition, physical rehabilitation specialists carry out consultations for people with disability, or at risk for disability, train mothers of children with Cerebral Palsy on the care of their children. The center provides support for training in a trade and financial assistance for school. Another form of support is small business loans for the groups of families of the children with disabilities, often mothers or grandmothers.
Families as active actors in the rehabilitation efforts
Nine field workers strive to screen children with disabilities, eligible to the rehabilitation program, in the villages of the Dosso and Tillabéri regions (west of the country). In 2008 more than 1000 children have been screened in these two regions. Children then receive care according to the provided recommendations, while families are helped to get involved in the rehabilitation efforts.
A first category includes children who need just rehabilitation. They are helped and their families receive counseling on how to better take care of them, to support them live an independent life an develop to their full potential.
The children who need surgery make another category. As a rule, their families cannot afford to pay for it. The surgery alone costs at the very least 500 US$, and this after a 25 per cent discount offered to the project by the National Hospital of Lamordé, in the country’s capital. If to consider the cost of the after-surgery care and of the bracing provided by Hope House, then it adds up to 1,000 US$. Regardless its level of poverty, the family should contribute up to 10 per cent of the total expenditure. It is a deliberate decision of the project managers, which aims at motivating families and giving them the opportunity to feel involved in providing for their children’s wellbeing, says Jennifer Everhart.
The third category consists of children who don’t need surgery, but intense physiotherapy and bracing. Sharifa belongs to this group. Had her family have to pay for the whole care, it would have cost some 800 US$ out of the family’s budget, which is a totally unrealistic scenario. Now, with UNICEF support, Sharifa’s parents paid 60 US$ only. This contribution seems small, with regard to the expensive and intensive care that was provided, but for this family and for all families supported by the Hope house, it means a huge sacrifice. “Without the help of our extended family, we could not have collected this amount. My husband, despite his deep love for Sharifa, is just a poor farmer making his best to feed us”, confesses Maimouna, Sharifa’s mother.
Hope House facility has 22 beds to host children and their family members. The space and the budget are in short supply, giving the big demand for care. Sharifa can consider herself lucky enough to have benefited from accommodation, medicines, functional physiotherapy, and prosthesis. However, her quest for a full life is just beginning. As she grows, she will need to regularly change her prosthesis, despite the financial limitation of her family.