Amidst its famed snow-capped peaks and valleys, Nepal has been battling with hearing impairment as a significant public health issue. Hearing loss, for example, affects over eight percent of adolescents, while otitis media effusion has been reported in 24.5 percent of school-age children in Nepal (Int J Pediatr Otorhinolaryngol. 2011;75:1589 http://bit.ly/2kzFpT4). At the forefront of this battle is the National Association of the Hard of Hearing and Deafened Nepal (SHRUTI), a non-profit organization created and managed by people with hearing disabilities to promote the welfare of the country's hard of hearing and deaf populations.
Since its founding in 2012, SHRUTI has been advocating for the rights of people with hearing disabilities in Nepal, from their inclusion in national health care policies to their protection against discrimination. It has built its strength through fruitful partnerships with the Asia-Pacific Federation of the Hard of Hearing and Deafened (APFHD) and the International Federation of the Hard of Hearing (IFHoH), among many others. Guided by a vision of an inclusive society, SHRUTI has carefully designed its goals and programs to foster not only the immediate care of those with hearing problems, but ultimately, the long-term empowerment and integaration of hearing-impaired people into society.
ACCESS TO HEARING HEALTH CARE
Despite the backdrop of poverty in Nepal, SHRUTI is dedicated to overcoming the barriers to hearing health care access, starting with early identification and treatment of children with hearing problems. One of SHRUTI's established programs is the free ear camp, in collaboration with local hospitals and schools, to provide various communities with hearing tests and treatment options. The free ear camps have opened doors for other intervention opportunities, such as counseling for teachers and families of children with hearing impairment, to orient them to the distinct needs of students with hearing disabilities, and encourage supportive and functional environments at home and in school. Part of SHRUTI's long-term goals is to bring in psychological treatment and rehabilitative services for people suffering from the emotional and mental impact of hearing loss.
A SUCCESS STORY
In 2014, SHRUTI organized an ear camp in two schools at the Kathmandu Valley, as well as an awareness program for teachers in 13 schools in the region. Called the “Early Intervention and Support for Hearing-Impaired Children in Nepal” project, the ear camp had a total of 478 primary school-level children who received ear examinations and hearing assessments. Of these children, 4.38 percent were found to have hearing loss. Most of the children were given medical interventions, but some had hearing conditions that required the use of hearing aids.
One of the children assessed in the ear camp was a deaf-blind (low-vision) female student, Swastika, who was diagnosed with profound hearing loss. Her teachers shared that they've been having difficulties in trying to make her understand the lessons in class. She was 12 years old but was still in the first grade. She already had hearing aids, but those were an old model and not powerful enough to meet her needs. She was noticeably isolated from her peers, and exhibited psychosocial problems as well. Since the teachers were not successful in communicating with her, the school administration had planned to transfer her to a special education institution.
After examining Swastika's hearing assessment results and her teachers’ input, SHRUTI made a careful observation: Swastika's main concern was her hearing loss. The group counseled Swastika's teachers and parents on the appropriate interventions, and provided her with new hearing aids. She also started getting speech therapy. It was not long before she began to show positive signs of adjustments in the classroom—she even began singing and seemed happier than ever!
In 2016, SHRUTI had a follow-up meeting with Swastika's parents who noted her progress; she has been significantly more interactive. Her mother shared that Swastika has gained a lot of confidence, shows serious dedication to her studies, and even plans on pursuing a career in radio broadcasting. Before SHRUTI's intervention, Swastika rarely interacted with her brother, but their relationship has greatly improved in recent years. Unfortunately, her brother has been exhibiting signs of similar hearing problems, but Swastika has been showing great interest in her brother's treatment.
This case shows the importance of early intervention and collaboration between hearing professionals, educators, and parents. While hearing tests are vital to identifying possible hearing problems in children, it is equally important to keep teachers and parents informed about hearing health care and intervention strategies for children with hearing disabilities.
AWARENESS AGAINST DISCRIMINATION
Promoting public awareness about hearing disabilities is one of SHRUTI's main goals. From art exhibits to local radio shows, SHRUTI has shared valuable information about the numerous challenges that hearing-impaired people face, including discrimination in the workplace. The organization maintains an active role in fostering inclusive education, and equal social and economic opportunities for hard of hearing and deaf people. In 2015, SHRUTI collaborated with U.K.-based Disability Development Partner (DDP) in a hearing disability awareness program for teachers in Kathmandu. At present, SHRUTI and DDP are working on a demonstration model for the inclusion of students with hearing disabilities in the district of Dhading in central Nepal.
Self-efficacy is at the heart of SHRUTI's mission to help hearing-impaired and deaf people find suitable employment. Recognizing the importance of developing the physical, intellectual, and cultural capacities of this disabled population, SHRUTI organized the workshop, “Economic Empowerment of Persons with Disabilities and Post-Disaster in Nepal,” in June 2016. This community-based skills development training was supported by the local government and several international partners. While issues such as discrimination are not solved overnight, SHRUTI's job placement program, launched in 2014, has notably paved the way for engaging employers and local business owners to accommodate employees with hearing disabilities.
To ensure the long-term impact of its health care and awareness campaigns, SHRUTI aims to ultimately integrate these in larger nation-building projects in Nepal. In an effort to bridge the policy gaps in hearing health care, SHRUTI was able to attain a seat in the National Federation of the Disabled Nepal to represent the hard of hearing population. The group was also involved in relief efforts following the devastating earthquake in April 2015, and distributed hearing aid batteries and relief goods to affected communities in Nuwakot, Sindhupalchowk, Dhading, Kathmandu, and Lalitpur. Today, SHRUTI continues to push for better access to support services such as captioning and other assistive devices. There's still much to do to achieve its goals at the national level, but inspired by success stories, such that of Swastika, SHRUTI is determined to make Nepal a better place for the hearing impaired.