The cost of disabling hearing impairment in South Africa

English: This thesis examines the costs of disabling hearing impairment (DHI) in South Africa (SA). Its seven papers consider every dimension of life of persons with DHI. Their subjects are deaf education; socioeconomic factors; legislation; cost of sign language interpretation, cost of hearing aids; cost of cochlear implants; and genetic testing of congenital hearing impairment. Utilizing a unique framework, the entire picture of deaf life for an entire nation is considered. The inevitable conclusion is that life for persons with DHI in SA is formidably challenging. Deaf education is insufficient, inconsistent in its methodologies with no effective research on best practices and poor outcomes, in particular regarding occupations and standard of living. The study of socioeconomic factors was conducted primarily by means of a survey with 3,000 respondents. Among its findings are the frequency of multiple disabilities, low income, mental disabilities, particularly those associated with emotional distress, and sexual abuse. These factors indicate that persons with DHI in SA suffer some of the worst forms of social and economic discrimination. While the Constitution of SA is among the world's most progressive, including the rights of persons with disabilities, it has yet to deliver on its promises. While there are laws such as those regarding employment and education that are applicable to persons with disabilities, there is little disability legislation per se. In SA, comprehensive disability legislation based on the medical-social model as manifested in the United Nations International Classification of Function (ICF) is needed. While South African Sign Language (SASL) is central to the country's "Deaf Culture," it has not proven itself an effective disability accommodation that enables persons with DHI to communicate effectively with the majority hearing world, as is essential for success in education, employment, and the utilisation of services. There are problems inherent in SASL itself, its lack of uniformity and sufficient vocabulary to communicate as needed in complex endeavors including education and employment. The cost of sign language interpretation services is beyond the reach of nearly all individuals, businesses, and agencies. Real-time captioning services are the best option for efficiency, accuracy, record keeping, and even utility beyond the deaf community as an element of Universal Instructional Design. Hearing aids (HA) are widely used by persons with DHI. In SA, they are sold in an increasingly complex market where prices are prohibitively high for the economically underprivileged and information regarding the quality of products and services is far from transparent and sometimes even deceptive. An insufficient number of audiologists, especially those able to provide services in languages other than English and Afrikaans, makes access to quality HA's even more difficult. The use of cochlear implants in SA remains limited at this time due to the reluctance of medical schemes and the lack of government support, despite the proven benefits of this technology. Currently, the technology is a realistic option only for people with upper middle class incomes or higher. Recent research in genetic testing at the University of Iowa (US) has identified 66 genes relevant to hearing impairment. It is possible for physicians worldwide to access and employ this technology by sending samples to Iowa, but it appears to remain little known or unknown in SA. In addition, there is a need for more programs in medical genetics and genetic counseling. Although this study concludes that the situation for persons with DHI in SA is extremely difficult, one hopeful factor is the presence of world-class universities. This thesis provides a comprehensive, nationwide model for further research within and beyond SA that can be utilized to improve the status of people with DHI.