The cost of disabling hearing impairment in South Africa

[摘要] 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 subjectsare deaf education; socioeconomic factors; legislation; cost of sign language interpretation,cost of hearing aids; cost of cochlear implants; and genetic testing of congenital hearingimpairment.Utilizing a unique framework, the entire picture of deaf life for an entire nation isconsidered. The inevitable conclusion is that life for persons with DHI in SA is formidablychallenging. Deaf education is insufficient, inconsistent in its methodologies with noeffective research on best practices and poor outcomes, in particular regarding occupationsand standard of living.The study of socioeconomic factors was conducted primarily by means of a surveywith 3,000 respondents. Among its findings are the frequency of multiple disabilities, lowincome, mental disabilities, particularly those associated with emotional distress, and sexualabuse. These factors indicate that persons with DHI in SA suffer some of the worst forms ofsocial and economic discrimination.While the Constitution of SA is among the world's most progressive, including therights of persons with disabilities, it has yet to deliver on its promises. While there are lawssuch as those regarding employment and education that are applicable to persons withdisabilities, there is little disability legislation per se. In SA, comprehensive disabilitylegislation based on the medical-social model as manifested in the United NationsInternational Classification of Function (ICF) is needed.While South African Sign Language (SASL) is central to the country's DeafCulture, it has not proven itself an effective disability accommodation that enables personswith DHI to communicate effectively with the majority hearing world, as is essential forsuccess in education, employment, and the utilisation of services. There are problemsinherent in SASL itself, its lack of uniformity and sufficient vocabulary to communicate asneeded in complex endeavors including education and employment. The cost of signlanguage interpretation services is beyond the reach of nearly all individuals, businesses, andagencies. Real-time captioning services are the best option for efficiency, accuracy, recordkeeping, and even utility beyond the deaf community as an element of Universal InstructionalDesign.Hearing aids (HA) are widely used by persons with DHI. In SA, they are sold in anincreasingly complex market where prices are prohibitively high for the economicallyunderprivileged and information regarding the quality of products and services is far fromtransparent 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 reluctanceof medical schemes and the lack of government support, despite the proven benefits of thistechnology. Currently, the technology is a realistic option only for people with upper middleclass incomes or higher.Recent research in genetic testing at the University of Iowa (US) has identified 66genes relevant to hearing impairment. It is possible for physicians worldwide to access andemploy this technology by sending samples to Iowa, but it appears to remain little known orunknown in SA. In addition, there is a need for more programs in medical genetics andgenetic counseling.Although this study concludes that the situation for persons with DHI in SA isextremely difficult, one hopeful factor is the presence of world-class universities. This thesisprovides a comprehensive, nationwide model for further research within and beyond SA thatcan be utilized to improve the status of people with DHI.

[发布机构] University of the Free State