The cost of disabling hearing impairment in South Africa - Smith, Magteld (University of the Free State, 2013)
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.

Afrikaans: Hierdie tesis ondersoek die koste van gehoorgestremdheid (GHG) in Suid-Afrika (SA). Die sewe artikels oorweeg elke dimensie van die lewe van persone met GHG. Die onderwerpe is die geskiedenis van dowe onderwys; sosio-ekonomiese faktore, wetgewing, koste van gebaretaal interpretasie, die koste van gehoorapparate; koste van kogleêre inplantings, en genetiese toetsing van aangebore gehoorverlies. Die tesis maak gebruik van 'n unieke raamwerk, wat die hele konteks van die dimensie oor gehoorgestremd in SA dek. Die onvermydelike gevolgtrekking is dat die lewe vir persone met GHG in SA 'n formidale uitdaging is. Dowe onderwys is onvoldoende, teenstrydig is in sy metodes met geen effektiewe navorsing oor die beste praktyke en swak uitkomste, veral ten opsigte van beroepe en standaard van lewensgehalte. Die studie van die sosio-ekonomiese faktore is hoofsaaklik deur middel van 'n opname met 3000 respondente. Onder sy bevindinge is die frekwensie van veelvuldige gestremdhede, lae inkomste, intellektuele gestremdhede, veral dié wat verband hou met emosionele nood, en seksuele mishandeling. Hierdie faktore dui daarop dat persone met GHG in SA verduur in sommige gevalle van die ergste vorms van maatskaplike en ekonomiese diskriminasie. Terwyl die Grondwet van Suid-Afrika een van die wêreld se mees progressiewe wetgewing is, insluitend die regte van persone met gestremdhede, is dit nog te lewer op sy beloftes. Terwyl daar wette soos dié met betrekking tot indiensneming en opvoeding wat van toepassing is op persone met gestremdhede, is daar min wetgewing op persone met GHG. In SA, omvattende wetgewing vir gestremdhede wat gebaseer is op die mediese-sosiale model soos gemanifesteer in die Wêreld Gesondheidsorganisasie se Internasionale Klassifikasie van Funksie, Gestremdheid en Gesondheid is nodig. Terwyl Suid-Afrikaanse Gebaretaal (SAGT) sentraal staan in die land se "Dowe kultuur," het dit nog nie bewys dat 'n effektiewe akkommodasie vir persone met GHG wat hul in staat stelom effektief te kommunikeer met die meerderheid gehoorde wêreld nie, wat noodsaaklik is vir die sukses in onderwys, indiensneming en die benutting van die dienste. Daar is probleme inherent in SAGT, die gebrek aan eenvormigheid en die voldoende woordeskat om te kommunikeer wat nodig is in komplekse pogings insluitende onderwys en indiensneming. Die koste van gebaretaal interpretasie dienste is buite die bereik van byna alle individue, besighede, en agentskappe. "Real-time captioning" dienste is die beste opsie vir doeltreffendheid, akkuraatheid, rekordhouding, en selfs nut buite die dowe gemeenskap as 'n element van Universiële Instruksionele Ontwerp. Gehoortoestelle (GT) word wyd gebruik deur persone met GHG. In SA, is hulle verkoop in 'n toenemend komplekse mark waar die pryse buitensporig hoog is vir die ekonomies minderbevoorregte en inligting oor die gehalte van die produkte en dienste is ver van deursigtigheid en soms selfs misleidend. 'n Onvoldoende aantal oudioloë, veral diegene wat in staat is om dienste te lewer in ander tale as Engels en Afrikaans, maak die toegang tot gehalte GT nog moeiliker. Die gebruik van kogleêre inplantings in SA bly beperk in hierdie stadium as gevolg van die onwilligheid van die mediese skemas en die gebrek van die regering se ondersteuning, ten spyte van die bewese voordele van hierdie tegnologie. Tans, die tegnologie is 'n realistiese opsie vir mense met hoër middelklas inkomste of hoër. Onlangse navorsing in genetiese toetsing aan die Universiteit van Iowa (VSA) het 66 gene geïdentifiseer wat oorsake is vir gehoorverlies. Dit is moontlik vir dokters wêreldwyd om toegang te verkry en hierdie tegnologie gebruik deur die stuur van monsters na Iowa, maar dit blyk dat dit minner bekend of algemeen onbekend is in Suid-Afrika. Daarbenewens is daar is 'n behoefte aan meer programme in mediese genetika en genetiese berading. Alhoewel hierdie studie tot die gevolgtrekking gekom het dat die situasie vir persone met GHG in SA uiters moeilik en uitdagend is, is dat een hoopvol faktor die teenwoordigheid van wêreldklas-universiteite oor beskik. Hierdie tesis bied 'n omvattende, landswye model vir verdere navorsing binne en buite SA wat aangewend kan word om die status van mense met GHG te verbeter.
Keywords: Disabling hearing impairment; South Africa; Hearing loss; Costs; Cochlear implants; Hearing aids; South African sign language; Disability legislation; Genetic testing for hearing impairment; International classification of functioning, disability and health; Hearing disorders; Hearing aids -- South Africa -- Costs; Medical economics -- South Africa; Cochlear implants -- Costs; Thesis (Ph.D. (Economics))--University of the Free State, 2013