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Overview of Deaf-Blind people in Louisiana |
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Overview of Deaf-Blind people in Louisiana Usher Syndrome first appeared around the mid-18th century originated possibly in Nova Scotia and French Canada along with possible earlier genetic European roots and propagated in Attakapas District (present day St. Martinville) with families moving and spreading out to multiple parish Acadiana region in Southwest Louisiana, with Vermilionville (present day Lafayette) as the hub. The people of this area lived an insular life and as a result, the current Acadian population of approximately 500,000 is experiencing a higher incidence of Usher Syndrome. To this day, Louisiana has one of the largest populations per capita of either Usher Syndrome or Deaf-Blind people in the nation. A grant was given to do a census to count the number of Deaf-Blind people in Louisiana. The current count is at approximately 400 individuals with Usher Syndrome and Deaf-Blindness. However, data is still being collected in disparate settings and Deaf-Blind community members anticipate a significantly higher total number as Acadian families continue to marry and produce more offspring. As an autonomic recessive gene, Usher Syndrome is known to produce carriers and often skip a few generations before producing more affected offspring. Many individuals lead lives of isolation after losing much of their central vision due to degenerative gene of Usher Syndrome and inherent trait of Retinitis Pimentos. Much of Louisiana is rural, and many people who eventually become Deaf-Blind are scattered throughout, settling on land inherited from their forbearers. Hence this multi-parishes region is unable to provide the services and care these people need because of the spread-out effect. Therefore a centralized center is needed to provide a comprehensive training, education, services and care for Southwestern Louisiana and the state. Many barriers work to perpetuate a life of isolation. Some of these barriers include minimal access to qualified interpreting services; too few support service providers to assist them in leading independent lives; and inadequate accessible transportation. Independent living skills training such as Braille reading, cooking and being mobile as a blinded Deaf person has been available on a limited basis. Another barrier has been and continues to be insufficient access to technology and training. Learning to use with adaptations, technology available to the general public, e-mail for instance, would increase self-sufficiency. However, when these skills are not learned it creates an unfortunate dependence on family, friends or limited skilled professionals who can use the American Sign Language. While there is a growing understanding of Usher Syndrome and some barriers are being reduced, much more work is needed to create a community of more independent, satisfied people with either Usher Syndrome or affected families. -- Dan Arabie
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