One of the most important therapeutic tools for helping children with Usher Syndrome – the leading cause of deaf-blindness in Israel – may be role models who have the same condition.
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A unique program initiated, developed and run by the Center for Deaf-Blind Persons in Tel Aviv, pairs children who have Usher Syndrome with mentors in their twenties who have the same syndrome, which involves congenital hearing loss and a progressive, degenerative eye disease. By setting a positive example, the mentors help tens of children each year – both Jews and Arabs – build self-confidence and learn to cope with the obstacles of their situation.
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Program coordinator Yael HaLevi, who has Usher Syndrome herself, explains that for most of the children, the relationship with a mentor represents their first contact with a successful role model. From her experience, as well as professional literature (Miner & Cioffi, 1996), it is clear that early and appropriate mentoring offers action and the hope of success as opposed to passivity and a feeling of impending failure. As she put it: “It fosters their self-assurance and allows them to develop into confident and independent adults. This in turn benefits not only the deaf-blind community, but also Israeli society, which - instead of needing to support these children when they become adults - gains contributing members of society.”
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David, 18, a recent high-school graduate, was unemployed and so depressed about his Usher Syndrome that he began to use drugs. Although he refused at first to have anything to do with the Center for Deaf-Blind Persons, his mentor persisted and built a relationship with him. David’s depression improved and he stopped his drug use. Eventually, the young man asked to become a mentor himself. Today, his personal experience has become a powerful basis for his mentoring others.
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The past few months have seen heightened interest in the program, sparked in part by an article in the professional journal “Deaf-Blind Perspectives.” Since its publication, Elias Kabakov, Professional Director of the Center for Deaf-Blind Persons, has responded to inquiries about the program from professionals and families in different states in the US, England and Jordan.
Those with the dual disability of deaf-blindness cannot always benefit from services only for the deaf or for blind, and require services and programs specifically designed to meet their needs. The Center for Deaf-Blind Persons develops and provides comprehensive educational, rehabilitation and social services for this population and enables them to live full and independent lives.
Based on an article by Debbie Toubi