Professionals worldwide are interested in the unique approach to helping those with Usher Syndrome.
By DEBORAH TOUBIrole model 88 224(photo credit: )
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.
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 dozens of children each year - both Jews and Arabs - build self-confidence and learn to cope with the obstacles of their situation.
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, it's 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."
The past few months have seen heightened interest in the program, sparked in part by a highly positive 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. A dialogue with the Holy Land Institute for the Deaf in Salt, Jordan, is of particular interest in terms of potential for cooperation between Arab and Jewish countries in the Middle East.
This year the goal is to have 20 children participate in the mentor program. They are among an estimated 1,000 Israelis who are affected by Usher Syndrome, which is the leading cause of deaf-blindness in Israel.
Chaim Fuchs, Executive Director of the Beth David Institute, which established and runs the Center for Deaf-Blind Persons, notes that there is a pressing need to expand the mentor program. "There is currently a waiting list of at least 30 children who could benefit greatly from participation in the program," he says. "Only a lack of funding stands in our way of accepting them and giving them the opportunity to grow through a relationship with a mentor."
(Reprinted by permission of Israel21c-Deaf-Blind Perspectives)
