What to tell a child about Usher syndrome and when to tell them is one of the most difficult questions to answer for both families and for professionals.  Ilene thinks this group could help.  If we can reach some consensus, perhaps a position paper could be created that could be distributed to doctors and families to help guide them in answering these questions.  We’ll try to reach some consensus on the subject and, if so, discuss how best to proceed toward creating that position paper.
 
Ilene Miner, LCSW is a licensed clinical social worker in New York and California who has been working with deaf, hard of hearing, and deafblind people for 30 years. She developed a medical program for deaf and deafblind people at Bellevue Hospital in Manhattan (1980-1998), worked as the mental health consultant to the Helen Keller National Center in New York (1992-1999), and was director of a licensed mental health center for deaf, hard of hearing and deafblind people in New York (1999-2008). She has spoken widely in the US and in Europe on psychosocial aspects of Usher Syndrome, developed the framework for a mentor program for young people with Usher in London, England, and did a comparison of self identity issues of  people with Usher in Copenhagen and the US. She has published several articles on psychosocial aspects of Usher and a book chapter on psychotherapy with people with Usher Syndrome.

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