Guides to Help Parents of Infants with Hearing Loss

Armen Hareyan's picture
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Imagine your joy the day your baby is born. Now imagine the fear and uncertainty you'd experience if you learned that your baby cannot hear. Where would you turn for help? Who could give you the information you need? What options would you have?

Beginning this month, parents in Virginia will have access to a family guide--a parent who has a child who is deaf or hard of hearing, one who can answer questions and guide them through this difficult period. Family guides are at the heart of the Virginia Department of Health's (VDH) Guide by Your Side Program. The family guides provide emotional support, information on options and resources and timely referral to early intervention services to families of children who have been recently diagnosed as deaf or hard of hearing.

"We believe that families can make the best choices for their children when they have good information and support," said State Health Commissioner Robert B. Stroube, M.D., M.P.H.

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As many as 300 children are born each year in Virginia with hearing loss. "The good news is that 99 percent of infants born in Virginia are screened for hearing loss before they leave the hospital," said Pat Dewey, manager of VDH's Early Hearing Detection and Intervention Program. "Because of this and follow up tests with audiologists, we detect hearing loss in most children within three or four months after birth."

The Guide by Your Side Program is designed to meet the needs of parents, many of whom report that soon after they received the diagnosis of their child's hearing loss they wanted to talk with another parent who had been through the same experience, get more information about their options and learn about agencies and resources that could help. A workgroup organized by VDH met over the course of a year and considered several model programs before deciding on Guide by Your Side from Hands & Voices, a non-profit, parent-driven national organization dedicated to supporting families of children who are deaf or hard of hearing. The Guide by Your Side model was selected because of its strong parent focus and the availability of training and technical assistance.

The program's first 15 family guides were trained in a two-day skill building session in October 2006. Each guide must be the parent of a child who has hearing loss and each must be willing to provide information on every form of hearing assistance, especially communication options available to children who are deaf or hard of hearing without bias or preference toward any method. The guides went through an extensive interview process and criminal background check.

Guides will be available to families in the areas around Alexandria, Centreville, Charlottesville, Dale City, Hampton, Radford, Richmond, Roanoke, Staunton, Virginia Beach and Williamsburg. Dewey hopes to increase the number of guides in the coming year.

Staff in VDH's Early Hearing Detection and Intervention Program will offer the services of a family guide to parents of children who are identified with hearing loss. Families may also call the program toll free at (866) 493-1090. Or families may contact the Partnership for People with Disabilities at Virginia Commonwealth University at (804) 828-1365. The Partnership coordinates the program for VDH.

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