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Abstract

This article reports findings from a national needs assessment to ascertain the needs of families of young children who are deaf or hard of hearing (DHH), and what supports, resources and opportunities Early Hearing Detection and Intervention (EHDI) programs and EHDI-contracted Family-based Organizations (FBOs) were providing to families. Results were intended to guide the activities of a federally funded technical assistance center charged with promoting Family Leadership in Language & Learning for families of children who are DHH. There were 458 completed surveys by parents of children who were DHH between the ages of 0-6. Surveys were completed by 56 of the 59 EHDI Coordinators and by FBO staff representing 40 of the 59 EHDI Programs. Focus groups were conducted with parents, EHDI Coordinators, and FBO staff members. This article focuses on answering the question,What types of support did families receive or wish they had received when their child was diagnosed as DHH?Key findings were that: 1) families should be offered comprehensive information at different points in their child’s life; 2) families need coordinated, trusted support and resources; 3) families need support from other parents who share their lived experience; and 4) underserved families need additional support.

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