A survey was conducted with state level chapters from Family Voices, Parent Training and Information Centers, and Parent–to-Parent USA to understand their current activities support families of children with hearing-related concerns and to identify gaps in their ability to support families of children who are D/HH. these organizations reported that they are contacted with parent requests for information in regard to family support opportunities, early intervention, referral sources pertaining to hearing concerns, financial help, and providing information about legal rights. Results showed that the greatest challenges for these organizations were related to needing to connect families to financial resources pertaining to hearing-related needs, engaging families of children who are deaf/hard of hearing in their organization's activities, having resources available in other languages, and 4) identifying pediatric providers that serve D/HH children. Potential ways to strengthen the capacity of these organizations to meet the needs of families with hearing-related concerns as well as increasing their awareness of partnerships with the EHDI system are discussed.
Behl, D. D. DesGeorges, J. & White, K. R. (2016). The Role of Family-led Disability Organizations in Supporting Families with Hearing-Related Concerns. Journal of Early Hearing Detection and Intervention, 1(1), 13-20. DOI: 10.15142/T3QC79
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