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ABSTRACT INFORMATION
Title: 'Challenges In Obtaining An Infant Diagnostic Hearing Evaluation: The parent perspective' Track: 8-Program Evaluation and Quality Assurance Audience: Primary Audience: Secondary Audience: Tertiary Audeince: Keyword(s): newborn hearing screening, diagnostic evaluation, parent challenges Learning Objectives: Identify and discuss challenges parents face through the diagnostic process Discuss the role of professionals in guiding families through the process Identify information resources for parents and professionals Abstract: Hospital-based newborn hearing screening (NHS) has become standard practice in the United States over a relatively short period of time. Currently there are 43 states and territories that mandate NHS. While NHS has been implemented effectively, achieving diagnostic evaluation by 3 months of age and enrollment in early intervention by 6 months of age still presents a challenge. According to the Center for Disease Control 2007 statistics, approximately 95% of newborns were screened, but only 55% of those newborns who failed the screen received a diagnostic evaluation. In order to address this issue, a parent survey was designed, by a team of researchers, professionals and parents, to identify the challenges parents face in obtaining a diagnostic evaluation. The surveys were distributed to parent members of two national parent support organizations, Hands and Voices and the American Society of Deaf Children. The results, from a total of 413 surveys representing 43 states, provide a glimpse of how the identification process has changed over a thirty-year period. The insight provided by these parents addressed three early phases of the EHDI process: (1) referral from a failed NHS to a diagnostic evaluation; (2) aspects of the diagnostic evaluation; and (3) information provided to parents when hearing loss was confirmed and their level of comfort knowing what to do next. In addition to presenting the results of the study, the presentation will include an interactive discussion on the role of professionals in the field to ensure families get connected with the appropriate resources. Handouts: Handout is not Available
SPEAKER INFORMATION
PRESENTER(S): Rebecca Larsen - Utah State University      Credentials: B.S. in Speech and Hearing Science Arizona State University Graduate Student in Audiology at Utah State University      Other Affiliations: Utah State University       Becky Larsen is a doctoral student in the Audiology/Auditory Learning and Spoken Language program at Utah State University. She has an extensive background in working with the Deaf and Hard of Hearing, both in her personal life as a child of Deaf parents and as a professional Interpreter. She completed a Bachelor of Science degree in Speech and Hearing Science at Arizona State University in 2007, and began her studies at Utah State University in the Fall of 2009. After an inspiring experience at the Investing in Family Support Conference, she decided to focus her work with children and their families. She looks forward to working in a multidisciplinary practice that provides comprehensive diagnostic services for children with hearing loss and their families. Janet DesGeorges - Hands & Voices      Credentials: n/a       Janet DesGeorges lives in Boulder, Colorado with her husband Joe and is mom to three daughters, including Sara, who is hard of hearing. She is the Executive Director of Colorado Families for Hands & Voices, and is a co-founder and part of the national staff at Hands & Voices, Inc. as the Outreach Director. Janet has presented to groups nationwide and internationally about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges is the co-author of a chapter on Educational Law for Deaf/hh students, a contributing author to the NCHAM e-book, and many other publications. She currently serves on the national faculty for the NICHQ EHDI Learning Collaborative, as well as the Marion Downs Center Advisory, and co-chairs the CDC Parent-to-Parent Committee.   AUTHOR(S): Rebecca Larsen - Utah State University      Credentials: B.S. in Speech and Hearing Science Arizona State University Graduate Student in Audiology at Utah State University      Other Affiliations: Utah State University       BIO: Becky Larsen is a doctoral student in the Audiology/Auditory Learning and Spoken Language program at Utah State University. She has an extensive background in working with the Deaf and Hard of Hearing, both in her personal life as a child of Deaf parents and as a professional Interpreter. She completed a Bachelor of Science degree in Speech and Hearing Science at Arizona State University in 2007, and began her studies at Utah State University in the Fall of 2009. After an inspiring experience at the Investing in Family Support Conference, she decided to focus her work with children and their families. She looks forward to working in a multidisciplinary practice that provides comprehensive diagnostic services for children with hearing loss and their families. Karen Munoz - Utah State University      Credentials: Associate Professor      Other Affiliations: NCHAM       BIO: Karen Muñoz is an associate professor of audiology at Utah State University in the Department of Communicative Disorders and associate director of the National Center for Hearing Assessment and Management. Her research focus is in the area of childhood hearing loss. Janet DesGeorges - Hands & Voices      Credentials: n/a       BIO: Janet DesGeorges lives in Boulder, Colorado with her husband Joe and is mom to three daughters, including Sara, who is hard of hearing. She is the Executive Director of Colorado Families for Hands & Voices, and is a co-founder and part of the national staff at Hands & Voices, Inc. as the Outreach Director. Janet has presented to groups nationwide and internationally about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges is the co-author of a chapter on Educational Law for Deaf/hh students, a contributing author to the NCHAM e-book, and many other publications. She currently serves on the national faculty for the NICHQ EHDI Learning Collaborative, as well as the Marion Downs Center Advisory, and co-chairs the CDC Parent-to-Parent Committee. Lauri Nelson - Utah State University      Credentials: PhD       BIO: Lauri Nelson is an Associate Professor in the Department of Communicative Disorders and Deaf Education in the Listening and Spoken Language Deaf Education program at Utah State University. She has a dual background in both clinical audiology and LSL deaf education and currently directs the LSL deaf education graduate training program at Utah State University.