Title: 'Parent experiences with the infant hearing testing process'
Track: 8-Program Evaluation and Quality Assurance
Audience: Primary Audience: State Health Department
Secondary Audience: Family of a child with hearing loss
Tertiary Audeince: Hospital/Birthing Center<
Keyword(s): ABR, Sedation, Natural Sleep, Operating Room
Learning Objectives: 1. Describe how parents get connected to an audiologist for hearing testing 2. Describe the average age hearing testing is completed 3. Describe how the ABR test is typically done (natural sleep, under sedation, in the operating room) 4. Describe challenges parents experience in getting the hearing test completed 5. Describe the information parents typically receive at the time of diagnosis


When a baby fails the newborn hearing screening, parents are told that a diagnostic hearing test is needed to determine if a hearing loss is present. If a hearing loss is present, this evaluation provides the necessary details to move forward with the intervention process. Crucial steps, such as hearing aid fitting and early intervention decisions are made using the results from the diagnostic evaluation. Further progress in the EHDI process is reliant on the hearing test and the earlier the testing is done the earlier intervention can begin. In fact, the Joint Committee on Infant Hearing (2007) guidelines recommend that this testing be completed no later than 3 months of age. Unfortunately, many babies are not receiving testing in a timely manner. In order to better understand the challenges parents face related to the diagnostic process, a survey was developed and distributed to parents that are members of parent support organizations. The results of this survey will be presented, and the audience will be invited to share their thoughts and suggestions related to timely diagnostic testing.
Presentation(s): Not Available
Handouts: Not Available
Lauri Nelson - Utah State University
     Credentials: PhD
      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.
Sara Kennedy - Colorado Hands & Voices
     Credentials: Director
     Other Affiliations: OT
      Sara is a mom of four children, including a daughter who was born at home and later identified with a profound hearing loss. An occupational therapist by training, Sara has worked for Hands & Voices since 2000, currently serving as the Colorado chapter director and the editor for the quarterly newspaper, the Communicator, at the Headquarters level. Sara has a special interest in advocating for hearing screening in the homebirth community. She was a coauthor for the handbook Bridge to Preschool: Navigating a Successful Transition as well as articles and presentations on teaching our deaf/hh children about sex, promoting self advocacy, progressive hearing loss, and the decision process regarding cochlear implants. She finds parenting teenagers to be an even bigger challenge.
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.
Irene Forsman - MCHB
     Credentials: Ms, RN
      Irene Forsman has been in the Maternal and Child Health Bureau for more than 2 decades in a number of positions focusing on children with special health needs and their families. She has been responsible for HRSA/MCHB’s universal newborn hearing screening and intervention program since passage of the legislation. Critical components of the program are screening of newborn infants for hearing loss prior to hospital discharge, audiologic diagnosis before three months of age, linkage to a medical home, enrollment in a program of early intervention before 6 months of age and linkage to a family to family support system. That program is now operational through out the United States, Puerto Rico and two Pacific Rim Territories.