2023 Early Hearing Detection & Intervention Conference

March 5-7, 2023 • Cincinnati, OH

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3/07/2023  |   1:45 PM - 2:15 PM   |  U.S. National Survey of Parent-to-Parent Networks   |  DECC 232

U.S. National Survey of Parent-to-Parent Networks

Parent-to-Parent (PTP) networks provide vital support to parents of children who are Deaf or hard of hearing (D/HH). A conceptual framework of PTP support for parents of DHH children has been defined. The aim of this project is to understand the breadth depth of PTP networks across the U.S., how they align with the PTP conceptual framework, and integration within EHDI programs. A national survey was developed in collaboration with the Family Leadership in Language and Learning (FL3) Center and stakeholder input from parent leaders, audiologists, and EHDI experts. The survey was sent to PTP organizations in U.S. states and territories in March through June 2022. A structured internet search was simultaneously carried out in March 2022 to investigate the availability, accessibility, breadth of programs provided, and diversity for PTP organizations and EHDI websites in all U.S. states and territories. Completed surveys were received from 35 states and territories from 43 PTP organizations. Website searches were completed for all 50 states and territories. The surveys provided information on the breadth and depth of PTP mentoring networks, congruity with the accepted structural PTP framework, availability and diversity of supporting parents and the learning parents served, funding support, training for the supporting parents, measured outcomes, program visibility, diversity, and integration with EHDI programs. Findings showed a need for greater diversity of supporting parents and within PTP websites, and more stable funding sources. PTP organizations did not often appear in top search results, were not included in most EHDI websites, and displayed little diversity in race, ethnicity and language. Greater visibility and diversity are needed to optimally serve all parents in need of PTP support. Findings will be shared that describe a best practice model of PTP delivery for optimal support for families with young children who are Deaf or Hard of Hearing.

  • Participants will be able to define 3 optimal characteristics of supporting parents in PTP organizations.
  • Participants will be able to describe the availability of parent-led PTP organizations across the US.
  • Participants will be able to list factors that enable PTP organizations to optimally support parents of D/HH children.

Presentation:
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Transcripts:
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Presenters/Authors

Lisa Hunter (), Cincinnati Children's Hospital, lisa.hunter@cchmc.org;
Lisa Hunter is Scientific Director of Audiology and Professor at Cincinnati Children's Hospital Medical Center and the University of Cincinnati. She collaborates on a number of funded studies including evaluating physiologic factors associated with risks for hearing loss and understanding mechanisms for improved follow-up with newborn hearing screening in high risk famlies. She is a faculty with the Leadership Education in Neurodevelopmental and related Disabilities at Cincinnati Children's Hospital Medical Center.


ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Lisa Kovacs (), Hands & Voices , lisakovacs@handsandvoices.org ;
Lisa Kovacs is the Director of Programs for Hands & Voices Headquarters and the Director of the Family Leadership in Language and Learning (FL3) Center. She and her husband Brian have four young adult children including her son who is hard of hearing/deaf. Lisa was the 2019 Antonio Brancia Maxon Award for EHDI Excellence recipient. Her professional interest include; Parent Advocacy; Implementation of parent participation and engagement in systems building; Parent to Parent support; Deaf Education Reform; IDEA, ESSA, Part C and Part B Training to Parents, and Parent Leadership Training and Development.


ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Janet DesGeorges (), Hands & Voices, janet@handsandvoices.org;
Janet DesGeorges lives in Boulder, Colorado and is Executive Director of Hands & Voices Headquarters. Janet has presented to groups worldwide about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges received a program certificate from the MCH Public Health Leadership Institute in 2011 at the University of North Carolina – Chapel Hill. As an EHDI Systems advocate, Janet believes in the principles and guiding philosophies of Hands & Voices towards a parent-driven, professionally-collaborative approach when supporting families in the early years. Her areas of interest include Leadership Development for parents who participate in systemic improvement; Deaf Education Reform and Improvement; Children’s Safety and Success(preventing child abuse and neglect); Early Hearing Detection and Intervention Systems; and Parent/Professional partnerships in Quality Improvement processes.


ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Sheila Moodie (), Western University, Faculty of Health Sciences, sheila@nca.uwo.ca ;
Sheila Moodie is an Associate Professor in the Faculty of Health Sciences, School of Communication Sciences & Disorders and The National Centre for Audiology at Western University, London, ON, Canada. Recently her work has focused on understanding the meaning of parent-to-parent support and family-centred early intervention. She has interest in using integrated knowledge translation and implementation science to improve practice and in the development of effective listening skills for clinicians.


ASHA DISCLOSURE:

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Nonfinancial -

Samantha Redmond (), St. Louis Children’s Hosptial, Samantha.redmond@bjc.org;
Samantha Redmond is a Pediatric Audiologist at St. Louis Children's Hospital. She was a LEND fellow when working on this project at Cincinnati Children's Hospital.


ASHA DISCLOSURE:

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Nonfinancial -

Kate Wargel-Fisk (), Miami University of Ohio, wargelke@miamioh.edu;
Kate Wargel-Fisk is a doctoral student in Psychology at Miami University, Oxford, Ohio. She was a LEND fellow at Cincinnati Children's Hospital when working on this project.


ASHA DISCLOSURE:

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Nonfinancial -