EARLY HEARING DETECTION AND INTERVENTION VIRTUAL CONFERENCE
MARCH 2-5, 2021
(Virtually the same conference, without elevators, airplane tickets, or hotel room keys)
2/28/2017 | 11:00 AM - 11:30 AM | Supporting the Frontline Responders: Ensuring Family Support Organizations Have Accurate, Useful Information | Hanover E
Supporting the Frontline Responders: Ensuring Family Support Organizations Have Accurate, Useful Information
A recent NCHAM study – Early Intervention Systematic Nationwide Analysis of Programs’ Strengths, Hurdles, Opportunities, and Trends (EI SNAPSHOT) funded by the Maternal and Child Health Bureau investigated the types and quality of information provided to families of children who are D/HH by family support networks including state Parent Training and Information centers (PTIs) and Family to Family Health Information Centers (F2FHICs).
NCHAM recruited and trained parents of children who are D/HH to make phone calls to family support centers to ask for information related to hearing loss and obtaining appropriate early intervention services and other supports for children who are D/HH. Parent contractors called the PTI and F2FHIC for each state in the United States and used a script to ask questions including:
• My baby failed his newborn hearing screening and is now two months old, but my pediatrician said not to worry about it. What would you recommend I do? Can I really wait until he’s one to do something?
• My son is two years old I am hearing a lot about sign language vs Listening and Spoken Language and people are very passionate about both. Can you explain a bit about the different options and tell me more about potential benefits and disadvantages of each?
Initial findings include that very few parents of children who are D/HH call family support systems and are not well-connected to EHDI programs. Personnel at centers made referrals to appropriate agencies and provided useful general parent support and early intervention information but many did not provide specific information related to hearing loss including information that is widely available through EHDI and other state programs.
This presentation we will provide an analysis of data obtained through this activity and explore ideas for better collaboration between EHDI programs and family support organizations such as PTIs and F2FHICs.
- Describe the role of state parent training information centers (PTIs) and family to family health information centers (F2FHICs).
- Examine mechanisms for providing vital information to families of children who are D/HH through existing family support networks.
- Facilitate conversations about more effective collaboration between EHDI programs and various family support networks.
Presentation:
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Presenters/Authors
Diane Behl
(), NCHAM, diane.behl@usu.edu;
Diane Behl is a Senior Faculty member at the National Center for Hearing Assessment and Management. She facilitates telehealth learning communities and is a co-investigator for cost-effectiveness studies. She has expertise in evaluating the effectiveness of service coordination provided via Part C Early Intervention and Maternal and Child Health programs. Diane was a primary researcher on the EI SNAPSHOT study.
ASHA DISCLOSURE:
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Sara Doutre
(), National CMV Foundation, saradoutre@gmail.com;
Sara Doutre is a PHD student studying sociobehavioral epidemiology at Utah State University. She has an MA in education policy studies and a BS in elementary and special education. A former special education teacher, she currently consults with state departments of education and health on special education policy. Her six-year-old daughter is deaf due to congenital cytomegalovirus.
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Heather Mariger
(), Utah State University, heather.mariger@usu.edu;
Heather Mariger is a research scientist with the NCHAM at Utah State University where she is currently working on the Early Intervention Systemic Nationwide Analysis of Programs’ Strengths, Hurdles, Opportunities, and Trends (EI SNAPSHOT) project.
Heather comes to NCHAM through an unusual route. Classically trained in Culinary Arts and Hospitality she has worked and studied across both the US and Europe. While working on her Masters Degree at Kansas State University, she became intrigued by the possibilities that the Internet promised for higher education. These interests led her to Utah State where, while working on her Doctorate in Instructional Technology, she became involved in disability research – and has never looked back. She has worked across a wide variety of assignments including projects to: create videos, websites and a curriculum to teach parents and paraprofessionals about the use of naturalistic interventions in teaching young children; develop a set of indicators and resources to promote web accessibility in higher education; and design training and protocols for a large-scale intervention/control study on the effect of an additional school 25 days on children in K-3rd grade. She is currently working on a study to help understand the state of early intervention services for children who are D/HH and their parents across the US.
Her interests include Usability, Accessibility, the use of internet and mobile technologies to promote parent services and support, and Inclusive Tourism/Hospitality.
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