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Engaging Parents in System Design to Reduce Loss to Follow-up

In Virginia, 96.3% of all infants born in hospitals in 2014 had their hearing screened prior to discharge. Unfortunately, children who needed a rescreen to confirm a diagnosis are sometimes lost to follow-up. And, children who are tested, do not enroll in Early Intervention services. In 2014, 1,369 infants did not pass their initial hearing screen. There is no documentation of rescreening or diagnostic evaluation for 50% (N=689) of these children. For those rescreened, the average age of the infants was 61 days old for the first retest. Only 43% of the 156 cases of permanent hearing loss enrolled in Early Intervention services. In an effort to improve those statistics and make the most of limited state and federal funds, the Virginia EHDI program partnered with the Commonwealth’s Family to Family Health Information Center (F2F) to hire parents of children who are deaf/hard of hearing to act as 1-3-6 Family Educators. In this role, parents move beyond just providing emotional support to families with newly diagnosed children to actively engaging in data collection and systems improvement activities. Following leadership skill development sessions, 1-3-6 Family Educators visit birthing hospital newborn hearing screening teams and audiologists to dialogue about practices related to communicating with families, rescreening, and literacy of information shared with families. Preliminary data collected from hospitals on the effectiveness of the 1-3-6 Family Educator model reveal an increase in the percentage of rescreens and a reduction in the average number of months until a rescreen is completed. 98% of audiologists surveyed following a site visit strongly agree that having a parent in the role of a 1-3-6 family educator helped them see things from a different perspective. Attendees in this session will learn about the model, discuss evaluation results, and contribute to conversation about growing leadership behavior in families.

• Describe creative ways to involve parents in EHDI program design and implementation
• Illustrate examples of materials developed by parents for use with newborn screening teams
• Review evaluation data and discuss collaborative strategies to reduce loss to follow-up

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Dana Yarbrough (POC,Primary Presenter), Center for Family Involvement @ VCU, dvyarbrough@vcu.edu;
Dana Yarbrough is the mother of a 22 year old daughter, Brooke, who despite significant physical, intellectual and sensory disabilities opened her own dog boarding business. Dana serves as the Family Audience Leader at the Partnership for People with Disabilities, Virginia’s University Center for Excellence in Developmental Disabilities located at Virginia Commonwealth University. Among her many roles, Dana directs the Center for Family Involvement that has 22 diverse staff, 17 projects and $1.2 million in funding. Dana holds a masters degree in non-profit leadership and a masters degree in special education secondary transition.

ASHA DISCLOSURE: Financial - Nonfinancial -

AAA DISCLOSURE: Financial - No relevant financial relationship exists.

Daphne Miller (Co-Presenter), Virginia Department of Health, daphne.miller@vdh.virginia.gov;
Daphne Miller is currently the Early Hearing Detection & Intervention Coordinator for the Virginia Department of Health. The EHDI program ensures that infants hearing is screened, diagnosed and referred to Early Intervention if a child has a diagnosis of hearing loss. Daphne has a Bachelor of Science in Business Administration and has worked with families and children over 15 years. In her spare time she enjoys binge watching shows, listening to music and spending time with family and friends. Daphne resides in Richmond, Virginia with her husband and daughter.

ASHA DISCLOSURE: Financial - Nonfinancial -

AAA DISCLOSURE: Financial - No relevant financial relationship exists.