The day parents learn their child is Deaf/ Hard of Hearing is a day they will never forget.  For many families, this diagnosis comes as a complete surprise.  It is also the beginning of a beautiful journey of discovery.  Families, you are not alone on this journey- there are a multitude of professionals that are ready and prepared to walk beside you, support you in this journey and share resources, experiences, and insights along the way. 

The Deaf/ Hard of Hearing Family Navigators are family members, parents, grandparents, and caregivers to children and young adults who are Deaf or living with Hearing Impairment.  We partner closely with the Early Hearing Detection and Intervention (EHDI) team at the Virginia Department of Health.  The goal of Virginia’s EHDI program is to screen infants for congenital hearing loss by 1 month of age, identify and diagnose congenital hearing loss by 3 months of age, and enroll infants in early intervention services by 6 months of age. 

https://www.vdh.virginia.gov/early-hearing-detection-and-intervention/

Educating and empowering parents is vital because it is their job to make decisions that are right for their child and family. Parents are faced with new challenges when they first find out their child has a hearing impairment.  What communication and language methods (American Sign Language, Listening & Spoken Language Approach, Total Communication and more) will they be using with their child?  Will their child wear a device(s) to aid their hearing impairment (hearing aid(s), bone-anchored-hearing-aid(s), and/ or cochlear implant(s))?. Services and the professionals will change often throughout our lifetimes, which is why the family education component is so critical. With the support of DHH Family Navigators, parents will be in a better position to advocate for their child.

In 2014, 1,369 babies did not pass the newborn hearing screening before leaving the hospital. 50% of those babies (689) did not go back for another test to determine if their baby had any hearing loss. In response, through a collaborative agreement with the Virginia Department of Health EHDI Program, the Center for Family Involvement trained parents as 1-3-6 Family Educators. 1-3-6 Family Educators visited birthing hospital newborn screening teams and audiology clinics across Virginia to talk about their hearing screening practices and how to get infants back for another test of their hearing.

The 1-3-6 Family Educators are now known as the Deaf/ Hard of Hearing (DHH) Family Navigators, but the crux of the mission remains the same.  To support families along their journey from diagnosis of Hearing Impairment and beyond, providing emotional support, connection to other families, as well as access to state and national resources. 

In September of 2020, Virginia began implementing a targeted screening program to identify babies born with Congenital Cytomegalovirus (CMV).  Congenital CMV is the leading cause of non-genetic hearing loss in infants and the leading viral cause of disabilities.  1 in 200 babies born in the U.S. are infected with congenital CMV which can lead to a wide range of impacts from birth and beyond.   

Per state legislation, when a baby born in Virginia does not pass their newborn hearing screening at the hospital or birthing center, that baby is to be screened for CMV.  If the baby fails the screening, a CMV PCR urine test is to be completed (with the assistance of the baby’s Primary Care Physician/ Pediatrician) within the first 21 days of life.  Families who have a child born with cCMV can also connect with the DHH Family Navigators via the Center for Family Involvement Helpline.   

To get parent support, learn more about the DHH Family Navigator Program, or find resources for children who are Deaf/Hard of Hearing, please email Lisa Eickel at eickell@vcu.edu or call the Center for Family Involvement Helpline at (877) 567-1122. 

Mailing Address:
Partnership for People with Disabilities
P.O. Box 843020
Richmond, Virginia 23284-3020

TTY RELAY: (800) 828- 1120
CFI HELPLINE: (877) 567-1122
EMAIL: cfihelpline@vcu.edu