Families

Why is identifying a hearing loss so important?

Hearing loss can affect a child’s ability to develop speech, language, and social skills. The earlier children with hearing loss are identified, the more likely they are to reach their full potential.

Use this website to learn more about newborn hearing screening, diagnosis of hearing loss, early intervention services, family support opportunities, funding, and additional resources available to help your child and family.

No matter where you are in the detection process, you are supported by a whole community working to make sure your child receives the care that is right for them.

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Hearing Screening: All babies born in North Carolina will have a hearing screening before leaving the hospital or birth center. It is important to find babies born with a hearing loss as soon as possible.

Why should my baby be screened for hearing?

Hearing loss needs to be found as early as possible, so you may take actions that give your baby the best chance to develop language.

How is the hearing screening done?

A special machine detects your baby’s response to sound. The screening is simple and does not hurt. It usually takes less than 15 minutes if the baby is sleeping or very quiet. You will get the results before you leave the hospital or birthing center.

What do the screening results mean?

PASS – means that your baby’s hearing appears normal at this time.

DID NOT PASS (also called REFER or FAIL) – means that your baby needs to have another hearing screening within two to four weeks. You may also want to discuss the results with your baby’s doctor.

Where do I take my baby for a rescreen?

Options for rescreening include:

  • Return to the birthing facility
  • Make an appointment with an audiologist
    • This may require a referral from your baby’s pediatrician.
  • Call the NC EHDI Program for assistance (866-431-7434)
    • EDHI Regional Consultants can arrange a hearing screening for you

What do I do if my baby does not pass the rescreen?

If your newborn does not pass the hearing rescreen, it is recommended that he or she sees a pediatric audiologist and has a diagnostic assessment before three months of age.

Learn more about the diagnostic assessment process.

Some babies who pass the hearing screening can lose their hearing at a later age. Hearing loss can develop at any age, so it’s important for you to monitor your child’s hearing health and speech/language development. If you have any concerns regarding your child’s hearing, speech, or language you should talk to your child’s doctor.

Link to: EHDI-Risk Factor RackCard-approved-4x9_ENG.pdf

Resources for you and your family to learn more about newborn hearing screening:

Diagnosis: All babies that do not pass the newborn hearing screening need to have a diagnostic assessment (test) to give you more information about the hearing abilities of your newborn.

Where do I go to get a diagnostic assessment for my baby?
A pediatric audiologist will perform the diagnostic assessment. Not all audiology providers are able to provide this test on young infants. You can find a list of appropriate diagnostic centers by visiting EHDI-PALS.

What is a pediatric audiologist?
A pediatric audiologist is trained in using certain equipment and doing hearing tests on children of all ages. They should have experience testing babies younger than 6 months of age. They mainly work with infants and children.

What is EHDI-PALS?
EHDI-PALS is a web-based searchable national directory. It helps families find pediatric audiology expertise for children ages birth to five. The website provides information about childhood hearing to support families through the process of screening, diagnosis, and intervention.

What should I do to prepare for the diagnostic assessment appointment?
Hearing tests will differ based on the age of the child.
Learn about the different hearing tests that may be used and ask your audiologist for specific information on how best to prepare for your child’s appointment.
If you are taking an infant for a diagnostic appointment, these are some general guidelines to prepare:

  • Wait to feed your baby until just before the appointment begins.
  • Do not let your baby fall asleep before the appointment.
  • If possible, leave other children at home.
  • Bring someone with you for support.

The time leading up to the appointment will most likely be stressful time, but your baby must sleep during the procedure to get a complete evaluation.

What do the results mean?
Ask your pediatric audiologist to explain your child’s results. Your child may or may not have hearing loss.

I need help understanding the medical language and audiological terms.
Your understanding of your baby’s hearing loss will play an essential role in helping your child succeed! There are lots of medical and audiological terms used when communicating about a child’s hearing loss.

Use these links to learn more and improve communication with healthcare professionals

My child has been diagnosed with a hearing loss. What do I do now?
After diagnostic testing shows that your baby has a hearing loss, it is important that conversations begin about intervention options. Learn more about intervention options.

To learn more about the types of hearing loss go to Types of Hearing Loss

Early Intervention
Early intervention is a system of services that helps babies and toddlers with developmental delays or disabilities. Early intervention focuses on helping eligible babies and toddlers learn skills that typically develop during the first three years of life. 

How do I connect with Early Intervention services?
Talk with your child’s pediatric audiologist or your child’s doctor about connecting you with Early Intervention Services.

Who will be helping my child?
If diagnostic testing shows that your baby has a hearing loss, several professionals will work together to help your baby and family.

Professionals may include the following:

  • Pediatric Audiologist - A professional who specializes in testing the hearing of infants and children and recommends hearing aids and other forms of treatment or interventions.
    • Use this website to find a pediatric audiologist near you: EHDI-PALS
  • Pediatrician or Family Practitioner- A doctor who provides health care for infants and children.
  • Ear, Nose and Throat Physician - A doctor who specializes in problems of the ear, nose and throat.
  • Children's Development Services Agency (CDSA) Service Coordinator –They work closely with families to identify their needs and ensure that providers work together to meet those needs. The CDSA is the main agency for the Part C NC Infant-Toddler Program.
  • Early Intervention Teacher – An educator that specializes in working with infants who are deaf or hard of hearing. A teacher will come to your home to work with your child and family.
  • Genetics Team - A group of professionals that help counsel on the potential genetic component of hearing loss. 
  • Speech pathologist - A trained professional that works with individuals who have speech and language difficulties. 

These documents can be helpful in keeping track of who is helping your child.

What should I ask at my child’s appointment? Start here. The following are potential questions to ask your child’s:

How will my child learn language?
People with hearing loss and their families often need special skills to be able to learn language and communicate. These skills can be used together with hearing aids, cochlear implants, and other devices that help people hear. There are several approaches that can help, each emphasizing different language learning skills. Some families choose a single approach because that’s what works best for them. Other people choose skills from two or more approaches because that’s what works best for them.

  • Auditory-Oral
    Natural Gestures, Listening, Speech (Lip) Reading, Spoken Speech
  • Auditory-Verbal
    Listening, Spoken Speech
  • American Sign Language
  • Bilingual
  • Cued Speech
    Cueing, Speech (Lip) Reading
  • Total Communication
    Conceptually Accurate Signed English (CASE), Signing Exact English (SEE), Finger Spelling, Listening, Manually Coded English (MCE), Natural Gestures, Speech (Lip) Reading, Spoken Speech

Use this CDC Website to learn about different communication tools.

Explore all your options. No matter what communication option you choose for your child, the most important thing is that your child begins learning language as early as possible.

Work with your providers to determine which option(s) is/are best for you and your child. Once your child is enrolled in early intervention, they will have the help of many professionals. It can also be beneficial to get help from other families.

Other Resources
Communicate With Your Child

Family Support Service and Resources:

As a family who is learning about your child's hearing loss, we know you may be feeling many emotions. A valuable resource is Family Support. Family support is a way to connect with other families who have children with hearing loss. Families often feel empowered when they talk to other families who have been on a similar journey and are able to share their story and provide unbiased support. We encourage you to learn about family support resources available in North Carolina to support your family's needs.

Family Support Resources in North Carolina

EHDI Regional Consultants and Parent Consultants:

EHDI has ten regional consultants and two parent consultants, one of whom is bilingual in English and Spanish. Our staff can help connect your family to available resources.

Look at the regional map to find the consultant who serves your region.

NOTE: Parent consultants provide service to the entire state.

The EHDI Parent Support Team

The Early Hearing Detection and Intervention (EHDI) Parent Support Team is a diverse network of parents formed to provide parent-to-parent support for families that have a child who is deaf or hard of hearing. Each parent mentor has been trained to provide support for your family in an unbiased way as you and your child navigate the journey of hearing loss. The role of the parent mentor is to listen, help when asked, and connect you to various parent resources available in our state. 

See the Parent Support Team flyers for more information.

The EHDI Family Focus Email

This is a monthly email specifically designed for families who have children that are deaf or hard of hearing. At the beginning of each month, you can receive an email that:

  • Spotlights a resource in NC for D/HH kids and their families
  • A list of community events for families with D/HH kids
  • Facts and information to help you advocate for your child
  • Personal Stories of families with D/HH children in NC

If you are interested in receiving this monthly email from NC EHDI - You can Subscribe here.

The email is currently available in English but a Spanish Family Focus Email is under development.

The Care Project

The Care Project is a nonprofit organization dedicated to bringing hope to families who have children and/or adults with hearing challenges through counseling experiences aimed at the processing of the emotional stages of grief. Family retreats are organized, funded, and hosted by The CARE Project.

BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing

BEGINNINGS assists parents of children who are deaf or hard of hearing, deaf parents with hearing children and professionals serving them from birth through age 21 by providing information and support to empower them as informed decision-makers. Support is provided by helping parents access services, promoting early identification of hearing loss and awareness of early intervention programs and educational services.

Hearing Impaired Toddlers and Children Have Unlimited Potential (HITCHUP)

These groups are organized and led by parents of children with hearing loss and share information and support with other families at several locations across the state.

HITCHUP operates mainly via Facebook.

  • NOTE: For Facebook pages, you may be prompted to log in to your personal Facebook account before you are taken to the HITCH-UP page. These are private groups so you will need to submit a request to join the group.
  • Triangle
  • Charlotte
  • TRIAD

  • Spanish Family Support Facebook Groups:
     

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Triunfa Caracol Latino: Este es un grupo de apoyo para los padres y cuidadores de niños sordos o con dificultad auditiva. Por este medio nos podemos aconsejar, compartir experiencias o publicar los logros y desafíos que enfrentamos día a día con nuestros niños mientras navegamos en un mundo desconocido. Todo en un ambiente familiar, seguro y privado. Formando nuestra propia comunidad Hispana sorda o con dificultad auditiva en Carolina del Norte. ¡Estamos Juntos en esto!

Conéctese con otras familias en persona o virtualmente, compartiendo sus experiencias y guiando a otros, con el apoyo de las comunidades Latinas de Carolina del Norte y participando en las diversas actividades que estos grupos ofrecen ya que así será más fácil comprender los caminos de la dificultad auditiva.

Únase a nosotros a través de los siguientes enlaces II entrando al área más cercan a usted:

REAL COHL: Realizing, Empowering, and Learning for Children Of Hearing Loss

Iredell County REAL COHL (Pronounced "real cool") is for families and friends of children who are Deaf or hard of hearing. The focus of this group is to empower and support members. We are here to uplift and encourage others on the same journey. We will share resources, success stories, progress and grow pride in our little ones. REAL COHL welcomes all families of deaf and hard of hearing children, regardless of their chosen mode of communication.

CODA Connections, Inc.

CODA Connections, Inc. is a 501(c )3 non-profit established to serve Deaf families and Children Of Deaf Adults. They strive to connect Deaf families and children to critical resources to ensure each family member reaches their full potential.

Camps

  • Camp Cheerio (May)in Glade Valley, NC for deaf and hard of hearing children and their families of all ages.
  • Camp Dogwood (September)in Sherrills Ford, NC for Deaf-Blind adults and teens.
  • Camp Woodbine (October)in Raleigh, NC is for hearing impaired children age 3 and above and their families. Free.
  • Sertoma Deaf Camp (August)in Ellerbe, NC is for children ages 8-16 who are deaf, hard of hearing, or signing.

Support resources for general special needs:

Exceptional Children's Assistance Center (ECAC) is dedicated to empowering families and improving lives, particularly for North Carolina families raising children ages 0 to 26 with disabilities. As a non-profit organization operated by and staffed primarily with parents of children with disabilities, we understand the needs of families as they navigate the special education process.

Family Support Network (FSN) of North Carolina enhances the lives of children who have special needs by providing support, education, and caring connections to their families. Find an FSN affiliate program that services your county.

First Resource Center connects individuals with disabilities and their families with the resources they need to thrive in the community including coordinating with government agencies, schools, or community partners. Serving Buncombe, Henderson, and Madison counties.

Children with Special Health Care Needs Help Line (1-800-737-3028)is a toll-free contact for those living with, caring for, or concerned about a child with special health care needs. Callers can learn about health care programs as well as funding resources available to North Carolina residents.

NCCARE360 is the first statewide network that unites health care and human services organizations with a shared technology that enables a coordinated, community-oriented, person-centered approach for delivering care in North Carolina. NCCARE360 helps providers electronically connect those with identified needs to community resources and allow for feedback and follow up.

 

Medical care for hearing loss can be expensive. You can explore the resources below to find ways to pay for services and devices.

North Carolina Resources:

Assistive Technology (AT) through the Children’s Developmental Services Agency (CDSA) is an Infant-Toddler Program service. Decisions about AT needs are made by the Individual Family Service Plan (IFSP) team.

BEGINNINGS Grants to Parents Program helps North Carolina families with children birth to 22 who have a relationship with BEGINNINGS. Assistance is available for transportation costs, therapies, devices, services, or parent education associated with their child’s hearing loss, for which no other source of funding is available.

Carolina Children's Communicative Disorders Program (CCCDP) provides communication devices, as well as UNC physician, audiological, and speech services for qualifying children with hearing and other communication disorders.

Early Hearing Detection and Intervention (EHDI) program provides funding for hearing aids not covered by insurance for children ages 0 to 3 who are diagnosed with permanent hearing loss at no cost to the family.

DHHS-Form-3014.

Hearing aid post evaluation dispensing form.

North Carolina Medicaid serves low-income parents, children, seniors, and people with disabilities.

North Carolina State Education Assistance Authority (NCSEAA) offers three programs that expand school choice for eligible students in kindergarten through 12th grade. The Opportunity Scholarship, Disabilities Grant, and Education Savings Account can cover tuition and required fees at a participating nonpublic school. In addition, the Disabilities Grant and Education Savings Account can cover certain other expenses related to educating a child with a disability.

National Resources:

Funding Assistance for Audiology Services offers suggestions on where to find funding resources in your community.

Hearing Aid Loaner Programs are a resource that can provide immediate, though temporary, access to appropriate amplification for young children with hearing loss whose parents choose that option.

Hearing Loss Association of America (HLAA) features information about how to pursue financing for hearing devices via private insurance, Medicaid, Medicare, and charities.

HIKE Fund helps provide hearing devices for children from ages of birth to 20 years. This is an extensive, six-page application that requires a family letter as well as a prescription from the doctor.

The Starkey Hearing Foundation’s Hear Now program will fund hearing health for deserving pediatric patients, especially teens, in the US. For more information about the Hear Now program, providing charitable hearing health services for a US child-in-need, please contact the Starkey Hearing Foundation.

United Healthcare Children's Foundation (UHCCF) provides grants for medical-related services that have the potential to enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan, including hearing aids and speech therapy.

North Carolina resources that may help you navigate your child’s hearing loss:

Communication Services for the Deaf and Hard of Hearing (CSDHH) is a non-profit agency that works on the local level to empower and inspire change through community outreach and advocacy. Includes information about captioning, interpreters, sign language classes, silent dinners, and the T.A.G. Mentoring Program.

The Division of Services for the Deaf and Hard of Hearing (DSDHH) works to ensure that all Deaf, Hard of Hearing, or Deaf-Blind North Carolinians have the ability to communicate their needs and to receive information easily and effectively in all aspects of their lives, especially their health and well-being. Services are provided through its seven North Carolina regional centers. Deaf, Hard of Hearing and Deaf-Blind individuals, family members, professionals, agencies and individuals seeking information or assistance have access to these services for no charge.

North Carolina Association for the Deaf (NCAD) is a non-profit organization founded that oversees important educational, civil, health and social issues of deaf, hard of hearing and deaf blind citizens in NC.

North Carolina Public Schools, Exceptional Children Division, Deaf and Hard-of-Hearing Statewide System of Support serves as a support to local education agencies, including charter schools, and the two schools for the deaf. Consultants for the Deaf and Hard-of-Hearing Program are available for consultation in program planning and development, training, mentoring and technical assistance that lead to a quality education for students who are deaf or hard-of-hearing.

North Carolina Schools for the Deaf

Eastern North Carolina School for the Deaf (ENCSD) (Wilson Campus) provides individualized comprehensive educational, vocational, and residential programs for deaf, hard of hearing, and deaf-blind students leading to productive, independent, and successful lives.

North Carolina School for the Deaf (NCSD) - Western (Morganton Campus) is a day/residential facility for the education of children who are deaf and hard of hearing holding dual accreditations from the Council of Educational Administrators for Schools for the Deaf (CEASD) and Advanced Education. NCSD boasts a rich, 125-year history, honoring tradition and culture, and improving academic and postsecondary outcomes for its students.

National resources may help you navigate your child’s hearing loss:

American Society for Deaf Children (ASDC) is a non-profit parent-helping-parent organization promoting a positive attitude toward signing and Deaf culture. It also provides support, encouragement, and current information about deafness to families with deaf and hard of hearing children.

Babyhearing.org was created to answer parents' questions about infant hearing screening and follow up testing, steps to take after diagnosis of hearing loss, hearing loss & hearing aids, language and speech, and parenting issues.

Boys Town National Research Hospital is internationally recognized as the leader in hearing research.

Communicate with Your Child presents introductory information about newborn hearing screening.

Division for Early Childhood (DEC) promotes policies and advances evidence-based practices that support families and enhance the optimal development of young children (0-8) who have or are at risk for developmental delays and disabilities.

Ear Community offers a supportive community for individuals who were born with Microtia and Atresia, Hemifacial Microsomia, Treacher Collins Syndrome, and Goldenhar Syndrome, including varying degrees of hearing loss.

Fostering Joy is a movement to celebrate the magic of raising children who are Deaf or Hard of Hearing.

Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing.

Hands and Voices Phone App. The app is designed especially for the needs of parents of children newly identified as deaf or hard of hearing (D/HH) and navigating a new path with their child. Each day for 90 days, parents receive 4 valuable tools: wisdom from experienced parents, insight from adults who are D/HH, articles related to raising a child who is D/HH and a Resource/website to explore. The app is available for android and iOS. Search “Hands & Voices” in your app store to locate it.

Hear to Learn is a learning resource available from NCHAM to help parents of young children support spoken language development. Spanish website available.

Learn the Signs. Act Early Program, developed by the Centers for Disease Control and Prevention (CDC) aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need. From birth to 5 years, children should reach milestones in how they play, learn, speak, act, and move. This program helps parents track their child’s development and act early if they have concern. To learn about the program, go to: https://youtu.be/9Ithxd5KWhw or https://youtu.be/uD68lmY9TWI (in ASL).

Listening and Spoken Language Knowledge Center for children and adults with hearing loss, their families and the professionals who support them.

National Association of the Deaf (NAD) is the nation's premier civil rights organization of, by and for deaf and hard of hearing individuals in the United States of America.

National Center for Hearing Assessment and Management (NCHAM) serves as the National Resource Center for all Early Hearing Detection and Intervention (EHDI) systems. Every state and territory in the United States has now established an EHDI program. Program staff can help you locate services in their state. State EHDI Program website addresses can be found at this link.

National Center on Deaf-Blindnessis a national technical assistance center funded by the federal Department of Education, NCDB works to improve the quality of life for children who are deaf-blind and their families.

National Cued Speech Association supports effective communication, language development and literacy between individuals, families, infants and children alike through the use of Cued Speech.

Signing Time was created to help all parents and children better communicate. Our vision of the world is one in which all children -- regardless of their abilities -- can express themselves, feel valued and understood, and be supported in achieving their full potential.

The Laurent Clerc National Deaf Education Center is a federally funded program on the campus of Gallaudet University that provides information, training, and technical assistance for parents and professionals to meet the needs of children birth to age 21 who are deaf or hard of hearing.

The Signing Exact English Center (SEE) provides training and support for those who use Signing Exact English. The center provides resources, workshops, and consulting services related to communication, in general, and SEE, in particular.

Social Media:

There are lots of social media support groups that exist. Find the ones that best meet the needs of your family and request to join.

Disclaimer

The NC EHDI Program makes no warranty of the accuracy, completeness or timeliness of this information, and shall not be liable for any decision made in reliance on this information. It is the user's responsibility to verify this information.