Most parents assume their infant can hear, “I love you,” Along with all the wonderful sounds that fill a child’s life such as music, crackle of leaves, the whispers of a caring relative or pet noises. However, there are a number of children that cannot hear these sounds. Did you know approximately 95 percent of babies with a hearing loss are born to hearing parents and over 50 percent of babies born with hearing loss have no known risk factors for hearing loss? Of the over 39,000 babies born in Iowa each year, approximately 100 will be diagnosed with a hearing loss shortly after birth. Another 2 to 3 percent will be diagnosed with late onset hearing loss. Due to the development of speech and language in the earliest months of life, follow-up testing is important. If a hearing loss is detected early, much can be done by families with the support of their team to encourage language development.
This page was inspired by parents for parents as a guide to learn more about newborn hearing screening, diagnosis of hearing loss in a child and resources available to help your child and family. No matter where you and your family 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.
There is a while community here to help
- EHDI Staff - We are here to answer questions families have, assist in ensuring timely follow up and help navigating available resources.
- Communicate with Your Child – Information detailing the screening process and questions that you may have as parents.
- EHDI-PALS - A collection of links to resources, information and services for children with hearing loss.
- Iowa Family Support Network – Resource for families and providers to locate screening, diagnostic assessment centers and early intervention providers in local communities across Iowa. Find the Early ACCESS referral form here.
- My Baby’s Hearing – Supportive resource if your baby has been referred for a second screening test.
- Just in Time in English or Spanish – CDC Presentation on the importance of timely screening.
- ¿Que tan bien oye su hijo? Lo que los padres deben saber?
- Take a look at the English Parent Fact Sheet or Spanish Parent Fact Sheet (Hoja Informativa) for an overview of the hearing screening process.
State and National Resources
There is a whole community of people passionate about helping those with hearing loss connect to the resources and organizations they need. Below you will find a number of state and national resources available to you.
Disclaimer: The following list of Web links is not exhaustive, but a place to begin for those interested in learning more about early hearing detection and intervention programs, hearing loss, and family support. Each Web site below provides additional resources.
ASK stands for "Access for Special Kids." The ASK Family Resource Center is a "one-stop-shop" for children and adults with disabilities and their families. Through its member organizations, the Center provides a broad range of information, advocacy, support, training, and direct services.
CDD is a resource for people of all ages in who have disabilities of all kinds. It hosts a disability resource library free to people with disabilities and their families.
The Center for Genetics, in partnership with the University of Iowa and health care providers throughout the state, has developed programs that are designed to address all steps of the life cycle: prenatal, neonatal, pediatric, and adult. The mission is to advance the health and well being of children and adults with genetics conditions and special health care needs in partnership with families, health and human service providers and communities.
CHSC is a public health program whose mission is to improve the health, development and well-being of children and youth with special health care needs. CHSC works in partnership with families, service providers, communities, and policymakers.
DAC is a private, non-profit agency governed by deaf consumers, and dedicated to providing services in the deaf and hearing communities. Some services include oral interpreting, sign language instruction, TTYs and assistive devices, and advocacy workshops.
DSCI is located within the Iowa Department of Human Rights and was established to serve, represent and promote a greater understanding of deaf and hard-of-hearing individuals, from infancy through adulthood, in the state of Iowa.
Deaf Services Unlimited is an organization committed to providing individuals, businesses, and agencies with a comprehensive range of quality communication services including sign language interpreting and captioning.
ECI's website was created to provide FREE, objective, medically accurate early care, health, and education information for families in Iowa. Browse their database for great resources or take a look at the Early Childhood A to Z section for topics
AEAs provide many early intervention services for children who are deaf and hard-of-hearing. These include services to infants, toddlers, and their families, and to school-age children who require special education services. Both early intervention and special education services are at no cost to families.
Iowa COMPASS is Iowa's free, statewide information and referral service for people with disabilities, their families, service providers, and other members of the community.
Iowa Deafblind Services Project serves children and young adults age birth through twenty-one who are suspected of having both a hearing AND a vision loss or difficulty in processing auditory or visual information. The project is dedicated to building the knowledge and skills of all stakeholders involved in the education or parenting of these learners. The project is of the belief in using a collaborative, multi-faceted, approach to achieve positive, fulfilling futures for children and youth with deafblindness.
IFSN is the central point of contact and directory for Early ACCESS (Iowa's early intervention services provider), EHDI and other resources such as group-based and family support services. IFSN assists families and professionals in finding local providers of hearing screenings, diagnostic assessments, and early intervention services for young children.
Iowa Hands & Voices is a non-profit, parent-driven national organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
ISD, located in Council Bluffs, is a residential and day program for students who are deaf or hard-of-hearing.
National resources for EHDI
AAP is an organization made up of pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. The AAP site provides information related to newborn hearing screening, practice guidelines, etc. AAP also provides a "Just in Time" Early Hearing Detection and Intervention Educational Kit for free. It is a handy practice resource that helps provide hearing health care for the infant and children.
A nonprofit, membership-based information center on hearing loss. Their focus is specifically on children with hearing loss, providing ongoing support and advocacy for parents, professionals, and other interested parties. Information available to parents includes publications, funding sources, pamphlets, conferences, and scholarship program information. Also: AG Bell Montessori School
A professional membership organization dedicated to providing high quality hearing care to the public. Provides consumer information and locates certified audiologists in a specified area. Web site contains "Ask the Audiologist," which adds to parental and public understanding of audiology.
A nonprofit organization that educates, empowers, and supports parents and families of children who are deaf or hard-of-hearing. Helps families find meaningful communication options, particularly through the use of sign language, in their home, school, and community. A parent listserv and magazine are also available.
National professional, scientific, and credentialing association for more than 93,000 audiologists, speech-language pathologists, and speech, language, and hearing scientists. Provides brochures, fact sheets, and information packets to the general public at no cost. A computerized referral database of audiology and speech-language pathology programs is available to meet individual consumer needs.
Non-profit organization. Provides information concerning hearing loss, hearing aids, and where to go for help.
A nonprofit hospital that is internationally recognized for research and treatment of childhood deafness and communication disorders. Programs include the Center for Audiology and Vestibular Services; the Center for Childhood Deafness, Language, and learning; and the Center for Medical/Surgical Services. Produces videotapes designed to help families learn to sign and to read more effectively with young children who are deaf.
A nonprofit educational, clinical, and research center for individuals with communication disorders of all types. Clinical services specific to hearing loss include complete audiological testing, amplification services, aural rehabilitation classes, and cochlear implant evaluation and habilitation. Summer Listening camp offered one week each summer. Educational programs include specialized services for children with hearing loss, ages 2-5, within an early childhood preschool.
The CDC EHDI program is a program under the Federal Centers for Disease Control (CDC) in Atlanta, Georgia. To ensure that all newborns have the opportunity to communicate from birth, the CDC's EHDI program is a part of continuing national efforts to promote:
• The early detection of hearing loss
• The tracking of infants/children who are deaf or hard of hearing
• The initiation of effective intervention systems
CID is a private, nonprofit institute. It has research laboratories in which scientists study the normal aspects as well as disorders in hearing, language, and speech. It has a school for children who have hearing loss and professional education programs in audiology, education of persons with hearing loss, and communication sciences. CID also has speech, language, and hearing clinics.
A privately funded research foundation committed to finding the causes, treatment, and prevention of all types of hearing loss. Organizes a national campaign aimed at public outreach, professional education, and government relations. Provides parents with a Web site detailing current research findings.
A nonprofit program with a free-loan video collection of approximately 4,000 titles. Provides open-captioned videos, available free of charge to any American with a hearing loss, or to any hearing person involved with hearing loss, such as parents and teachers. Funded by the U.S. Department of Education.
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.
A program funded by the Health Resources and Services Administration to ensure EHDI programs, funded by federal funding in the United States, use research-based concepts known to support families, parents and caregivers of deaf or hard of hearing babies, toddlers and young children identified through newborn hearing screening. The goal is to ensure children reach their optimal language, literacy and social-emotional development.
Affiliated with Gallaudet University, this Community College provides services to students who are deaf and hard-of-hearing, as well as to parents, educators, and educational interpreters in eleven Midwestern states including Texas. Services provided include workshops and seminars in a variety of areas related to improving the quality of education for students with hearing loss, family and parent education programs, needs assessment, technical assistance, and resource and referral.
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. They are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
NCHAM provides training, technical assistance, and information about early identification and management of hearing loss.
A private, nonprofit organization that provides free worldwide family-centered services to young children with hearing loss. Provides correspondence courses and videotapes for parents of infants and children with hearing loss. Courses are available in English and Spanish.