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.
State and Local
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
The Iowa Department of Public Health's EHDI also known as the newborn hearing screening program works to ensure that all babies in Iowa have their hearing screened and receive needed follow up services such as community providers, early intervention or family support.
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.
State organization of, by, and for the deaf. It is an organization providing support and encouragement to deaf Iowans while working on issues that affect a deaf person's education, work, or everyday lives.
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
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.
A nonprofit, international organization serving children with hearing loss, their families, and the professional community. Provides information about the choice of listening and speaking strategies for children who are deaf or hard-of-hearing through education, advocacy, and family support. Also provides quarterly newsletter, membership directory, and educational scholarship opportunities for professional members.
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.
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.
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.
Deaf Linx is a resource for information on deafness, deaf culture, American Sign Language (ASL) and all other related topics.
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 organization aimed at integrating people with hearing loss into the mainstream of society through public awareness and medical education. Provides an educational pamphlet targeted for children from kindergarten through 3rd grade. Also administers the Meniere's Network, a national network of patient support groups.
EHDI-PALS is a web-based link to information, resources and services for children with hearing loss, including a national, web-based directory of facilities that offer pediatric audiology services to young children who are younger than five years of age.
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.
A nonprofit domestic program of the Starkey Foundation that increases public awareness about the need for available and affordable assistive technology for people with hearing loss. Provides hearing aids to people with limited financial resources.
A nonprofit organization of volunteers, doctors, speech-language pathologists, audiologists, and other professionals. Provides services aimed at improving the quality of life and programs for deaf families, hearing families with children who are deaf, parents who are deaf with hearing children, and seniors who are deaf.
A privately funded, nonprofit research and professional education facility that investigates the causes of hearing loss and vestibular disorders. Provides outreach programs such as family camps and seminars. Web site provides educational information related to hearing health.
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.
Members of numerous professional organizations joined to create this committee. They produced a position statement ("Principles and Guidelines for Early Hearing Detection and Intervention Programs") in 2000 that is widely used to determine best practice in pediatric audiology.
A nonprofit consumer organization safeguarding the civil rights of persons who are deaf and hard-of-hearing in education, employment, health care, and telecommunications. Provides grassroots advocacy and empowerment, deafness-related information and publications, legal assistance, policy development, public awareness, and youth leadership development.
NCHAM provides training, technical assistance, and information about early identification and management of hearing loss.
A nonprofit association that promotes and supports the use of cued speech for communication, language acquisition, and literacy. Provides information, referral, and support services for persons with language, hearing, speech, and learning needs. Sponsors family camps, workshops, conferences and scholarships. Distributes a catalog, newsletter, and journal on cued speech and hearing loss.
A federally funded organization that responds to inquiries about a diverse range of topics related to people age birth through 21 years who are deaf or hard-of-hearing. The clearinghouse also collaborates with authors from within the Gallaudet community and around the nation to design, produce and disseminate books, videotapes, periodicals, and other information related to deaf and hard-of-hearing children, their families, and the professionals who serve them.
A nonprofit organization affiliated with the National Institutes of Health. Conducts research and research training on normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. Provides a newsletter and other materials that educate the public and health professionals about its seven research areas in communication. Web site contains sections for parents that cover topics related to hearing loss.
A private family foundation that advocates oral deaf education The foundation distributes a variety of free educational materials (videos and pamphlets) for parents and professionals.
Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health concern. Through a one-to-one “match,” experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs are committed to listening and learning from families and developing an array of services and supports in response to family identified needs.
There are nearly 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US and Territories. These Centers perform a variety of direct services for children and youth with disabilities, families, professionals, and other organizations that support them. Some of the activities include; working with families of infants, toddlers, children, and youth with disabilities, birth to 26; helping parents participate effectively in their children’s education and development; and partnering with professionals and policy makers to improve outcomes for all children with disabilities
A nonprofit, grant funded institute that develops programs and materials and provides workshops for professionals working with families of infants and young children who have a special need. The SKI-HI Model for Family Centered Home-Based Programming for Infants, Toddlers, and Preschool-Aged Children with Hearing Impairment is widely used by early intervention programs in both the United States and Canada.
A national advocacy organization that promotes equal access to telecommunications and media for people who are deaf, late-deafened, hard-of-hearing, or deafblind. Provides public education and promotes consumer involvement in policies which support accessibility. Publishes an annual, national directory of TTY numbers.
