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NCHAM: National Center for Hearing Assessment and Management, Utah State University

Last Modified: 08/21/2014

Family Support and Partnership

a mother holding her baby close in a cloth sling, both smiling

Family support is an essential component of an effective EHDI system. EHDI coordinators and other stakeholders, such as the medical home and audiologists, have a responsibility to ensure:

  • Families are supported: EHDI systems must ensure that families get access to culturally-competent information to help them make informed decisions. This also includes providing access family support groups to help provide emotional support as only other caregivers can offer.
  • Families are partners in decision making: EHDI systems must honor family decisions about what is best for their own child and family. At a systems level, families with diverse perspectives can offer their expertise to guide EHDI practices and policies, resulting in more family-centered EHDI systems.

Just in Time Tool

Just In Time Tool

The "Just in Time" tool [PDF] is designed especially for family organizations to help them in their job to support families. It contains the most essential resources identified by both families and professionals to address hearing-related needs. Family organizations, such as Family Voices, Family-to-Family Health Information Centers, Parent Training and Information Centers, and Parent-to-Parent USA chapters are invited to do the following:

  • Post it on your website, allowing the hyperlinks to take the reader directly to critical information.
  • Highlight the resource in your next staff meeting or conference call.
  • Send it electronically to your local and state partners so they also can use it.
  • Have it available as a hard-copy handout to share with families who prefer that format.
  • Note the emphasis on resources with information available in other languages.
  • Download the "Just in Time" tool (en español) [PDF]

“Just in Time” Hearing-Related Resources for Families

Where do you get information for families when they have a concern about their child’s hearing or are in need of resources? Here are essential sources of information that you can provide to meet families’ needs – just in time!

First Responders: The Essential Resources

communicatewithyourchild.org
Communicate With Your Child
  • Family-friendly information about what to do when their baby fails the hearing test, what to do if they’re worried about their child’s hearing
  • Print materials available: Downloadable brochures and state-specific inserts
  • State-specific Contact Information Available
  • Multiple Languages: Available in English, Spanish, Chinese, Tagalog, Korean, and Vietnamese.
handsandvoices.org
Hands and Voices
  • A nation-wide parent-driven, parent/professional collaborative group
  • Provides unbiased information about communication modes and methods
  • Print Materials available: Resources for communication, assistive devices, early intervention and special education rights
  • State-specific Chapter Information available
  • Multiple languages: Some state pages are in Spanish and English
babyhearing.org
My Baby's Hearing: Version en español
  • Developed by Boys Town National Research Hospital
  • Answers questions about infant hearing screening and follow up testing, steps to take after diagnosis of hearing loss, hearing devices, language & speech, and parenting issues
  • This site is currently being updated and expanded, so you will find a new look and new content in the near future
  • Multiple languages: Available in Spanish and English

More Helpful Resources....

Centers for Disease Control and Prevention: A Parent’s Guide to Hearing Loss
CDC: Centers for Disease Control and Prevention
  • Features programs and services about understanding hearing loss & how hearing is tested; finding professionals with expertise in serving babies with hearing loss; fitting a baby with a hearing device, and family support groups
  • Lists national organizations and state contacts
  • Multiple languages: Available in Spanish and English
hearingloss.org: Financial Assistance: Programs & Foundations
Hearing Loss Association of America
  • Information about how to pursue financing for hearing devices via private insurance, Medicaid, Medicare, and charities
  • State Specific information: State regulations pertaining to laws covering hearing aids is provided
listeningandspokenlanguage.org
Alexander Graham Bell: Association for the Deaf and Hard of Hearing
  • Offers information about options and considerations on how to select a communication approach for their child
  • Especially useful for families using a listening and spoken language approach
  • Provides information and resources to help families learn how to provide access to communication as early as possible
deafchildren.org
American Society for Deaf Children
  • Oldest national organization founded by and governed by parents of deaf and hard of hearing children
  • Supports and educates families as well as advocates for high quality programs and services
  • First Year Free membership available for families who have deaf or hard of hearing children
  • “Deaf Autism America” strives to enhance the quality of life for Deaf and hard of hearing children with autism

Resources for Building Family-Professional Partnerships

Other Resources that may be of interest:

Also see The Hands & Voices Communicator: The News Source for Family Support (featured articles)