Last Modified: 01/06/2016
Family Support and Partnership
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
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
- 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.
- 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
- 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....
- 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
- 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
- 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
- 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
- Powerful Partnerships: A Handbook for Families and Provider Working Together to Improve Care
- Positioning the Family and Patient at the Center: A Guide to Family and Patient Partnership in the Medical Home [PDF]
Other Resources that may be of interest:
NCHAM Pages and Materials
- Links to Family Support Resources on the Web (other professional and family-led organizations)
- The Hands & Voices Communicator: The News Source for Family Support (featured articles)
- Wisconsin's Interactive Notebook
- Scripts for Communicating with Parents [PDF]
- EHDI E-Book Chapter 17: Family Support and Cultural Competence [PDF]
- EHDI E-Book Chapter 21: Deaf Community Support for Families: The Best of Partnerships [PDF]
- Universal Newborn Hearing Screening, Diagnosis, and Intervention - Guidelines for Pediatric Medical Home Providers: AAP Flowchart (AAP/ NCHAM Collaboration) [PDF]
Other Materials and Websites
- Catalyst Center Family Resources: a directory of organizations and resources to help families of children and youth with special health care needs, listed by state. Also available in Spanish.
- Catalyst Center Affordable Care Act Fact Sheets for Families
- Alaska's EHDI Parent Resource Manual
- Department of Education - Opening Doors [PDF]
- Department of Education - Opening Doors (Spanish) [PDF]
- Understanding the Genetics of Deafness (Harvard University) [PDF]
- Beginnings of North Carolina
- Mom Chats and Letters from Kids: Wyoming Team Provides Support to Families with Hearing Loss
- Loss to Follow up resources for families Loss & Found Video
- Parent Information Package from NSF Science of Learning Center, Visual Language and Visual Learning (VL2)
- The VL2 Parent Information Package, “Growing Together,” is a collection of research-based resources for hearing parents of deaf and hard of hearing children. It is intended to share the science of learning on visual language and visual learning and research-based information related to ASL/English bilingualism. The VL2 Parent Information Package comes in two forms: 1) files which can be downloaded, printed, and mailed (see the "Parent Package" tab on the top of the screen), and 2), additional resources and information in this website. Available on a limited basis, a mailer with the package contents can be requested at VL2@gallaudet.edu and sent to your home address.