Last Modified: 06/14/2023
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]
- Click here to post this badge on your website
- Click here to post the Spanish language badge on your website
Parent Roadmap
Learning About Hearing Loss:
A Roadmap for Families [PDF]
Parent Roadmap (en español) [PDF]
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]
- 2015 EHDI E-Book Chapter 18: 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
- National Cued Speech Association
- Association of Maternal & Child Health Programs: Family Engagement in Title V Programs: How states sustain and diversify engagement to improve quality
- 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 and sent to your home address.
- Laurent Clerc National Deaf Education Center: Info to Go
