EHDI Programs and the Deaf and Hard of Hearing Community: Working Together

Submitted by Debra.Patkin [1] on Wed, 03/17/2010 - 16:39

Early identification of children who are born deaf or hard of hearing is critical to ensure that their families have the resources they need to help their children acquire language, and achieve age-appropriate communicative, cognitive, academic, social, and emotional development.  Despite the establishment of state newborn hearing detection and intervention (EHDI) programs, a lot of work remains. 

A key ingredient to the success of an EHDI program is deaf and hard of hearing community participation. The National Association of the Deaf (NAD) believes such participation is essential to ensure that every family gets the care, information, and services they need.  Deaf and hard of hearing infants must be given the opportunity to acquire American Sign Language (ASL), a fully accessible visual language, as early as possible, including the opportunity to access and acquire the spoken language(s) used by their families through the use of assistive technologies and other strategies.  

The NAD is strongly committed to ensuring that parents of newly identified deaf or hard of hearing infants receive accurate information about the benefits of acquiring and developing proficiency in both ASL and English.  Such efforts necessitate the recruitment and participation of the deaf and hard of hearing community.

Together with the Deaf and Hard of Hearing Community, Support Families in Your Community

The NAD encourages an open exchange of information between EHDI professionals and members of the deaf and hard of hearing community in order to provide maximum support to families of deaf and hard of hearing children.  It is crucial for families to have the information they need – including information about deaf and hard of hearing adults who know and use ASL– so their decisions can be fully informed. 

Getting Deaf and Hard of Hearing Community Members Involved

The NAD urges EHDI programs and professionals to adopt the following initiatives:

• Invite Deaf and Hard of Hearing Community Members to Every EHDI Meeting.  Provide ASL interpreters and related accommodations to ensure full access to EHDI meetings.
• Appoint Deaf and Hard of Hearing Community Representatives to Your State’s EHDI Advisory Panel.  Advisory Panels include medical and educational professionals, as well as parents; these must also have designated seats for deaf and hard of hearing community representatives.  Outreach by EHDI programs are needed to inform the deaf and hard of hearing community of the opportunity to have their experiences and knowledge shared with others, particularly about the value of ASL.
• Highlight Deaf and Hard of Hearing Community Members in State and National EHDI Conferences.  Conference organizers must seek and include workshops and presentations by deaf and hard of hearing community members and professionals that address the importance of visual language, identity, cultural competencies, interplay between deaf and hearing communities, and other issues of importance to the deaf and hard of hearing community.
• Identify, Develop, and Advertise ASL Resources for Families.  EHDI programs must provide families with the information they need to learn about the benefits of ASL and the opportunity to learn ASL through a wide range of instructional settings and interactions with members of the deaf and hard of hearing community.
• Establish and Operate Deaf and Hard of Hearing Mentorship Programs.  States and communities must have programs that link deaf and hard of hearing adults with families of deaf and hard of hearing children.  Mentors may help the family learn ASL, provide communication strategies, and/or serve as a role model.  The program provides training and information to the mentor so that he or she can be most effective.  To find out if a mentor program exists in your state or community, contact your state’s EHDI program (see infanthearing.org/states/index.html), state association of the deaf, state office/commission for deaf and hard of hearing, and/or school for the deaf.
• Adopt Family Support System for Families that Use ASL.  Families that are considering ASL for their young children will benefit from a support system of peers established by EHDI programs.
• Encourage Active Deaf and Hard of Hearing Community Role in Parent and Professional Organizations.  Many organizations depend on knowledgeable volunteers to help them conduct their activities and can benefit tremendously by having deaf and hard of hearing participants. 
• Encourage Informal Networking.  EHDI professionals and members of the deaf and hard of hearing community must work together to determine best practices to become resources for parents who are learning about raising a deaf or hard of hearing child. 

Further Information

• National Association of the Deaf: http://www.nad.org [2]
• State Associations: http://www.nad.org/community/state-association-affiliates [3]
• State Commissions and Offices serving Deaf and Hard of Hearing Constituents: http://clerccenter.gallaudet.edu/Clerc_Center/Information_and_Resources/Info_to_Go/Resources/Statewide_Services_for_Deaf_and_Hard_of_Hearing_People.html [4]

Please share this webpage and document with others: http://www.nad.org/sites/default/files/2010/February/EHDIProgramsandtheDHHCommunityWorkingTogether.pdf [5]