Many families report a sense of helplessness and anxiety upon learning that their baby is deaf or hard of hearing, and connecting to someone who can truly say "I know just how you feel" can provide unique and critical support.
The benefits of the encouragement and assistance that can be provided by an individual who has been down a similar path is the motivation behind Hands & Voices' Guide-By-Your-Side Program. This program is designed to provide the unique support of experienced families of children who are deaf, hard of hearing and deafblind to families at the time of their child's identification of hearing loss, as well as at other crucial times throughout the parenting years.
Guide-By-Your-Side (GBYS) is an innovative program designed to provide emotional support and specialized knowledge from trained parents of children who are deaf or hard of hearing. The GBYS program can:
Help make connections with at-risk and newly-identified families who are often lost to follow through services after newborn screening and/or diagnosis.
Provide a cadre of parent mentors who have been trained by Hands & Voices to support families without bias towards modes or methods of communication or educational programming, and to model specialized parenting skills that emphasize meeting the unique needs of a child who is deaf or hard of hearing.
Mentor families through the early intervention years by combining an experienced parent's insight with knowledge of early intervention and educational systems.
Expose families to diverse models of communication--equitably presented--and exemplified by families who represent the Hands & Voices slogan, "What Makes the Choice Work for Your Child and Family Is What Makes the Choice Right."
Influence and improve the systems designed to serve families and their children who are deaf or hard of hearing by providing a recognized role for GBYS mentors in early intervention programs and public education at the decision-making level.
Research-Based Need for Guide-By-Your-Side Program
1. Essential Role Models Hearing parents of hearing children typically rely on models of parenting they've seen within their own circle of family and friends. When a baby is identified with hearing loss, a whole host of new considerations present themselves to parents . These parents will likely have no knowledge base from which to launch into the challenge of raising this child whose experience of life will be substantially different from his/her hearing parents. Indeed, 95% of all deaf or hard of hearing babies are born into hearing families with no prior experience with deafness or hearing loss. Families of deaf children often report that they did not have adequate resources for decision making (Eleweke & Rodda, 2000; Jackson, Becker, & Schmitendorf, 2002). Studies have reported that less than 10% of hearing parents of children who are deaf have frequent contacts with deaf adults (Hintermair, 2000). These studies suggest that parent-to-parent support encourages parents and provides parents with role models as they discover their capabilities as parents and families with a deaf/ hard of hearing child.
2. Social Acceptance Several scholars have suggested that families often feel isolated by stigmatization and social exclusion and by rejection from family and friends (Gregory, Bishop, & Shelton, 1995; Seligman & Darling, 1997). Hintermair (2000) studied the effects of families ' friendships with deaf adults. This study involved interviews with 317 families with children who were deaf. Parents were asked about their contacts with other parents and with adults who were deaf. The results indicated that parents who had many contacts with other parents of children who were deaf and with deaf adults reported less isolation and showed greater emotional bonds with their child, better acceptance of their child, and improved responsiveness during interactions.
3. Parenting Competency and Efficacy "Being a mother or father of a deaf child means assuming a new role and a new set of responsibilities--a role they had not anticipated and for which they probably have had little preparation." (Bodner-Johnson, 2001) In fact, families with children who are deaf may experience uncertainties about parenting skills, difficulty finding information needed to assist with decisions, and the stress of time demands related to intervention. Fifty percent of all married couples with a deaf child report increased stress on their marriage due to time consumed by educational and interventive issues. (Calderon et al., 1998) When families gain experience and knowledge of this new territory, their sense of efficacy increases. Parent mentors are uniquely suited to provide peer support because they are peers -not professionals who can be intimidating to families who may feel vulnerable about their competency parenting a deaf, hard of hearing, or deafblind child.
Specific Potential Applications for GBYS
Parents As Point-of-First Contact: As the research indicates, early parent-to-parent connections can be the most satisfying and successful form of support for newly identified families entering the systems designed to serve them and their baby who is deaf or hard of hearing. A trained, systems-savvy parent mentor can blend their own experience with knowledge of the early intervention process to provide a unique and highly effective form of support.
Parents As Partners: In existing programs where service coordination and early intervention is administered and implemented by state agencies, H&V GBYS parent mentors can add value and build capacity through collaborative partnerships with service providers.
Parent Support After UNHS: Parents react differently upon learning that their baby may/or does have a hearing loss. Some will immediately seek help and support, where others fail to access follow - through services. Families lost to follow - through services represent a costly failure to systems. GBYS mentors can be very effective in connecting to families and facilitating their follow - through with services and supports designed to promote the appropriate emotional, physical, and cognitive development of these children. Successful models of GBYS have been implemented in Wisconsin and Michigan, and in each state, the implementation may vary based on the locale, but it always upholds the H&V values of training, non-biased support, and parent-driven/professional collaboration.
AN IMPLEMENTATION STORY: The Wisconsin GBYS Model:
Wisconsin 's GBYS Program provides an opportunity for a family who has just learned of their child's hearing loss to meet with another parent of a deaf or hard of hearing child who understands what the new family may be experiencing and can answer their questions. The program serves families of children 0-6 years of age.
The WI Guide-By-Your-Side Program provides families with:
the opportunity to establish a supportive relationship with another parent of a child who is deaf or hard of hearing;
unbiased information regarding communication options;
an understanding of the unique needs of infants and young children who are deaf or hard of hearing;
answers to questions or links to other knowledgeable resources available locally, regionally, statewide or even nationally;
a nurturing introduction to the county Birth-to-3 Program, local school district, or other agencies/organizations who may be able to provide you and your child with additional support ;
an introduction to other parent support opportunities available to families of a deaf or hard of hearing child in Wisconsin .
WI's GBYS Program Employs 17 Regional Parent Guides
Regional Parent guides are English speaking parents of children of various ages who are deaf or hard of hearing.
There are 2-4 Parent Guides per region of the state depending on the density of the population. A local Parent Guide will attempt to contact a family within 24 hours of receiving the referral. The Parent Guide will work with the family to find a convenient time to visit with the family in their home.
The Parent Guide will be paid to visit with the family for up to six hours (usually over three visits). Parent Guides may opt to continue to support the family informally beyond the reimbursable six hours
WI's GBYS Program Currently Employs 3 Statewide Bilingual Parent Guides?
The Guide-By-Your-Side Program strives to serve every family in the state of Wisconsin by employing Parent Guides who are bilingual. Currently, we have Parent Guides whose first languages are Spanish and American Sign Language. These guides will travel throughout the state to meet with families whose first language is Spanish or American Sign Language.
How are referrals made to the WI Guide-By-Your-Side Program?
Enrolling in the Guide-By-Your-Side Program is easy, confidential and free.
If a family is interested in meeting a Parent Guide a referral can be made by the audiologist, early interventionist, primary care provider or the family. In other words, anyone can refer to the GBYS Program. Providers make a referral by:
Filling out and sending the Confirmation of Hearing Loss and Report Form to the Wisconsin Sound Beginnings Program at firstname.lastname@example.org with Guide-By-Your-Side Referral checked.
Calling or sending a referral form directly to the Guide-By-Your-Side Program
Parent Consent must be given to so that their contact information may be shared with the Guide-By-Your-Side Program.
A Parent Guide will attempt to contact the family within 24 hours and make the first visit with the family within 2 weeks.
Implementing a Hands & Voices' Guide-By-Your-Side Program in Your State
Guide-By-Your-Side is a necessary and viable option for family support and outreach by health departments, schools, lead educational agencies, early intervention systems, hospital newborn hearing screening and identification departments, Commissions for the Deaf & Hard of Hearing, and parent education and training centers. Applications of this program have been implemented by agencies such as these in Wisconsin, Michigan, Colorado, and Idaho.