Health Equity

Direct Referrals to Parent-to-Parent Support

By Candace Lindow-Davies, H&V Headquarters

Programs offering local parent-to-parent support to families with children who are deaf and hard of hearing(D/HH) are most effective when they can reach all families, regardless of the family’s ability to initiate contact. Direct referrals from Early Hearing Detection and Intervention (EHDI) programs and diagnosing audiologists in a timely manner ensures health equity by providing all families access to trained parent-to-parent support providers who offer resources, information, and emotional support. A new document created by the Hands & Voices FL3 Center, A Case for Direct Referrals to Parent-to-Parent Support Programs, provides guidance to EHDI system stakeholders including, but not limited to state/territory EHDI programs, and family-led parent-to-parent support programs.  With the end goal of increasing family enrollment in parent-to-parent support services no later than six months of age (a HRSA EHDI grant requirement) and ensuring equity for underrepresented populations, EHDI programs and family leaders must work collaboratively to find solutions. 

The Illinois EHDI Program and Illinois Hands & Voices Guide By Your Side Program set out to do just that. After a decade of working together to improve outcomes for children who are D/HH, last year they signed a “DBA” (Doing Business As) agreement so that IL EHDI could make direct referrals to GBYS, opening the gates for more efficient and equitable services and new meaningful quality improvement opportunities.

Illinois had these goals for direct referrals:

• Greater likelihood of providing parent-to-parent support within the national benchmark.
• Family data, including time of enrollment, resources sought, and what type of amplification (if any) the family has chosen freely communicated with the EHDI Program.
• Renewed sense of purpose that fosters Parent Guides to feel more effective, impactful, and connected to the parent professional role.
• Illinois Guide By Your Side (GBYS) connecting families to the next steps of Early Intervention (EI) and clarifying the roles of the EI providers appropriate for a child who is deaf or hard of hearing.
• Illinois families receive knowledge of national, state, and local resources as well as access to the private online social support group.
• Most importantly, Illinois families have a trained parent-to-parent guide to talk with and gain a better understanding of the journey ahead.  

The impact so far:

• Timeliness of parent-to-parent support connections increased: Services could begin often while parents are still on maternity or paternity leave, leading to more connections with fathers, as compared to “an opt in” program where a family has to initiate contact. 
• More families reached: Before direct referrals, the program connected 40 families to support and resources in 2019 compared to 122 families in 2020, a 205% increase. In addition, 29 families were enrolled in parent-to-parent support in January-June 2020, yet that number tripled to 93 families from July to December 2020, even during the pandemic.
• Greater health equity:  Families who identify as other than Caucasian increased from 36% to 52% of families served, which is more in line with Illinois demographics. Also, more families with children who have unilateral, mild, and conductive losses, who can be chronically under-referred, and more rural families who may straddle borders for care were connected with parent-to-parent support. 

Carrie Balian, IL GBYS Program Coordinator, and Ginger Mullin, IL EHDI Coordinator, have this to say about their success, “Direct referrals assist programs to meet national benchmarks, revitalize Parent Guides and most of all serve families earlier in their journey. As program collaborations between the parent-to-parent support organizations and the state EHDI program evolve, NEVER GIVE UP. Continue to share dreams, educate one another, accept each other’s current circumstances, and be willing to work outside of the box. The personal investments by all can pay off at unpredictable times.”

See the document “A Case for Direct Referrals to Parent-to-Parent Support Programs” here: https://handsandvoices.org/fl3/resources/enews/articles/IL_article-3-2021.pdf

Read more about Illinois’ innovation: https://handsandvoices.org/fl3/resources/enews/articles/IL_article-3-2021.pdf  ~

H&V Communicator – Summer 2021