Tracking Enrollment in Family-to-Family Support

By Vicki Hunting, H&V Headquarters

As part of the current federal Early Hearing Detection and Intervention (EHDI) Program objectives, grantees are required to “increase by 20 percent (from year one baseline), the number of families enrolled in family-to-family support services by no later than 6 months of age”. Since March of 2020, a group of EHDI experts comprised of EHDI Program Coordinators, Parent Partners, the Hands & Voices Family Leadership in Language and Learning (FL3) Center staff, and National Center for Hearing Assessment and Management (NCHAM) National Technical Resource Center (NTRC) staff convened to develop tools for programs to help meet this new HRSA program objective. In addition, the FL3 Center and NTRC facilitated a Learning Community designed to test the original tools to help states/territories meet the HRSA objective requirement over their 4-year grant cycle.

This collective work began with a conversation that took place during the joint EHDI Coordinator / Family-based Organization (FBO) Meeting in Kansas City in 2020. From May 2020 through March 2021, the original group of four EHDI Coordinators and their Parent Partners (IL, GA, UT, OR) met twice per month to begin discussions on the impact of tracking the enrollment of families into family-to-family support. In March of 2021 the NTRC and FL3 kicked off a Learning Community with seven additional EHDI Coordinators and Parent Partners (IN, IA, ME, MA, NV, CNMI, PA) to validate the original work. The Learning Community working group met monthly through July 2021 to share and discuss this work and ended with a system-wide webinar to share the learning in this work on July 27, 2021 (http://www.infanthearing.org/webinars/2021/family-support-data.html).

The purpose of these working groups was twofold:

1. to outline definitions for the HRSA EHDI Program Objective related to enrollment into family-to-family support, and
2. to identify data fields that the EHDI programs need to measure enrollment into family support so that they can report progress to HRSA.

FBOs need specific data to be able to provide information to EHDI programs on the work they are doing to support families. FBOs require different kinds of data than EHDI Programs to provide support to families on their journey of raising deaf or hard of hearing children. They may need information about family situations, educational supports, amplification, additional disabilities or other providers serving the family.

Definitions were created for specific terms as a guideline and since EHDI Programs differ in their specific definitions of these terms, they may need to be adjusted on a program-by-program basis as determined by the individual programs. Adopting uniform definitions will allow EHDI programs to compare across states/territories and allow a look at national progress in these areas. Here are examples of a couple of definitions that were created:

• Referred is the receipt (sharing per program agreement protocol) of contact and pertinent information from an entity (e.g., EHDI or EI program, the family, or a provider) to the FBO for any child with suspected or confirmed permanent, atypical hearing in one or both ears. The information is received for the purpose of offering, providing, and/or enrolling in family-to-family support.
• Enrolled is the two-way verbal and/or written acceptance (as agreed upon between the EHDI program and the FBO) to participate in family-to-family support services followed with documentation by the FBO into the designated data system(s).
• Declined: During two-way communication, the family chooses not to participate (refuses) in offered services.

A data entry tool was also created to assist in pulling the data from EHDI systems, by child, to track specific items for this measure. FBOs understand that this data may change or vary depending on when data was pulled and by birth date range, and that parents/caregivers can re-engage at any time on their journey. Standard data collection across EHDI programs is vital to improving the EHDI system and meeting the needs of families we serve.

At the end of this work, a survey was conducted with participants from the original FEHDI (Famly EHDI) work group and the Learning Community participants. Here are some of the findings.

• EHDI Coordinators and Parent Partners report that prior to participation in the FEHDI work, 40% indicated positive responses (Excellent, Very Good) when asked about their staff capacity to collect family support data (understanding of definitions, personnel resources, etc.). After participation, 90% indicated a positive response to this question.
• 100% of participants in the original FEHDI work group or FEHDI Learning Community indicated that sharing with other EHDI Coordinators and parent leaders was helpful in building their confidence in collecting family support data.
• 100% of participants in the original FEHDI work group or FEHDI Learning Community indicated that their participation in this FEHDI work made them feel more prepared to report on this program objective to HRSA.

Participants shared their qualitative feedback as well. “Our participation in the FEHDI work encouraged us to have these conversations with our stakeholders, emphasizing the importance of collecting this data and the importance of family-to-family support,” said one program. Another FEHDI participant noted that “the data definitions created allowed us to give our EHDI-IS vendor concrete info for incorporation in the data system.”

Since the end of the Learning Community, additional conversations have taken place with the federal partners which has resulted in commitment to work towards including standard reporting for enrollment into family-to-family support for EHDI programs. For additional information on this work contact Vicki Hunting, vicki@handsandvoics.org.  ~

H&V Communicator – Winter 2022