2019 FL3 Family Org Survey

By Vicki Hunting, H&V Headquarters

During June and July 2019, the Family Leadership in Language and Learning Program (FL3) conducted a survey to obtain feedback from Early Hearing Detection and Intervention (EHDI) contracted Family-based Organizations (FBOs). As we head into Year 3 of the Cooperative Agreement with Newborn Hearing Screening (NBS), the FL3 Program asked them to provide information about their FBO; programs provided, numbers of families served, etc. This information is being used to identify areas of concentration for Year 3 of this work to engage and support families who have children who are deaf or hard of hearing as well as assisting us in our report to the Health Resources Services Administration (HRSA) Maternal Child Health Bureau (MCHB). Individual FBO responses confidential and will not be shared. Only summarized results will be public.

Respondents were asked to reply based on fiscal year 2 (April 1, 2018-March 31, 2019). The survey link was emailed to 141 contacts from all FBOs on three separate occasions. There were fifty respondents from 42 states/territories (71% response rate). Five territories participated and eight states had more than one response (FBO). Of the 50 respondents, twenty-four are associated with Hands & Voices and twenty-six are not.

Ninety percent of the respondents indicated that their FBO has a website or webpage and 78% of those indicated that their FBO website or webpage has information specifically for families who have D/HH children. Twelve percent indicated that they do not have this information for families. In comparison, twelve to fifteen percent of family respondents to our National Needs Assessment survey in 2018 indicated that that they don’t know about or are not involved with their state’s FBO and only 24% indicated that they had visited an FBO’s website. While there is still work to do in this area, progress is being made.

While 86% of respondents indicated that their FBO offers a Family-to-Family support program, only 36% indicated that they offer a D/HH Mentor/Role Model/Guide for families. The National Needs Assessment family respondents indicated that only 27% were offered access to a D/HH role model.

Another area for contrast to the 2018 National Needs Assessment was in the area of receipt of direct referrals (individual family contacts) from their state/territory EHDI Program. The 2018 needs assessment reported that only 44% of FBOs received direct referrals compared to this survey where FBOs report that 70% received direct referrals (individual family contacts). This is important because if FBOs are not receiving contact information for families with children suspected of permanent hearing loss or newly diagnosed children, it makes it difficult to offer their services directly to families.

While nationwide data specific to the number of families enrolled in or were provided direct family support are not available or tracked, our FBO survey indicated that 4,581 Families with D/HH children were provided direct support. Six FBOs did not provide direct support or were unaware of how many families were served. In addition, our survey reported that 1,223 Families were provided access to a D/HH Adult Role Model/Guide/Mentor. Twenty-eight FBOs did not provide access to D/HH adults or were unaware of how many families were served.

More information about the National Needs Assessment can be found here: https://handsandvoices.org/fl3/resources/data.html  ~