After more than 30 years of research on childhood hearing impairment, the American Speech-Language-Hearing Association helped secure federal funding to support widespread newborn hearing screening.
Healthcare • American Speech-Language-Hearing Association
Big changes sometimes require buckling in for the long term. In the case of the American Speech-Language-Hearing Association, it took more than three decades for its work studying childhood hearing impairment and promoting widespread infant screening to have an impact. But when it did, the difference it made was dramatic.
In 1969, ASHA launched the Joint Committee on Infant Hearing with two other medical societies to develop policies for newborn hearing screening. JCIH’s founders had recognized a pervasive problem with children having undiagnosed hearing impairment. Indeed, until 2005, nearly half of American children with hearing loss weren’t diagnosed until age three or later. That delay risked setting off a cascade of medical and learning issues for children.
By the 1990s, ASHA began to move beyond policy statements and pursued advocacy routes to turn JCIH’s findings into legislation. A separate stakeholder group spun off from JCIH and began strategizing.
There are a lot of us who have this awareness. Let’s work together. Let’s form a coalition. Let’s pursue this at both the state and federal levels.
“ASHA took the leap to say, ‘Hey, there are a lot of us who have this awareness. Let’s work together. Let’s form a coalition. Let’s pursue this at both the state and federal levels,’” says ASHA CEO Arlene Pietranton, FASAE, CAE.
Various attempts at legislation stalled for a decade until the passage in 2000 of the Children’s Health Act, which established federally funded programs for early hearing detection and intervention (EHDI) for children born in hospitals. The impact is stark: According to Centers for Disease Control and Prevention data, 97 percent of infants born in hospitals in 2014 have had their hearing screened.
“As a result of the testing that’s in place now, the average age at which a child who is born with congenital hearing loss is confirmed is a matter of a couple of months,” Pietranton says. More sophisticated testing methods have also helped with earlier detection.
ASHA continues to advocate for EHDI programs, which “have been to a certain degree baked into federal budgets and federal policy, but it does require continued advocacy to keep them there and to keep them funded,” she says. “So the work is ongoing around protecting, preserving, and expanding them.” (Federal legislation enacted in 2017 preserved EHDI program funding until 2022.)
And ASHA helps to keep JCIH going as it continues its policymaking work, supporting two volunteer members with seats on the committee. “ASHA is fortunate to have resources and infrastructure that allow us to support the JCIH by having our volunteer member representatives that serve, as well a staff member who helps to support the JCIH itself,” Pietranton says.
While EHDI has helped society make huge strides in screening, JCIH is paying close attention to how well follow-ups are being implemented after those diagnoses.
“We’re asking how we can identify which states are doing a really good job managing follow-up,” says Tricia Ashby-Scabis, director of audiology practices at ASHA. “We’re trying to get a better understanding of what’s happening state by state and how we can start to support and promote the best models” to ensure adequate follow-up care.