Collaborating for Universal Newborn Hearing Screening

Late detection of hearing loss in infants can lead to developmental delays that affect children’s future successes. When a bill that would mandate infant hearing screening stalled, ASHA stepped up to push the bill forward.

The Challenge

Infants begin absorbing sound before they are even born, responding to music or the sound of their mother’s voice in utero. But two to three out of every 1,000 children in the United States are born with a detectable level of hearing loss in one or both ears. Prior to 2000, fewer than 10 percent of newborns in the United States were screened for hearing loss, resulting in almost half of all children with a hearing loss left undiagnosed until their third birthday or later—a serious setback during a crucial period for language acquisition.

Late identification and intervention for children with hearing impairments can lead to delays in speech and language, cognition, literacy, and social-emotional development, as well as a reduction in academic success. These risks may lead to lower employment levels or earning potential in adulthood. Recognizing the importance of early diagnosis and the development of new technology to support infant hearing screenings, the American Speech-Language-Hearing Association drafted an initial version of the Early Hearing Detection and Intervention (EHDI) bill in the mid-1990s, which aimed to mandate standardized testing procedures for infants to identify hearing loss earlier and mitigate these risks. Although the research and evidence existed to support the bill, it had been stalled for three years because of a lack of consensus among stakeholders.

The Approach

In order to better understand the barriers to support, ASHA convened a meeting with stakeholders representing audiology, otolaryngology, pediatrics and nursing to discuss the issues. The Joint Committee on Infant Hearing (JCIH) represents multiple associations, including ASHA, American Academy of Otolaryngology – Head and Neck Surgery, American Academy of Pediatrics, the American Academy of Audiology, Alexander Graham Bell Association, as well as other stakeholders from the Council on Education of the Deaf, Centers for Disease Control and Prevention and government agencies. Through this partnership and in-depth discussions, it became clear that there was fundamental agreement on the content of the draft, but nuances in the language had held the group back from endorsing the bill.

Research played a critical role in changing the narrative regarding the draft bill and helped move the key stakeholders toward consensus. ASHA conducted secondary research to assess the latest study findings available on the plasticity of infant brains, how hearing loss impacted communications disorders and best practices in amplification, cochlear implants or other interventions that supported language development. This secondary research was integrated into fact sheets that were used to support conversations with policy makers who were potential advocates for the bill.

Additionally, JCIH conducted a thorough review of the latest research and clinical studies to ensure that recommended approaches for implementing screening and intervention included evidence-based practices that would best serve children, their families and society. The JCIH “Year 2000 Position Statement: Principles and Guidelines for Early Hearing and Intervention Programs” is widely recognized for providing the framework that was used to establish state and national systems for universal newborn hearing screening, evaluation and intervention, including guidelines for hospital and state level programs.

After reaching agreement on the language from all the key stakeholders, ASHA mounted an aggressive advocacy campaign that leveraged research findings to demonstrate the evidence and potential impact of the bill. As a result of ASHA’s efforts, the Early Hearing Detection and Intervention (EHDI) Act (PL 115-71) passed in 1999 with funding allocated to support the implementation of universal newborn hearing screenings prior to discharge from all hospitals.

Outcomes

Securing funding to support implementation was an essential part of ASHA’s advocacy efforts. Although the initial funding request was for $10 million, Congress authorized half that amount in the first year with increases in future re-authorizations. Funding was allocated to three U.S. Department of Health and Human Services agencies — the Health Resources and Services Administration, the Centers for Disease Control and Prevention, and the National Institutes of Health—to coordinate and advance a national program for the early identification and diagnosis of hearing loss and intervention services for deaf and hard-of-hearing newborns and infants.

EHDI requirements have been extremely effective in increasing the number of newborns with hearing loss identified at birth. According to 2017 CDC data, over 98 percent of newborns are now screened for hearing loss at birth, significantly reducing the average age of hearing loss detection for children and infants. However, many children still do not receive adequate support for hearing impairment, either because of a lack of follow up or the interventions provided are inappropriate. In order to support ongoing evaluation, the 2017 reauthorization of the EHDI Act included a provision for the CDC to take responsibility for collecting and reporting on data from state-level programs in order to evaluate progress, improve efficiency and guide future research and policy. 

Impact

Hearing loss diagnosis and appropriate intervention services within the first six months of life leads to significantly better language outcomes for children. The passage of the federal mandate for universal newborn hearing screenings has decreased the median age at which children are diagnosed with hearing loss, which significantly improves their chances of developing at the same rate as their hearing peers.

In addition to developmental benefits for children, early hearing loss detection and intervention yield significant economic benefits through education cost savings and increased lifetime productivity. A 1993 paper by Johnson et al. suggests that without early detection, “additional special education services beyond what would have otherwise been required can cost an additional $500,000 for the local school district.” The ways in which this initiative benefits individuals, families and society will continue to be documented in the future, as children identified and treated through EHDI programs grow and flourish throughout their lives.

References

Centers for Disease Control and Prevention (CDC). Identifying infants with hearing loss-United States, 1999-2007. MMWR Morb Mortal Wkly Rep. 59(8): 220-223.

Gallaudet University Center for Assessment and Demographic Study. Thirty years of the annual survey of deaf and hard of hearing children and youth: a glance over the decades. Am Ann Deaf. 1998;142:72–76.

Johnson JL, Mauk GW, Takekawa KM, Simon PR, Sia CCJ, Blackwell PM. Implementing a statewide system of services for infants and toddlers with hearing disabilities. Seminars in Hearing. 1993; 14:105-119.

National Institute on Deafness and Other Communication Disorders, Downloaded on January 10, 2018 from https://www.nidcd.nih.gov/news/2017/new-law-early-hearing-screening-infants-and-children
Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL. Language of early- and later-identified children with hearing loss.”.Pediatrics. 1998 Nov; 102(5):1161-71.