20Q: A Quarter Century of EHDI—Milestones, Challenges, and the Road Ahead

From the Desk of Gus Mueller

This month we’ll be talking about newborn hearing screening, early hearing loss detection and treatment. For many of us, when the topic of newborn hearing screening comes up, it’s only natural to think of Marion Downs. There might be some competition for the title of “Father” of audiology, but the “Mother” of audiology? Marion Downs owns that one, hands down. 

Marion, who lived to be 100, not only was a visionary and a leader of our profession, but had a view on life envied by most, perhaps best summed up by the title of her book (written at age 93): “Shut Up and Live!” (available from Amazon). Her friend and colleague of 40 years, Jerry Northern, recalls that one of her favorite sayings was: “Live for today, plan for tomorrow, but let’s party tonight!”

When Marion was “only 90” she wrote a 20-page monograph titled “Sones from an Old Sound Room.” In it, she tells many fascinating stories related to her career, including her battles in establishing hearing screening for infants. She closes her segment on the birth of the Joint Committee On Infant Hearing, with a quote from Ghandi:

First they ignored me;

Then they laughed at me;

Then they fought me;

AND THEN WE WON!

To provide us with an update in this important area of audiology, Andrea Dunn, PhD is joining us here at 20Q this month. Dr. Dunn is Vice President of Programs, with the Oberkotter Foundation. She also serves as Vice Chair of the Oberkotter Foundation Scientific Council for Childhood Hearing. Dr. Dunn oversees the grant program, working collaboratively to advance projects and propel initiatives aligned with the Foundation's mission to help families ensure their children who are deaf or hard of hearing have opportunities to reach their full potential through listening and spoken language.

Dr. Dunn’s career has included previous faculty positions with the renowned pediatric audiology centers of Vanderbilt University’s Department of Hearing and Speech Sciences and the University of North Carolina at Chapel Hill’s Department of Speech and Hearing Sciences. Many of you know her from her book chapters, journal articles, and her popular lectures and workshops focusing on the developmental impacts of childhood hearing loss, pediatric audiology, and pediatric amplification. 

In her excellent 20Q, Andrea tells a great story about the progress that we have made in newborn hearing screening, early hearing loss detection and treatment—a journey that started over 60 years ago, when Marion Downs and a small group of volunteers were screening babies in Colorado. I’m writing this on June 9th, 2025, and as most of you know, our government recently has made decisions to eliminate or reduce funding for the Centers for Disease Control and Prevention’s (CDC) Early Hearing Detection and Intervention (EHDI) Program. Let’s hope that when the dust settles, common sense and clear-thinking will prevail, and this critical program will be protected. You can help: Get in touch with your congressional representatives to urge them to restore funding for the EHDI program. You can see a sample letter here.

Gus Mueller, PhD
Contributing Editor

Browse the complete collection of 20Q with Gus Mueller CEU articles at www.audiologyonline.com/20Q

Note: The information in this article was accurate at the time of writing. Proposed changes to the federal budget may impact the ongoing funding of newborn hearing screening and intervention services.

20Q: A Quarter Century of EHDI—Milestones, Challenges, and the Road Ahead

Learning Outcomes 

After reading this article, professionals will be able to:

• Explain the "1-3-6" guidelines established by the Joint Committee on Infant Hearing (JCIH), their role in early identification and intervention for infants with hearing differences, and the role of early advocates for universal newborn hearing screening (UNHS).
• Describe how social determinants of health impact the risk of loss to follow-up (LFU) in infants who do not pass their hearing screening.
• Summarize recent research findings on the role of social support personnel in improving outcomes within EHDI programs.

Andrea Dunn, AuD, PhD

1. Help me out with some history. How did newborn hearing screening come about, and who were some of the driving forces?

Many individuals played a role in making Universal Newborn Hearing Screening (UNHS) a reality, but for the sake of time, I’ll focus on a couple key figures who were especially influential – the first of those was Marion Downs.

Marion Downs was a true trailblazer in audiology. In the 1950s and 60s, she was among the first to advocate for the routine testing of hearing in infants and very young children using behavioral techniques. This involved observing infants’ responses - such as awakening, startling, face or body movements -in response to different sounds.

 At the time, most pediatricians, otolaryngologists and even audiologists believed hearing testing should wait until children were at least 2 years old, but Marion was convinced that early identification of hearing loss was critical. She understood that the first months after birth represented a vital window for brain development, and that timely identification and intervention could dramatically improve outcomes. Despite major skepticism and even criticism, Marion pioneered methods for testing infants’ hearing, recruiting volunteers to assist in her efforts.

Between 1965 and 1967, Marion, and 60 volunteers from the Denver Junior League, screened 17,000 babies across eight hospitals, representing the first large-scale newborn screening program (Downs & Hemmenway, 1969). In 1969, she organized the first meeting of the Joint Commission on Infant Hearing (JCIH), which would later play a critical role in establishing guidelines for newborn hearing screening programs that remain relevant today.

2. This was before ABR and OAEs. What tests were conducted, and were they considered reliable?

You're right—those objective tests came later. In her early work, Marion primarily relied on behavioral methods, observing infants' responses to sound, such as startling, eye widening, or changes in sucking. Her newborn hearing screening trial revealed drawbacks with these methods, however, including unacceptably poor predictive accuracy and reliability.

In fact, the JCIH’s first report from 1970 highlighted these issues with mass behavioral screening, and recommended further research be completed to identify more effective screening procedures.

3. All that effort with behavioral screening of 17,000 babies, and it didn’t really work out as expected. So, enter ABR and OAEs?

Yes, fortunately, in the ‘80s and ‘90s, audiologists began using auditory brainstem response (ABR) and otoacoustic emissions (OAEs) tests more often in clinical settings. The big advantage of these tests was that they didn’t rely on interpretation of a baby’s behavioral response and could be completed while they were sleeping. The timing couldn’t have been better because these advancements made newborn hearing screening both practical and accurate!

Even though these tools were more widely available clinically, UNHS was not yet mandated. Screening programs existed in some hospitals and clinics, but adoption was inconsistent. Many newborns were not screened due to the lack of standardized protocols, concerns raised about the premature implementation of newborn hearing screening (Bess and Paradise, 1994), and the lack of legislative support and funding. At that time, critical data was still lacking to fully justify universal screening.

4. What were the missing pieces that experts were looking for?

Several conditions need to be met before considering implementing any mass screening. First, the disease or disorder being screened must present a significant health issue; that is, it has to occur frequently enough to warrant screening. In addition, the test itself must be sensitive (able to accurately detect a high proportion of positive cases) and specific (meaning it minimizes false positives). It should be safe, cost-effective, widely available, and have clear follow-up procedures so anyone who tests positive can receive timely intervention. Also, there must be strong evidence that early intervention leads to improved long-term outcomes.

This latter issue is where the work of Dr. Christine Yoshinaga-Itano became crucial. Her research filled the gap by providing concrete evidence that early intervention significantly improves language outcomes for children with hearing loss.

During the mid-1990s, Dr. Yoshinaga-Itano evaluated the effect of home-based early intervention (EI) from a qualified EI provider on language outcomes. While that study was underway, two hospitals in Colorado began implementing universal newborn hearing screening. Dr. Yoshinaga-Itano and her team retroactively collected and analyzed data on the age of hearing loss identification of children in her study to determine whether earlier identification impacted language outcomes.

In her 1998 publication, Language of Early- and Later-Identified Children with Hearing Loss, Dr. Yoshinaga-Itano provided compelling evidence that children identified early and fitted with hearing aids by 6 months of age had significantly better later receptive and expressive language outcomes compared to those identified between 7 and 34 months of age (Yoshinaga-Itano, 1998). This research provided compelling evidence to justify newborn hearing screening by showing that early hearing detection and intervention improved long-term speech and language outcomes.

5. Did this research help garner support for newborn screening?

Most certainly. Before that work came out, some key organizations like the American Academy of Pediatrics (AAP) had not yet endorsed NHS. Just one year after that study was published, the AAP officially endorsed UNHS (American Academy of Pediatrics [AAP], 1999), and Congress passed the Newborn Infant Hearing Screening and Intervention Act of 1999 (Public Law No. 106-113, 1999), which offered grants to encourage states to implement newborn hearing screening programs. However, it wasn’t until 2000 that further legislation was passed (Children’s Health Act, 2000) that allocated dedicated funding and technical support from the Centers for Disease Control and Prevention (CDC) and the Health Resources Services Administration (HRSA) to support universal newborn hearing screening and data reporting.

That same year, the JCIH published a position statement establishing the “1-3-6 guidelines”, which remain relevant today (Joint Commission on Infant Hearing, 2000). These call for:

• Hearing Screening by 1 month
• Diagnostic hearing testing by 3 months
• Enrollment in early intervention by 6 months

Notably, in 2019, the JCIH released a position statement recommending earlier benchmarks for diagnostic testing (by 2 months) and intervention (by 3 months), shifting to a "1-2-3" model (Joint Committee on Infant Hearing [JCIH], 2019). While all states should strive for this, it is most relevant for those that are already successfully meeting the original “1-3-6” benchmarks.

6. It appears that the JCIH guidelines have really stood the test of time. Let’s go back to 2000 again. Once the mandate went through, how did states respond? What impact did it have on screening rates and early diagnosis?

Dr. Karl White has authored an excellent article that summarizes the impact of universal newborn hearing screening legislation on EHDI (White, Forsman, Eichwald & Munoz, 2010). I'll highlight a few points from that article, and mention some other published data, but I encourage anyone interested to read the full article.

Following the implementation of the NHS mandate, state programs were rapidly established, leading to a substantial rise in newborn screening rates and a decline in the average age of hearing loss identification. By 2010, all 50 states and the District of Columbia had Early Hearing Detection and Intervention (EHDI) laws or voluntary compliance programs in place to support newborn hearing screening efforts. The percentage of newborns screened in the U.S. rose steeply from 46.5% in 1999, based on reports from 22 states and territories (Curry & Gaffney, 2010), to nearly 97.9% in 2010, according to CDC data from 55 states and territories, including the District of Columbia (CDC, 2012). With widespread screening, the average age of diagnosis decreased to approximately two months by 2013, based on data from 45 U.S. states (Munoz, Blaiser, & Barwick, 2013; White, 2022).

The picture, however, was not all rosy. Despite high screening rates, national CDC data revealed significant gaps in follow-up care, with a substantial proportion of infants who did not pass the screening either not receiving a follow-up diagnostic evaluation or lacking documented follow-up. This issue, known as “loss to follow-up” (LFU) or “loss to documentation” (LTD), remained a major challenge. For instance, while an average of 93.4% of infants were screened by 1 month in 2009 and 2010, 42.1% of those who did not pass the screening were classified as LFU/LTD (Gaffney et al., 2014). Furthermore, only 70.2% of infants who referred on the screening completed diagnostic testing before 3 months, and just 65.2% of those identified with hearing loss were enrolled in Early Intervention services before 6 months (Gaffney et al., 2014).

In its first decade, universal newborn hearing screening essentially became a reality, but ensuring timely diagnostic follow-up and EI enrollment remained an obstacle.

7. The loss-to-follow-up numbers are discouraging, but those data are over a decade old. How does that compare to today?

The most recent data available on the CDC website, based on the 2022 Hearing Screening and Follow-up Survey (HSFS), reports national screening information from infants born between January 1, 2022, and December 31, 2022. It indicates that 98% of the over 3.6 million babies born in the U.S. in 2022 were screened, but 34% of those babies in need of a diagnostic evaluation were LFU or LTD (Centers for Disease Control and Prevention [CDC], 2024). Additionally, only 60% of those babies identified with hearing loss were documented as being enrolled in EI (Part C or Non-Part C) and the percentage of those enrolled before 6 months dropped to just 41% (CDC, 2024).

This ongoing issue was recently highlighted in a published joint letter from U.S. Department of Health and Human Services (HHS) and the U.S. Department of Education (2024, August 5). The authors of the letter commented on the challenges with respect to timely diagnostic follow-up and enrollment in EI for babies who are deaf or hard of hearing (D/HH) and called for better collaboration between EHDI programs and Part C early intervention services. They cited 2021 data indicating that 43% of babies who did not pass their hearing screening received a diagnostic evaluation by three months of age and that only 42% of babies identified with hearing loss were receiving Individuals with Disabilities Education Act (IDEA) Part C early intervention services by six months of age. To address these challenges, they encouraged data sharing and tracking to promote timely diagnosis and intervention and noted that resources are available to support interagency collaboration at the state and local levels.

So, although we’ve made considerable progress with respect to UNHS, there is still much to be done! And recent changes to the EHDI system may indicate a heightened focus on timely diagnosis, intervention, and monitoring of longer-term outcomes.

8. It does appear that there’s more work to do. Let’s talk more about these recent changes to the EHDI system in the US. What is different, and who is heading up the program now?

Certainly! Since 1995, the National Center for Hearing Assessment and Management (NCHAM) at Utah State University has been instrumental in supporting the U.S. EHDI system. Through a grant awarded to Dr. Karl White, the NCHAM has spent the last 30 years providing technical assistance to state NHS programs, organizing the annual EHDI conference, compiling NHS benchmark data, and performing a variety of additional services and tasks related to the implementation and evaluation of EHDI services in the U.S.

In 2023, HRSA announced a change in how state-level EHDI programs and services are supported, shifting from the NCHAM to the EHDI National Network. Three organizations were chosen to help state EHDI programs under this 5-year cooperative agreement. These include the Implementation and Change Center (ICC) at Gallaudet University, the Family Leadership in Language and Learning Center (FL3) within Hands and Voices, and the Provider Education Center (PEC) within the American Academy of Pediatrics (AAP).

9. What will each of these organizations do?

Great question! These organizations have specific aims and are charged with working together to support states, families, and providers. The ICC will be evaluating and addressing the needs of EHDI stakeholders in states and territories, offering tailored technical assistance, and implementing a database for improved tracking of language acquisition outcomes of young children with hearing loss. The FL3 will be focused on increasing family-to-family support, engagement with adults who are deaf or hard of hearing (D/HH) and developing family leadership skills. Finally, the PEC will focus on providing education and developing resources for professionals like physicians, healthcare providers, and allied health providers so they can more effectively support their local EHDI networks.

10. These new groups are on board to help state EHDI programs, but how effective can they truly be without a solid understanding of what’s contributing to LFU/ LTD and low EI enrollment? Do we know any of the reasons or risk factors for LFU and LTD?

There are a number of important factors that have been identified as risk factors for LFU and LTD, including social determinants of health (SDOH) and sociodemographic factors. Although these are related, and can both influence health outcomes, the former is primarily associated with external conditions and the latter with personal characteristics. Social determinants of health include broader environmental conditions that shape health equity like socioeconomic status, family education, and geographical location, which can affect a family's ability to access healthcare including hearing screening, diagnosis, and early intervention services. Sociodemographic factors, on the other hand, encompass personal characteristics such as race, ethnicity, gender, language proficiency, and maternal education level.

In 2023, Findlen and colleagues published a systematic review that summarized findings from 62 studies on hearing loss screening, diagnosis and early intervention for children. They distinguished between family and individual factors and systemic factors, highlighting how each can impede timely intervention. Examples of system factor obstacles identified from the literature included provider shortages, systemic racism, provider and family knowledge gaps, and documentation issues. Individual barriers included things like financial instability, race, maternal education, rural place of residence, healthcare access, and medical factors (Findlen et al., 2023).

11. What are some of the individual factors that have been shown to impact newborn screening and diagnosis?

Let me begin by highlighting findings from a couple of studies that found a relationship between hearing screening, hearing loss detection, and individual factors such as race, maternal education, and birth weight. It's important to acknowledge, however, that results can vary somewhat across studies, populations, and settings.

In 2014, Crouch and colleagues published data from 1,609 infants in South Carolina who did not pass their newborn screening in 2013, identifying racial disparities in follow-up among other factors. They found that 55% of white infants were screened by one month, compared to only 45% of non-white infants. Similarly, Meyer et al. (2020) examined data from 729 infants born in Minnesota and found that race and ethnicity, along with other factors, were associated with delays in diagnosis. Infants from the Hmong community had the highest likelihood of delays, followed by Black infants, when compared to their white counterparts.

In addition to race, maternal education also has been identified as a significant factor. Crouch et al. (2014) reported that infants born to mothers without a high school diploma were less likely to complete a diagnostic evaluation by one month, two to three months, or even at all (37.8%) compared to those whose mothers had a high school diploma or higher (25.5%). Similarly, Meyer et al. (2020) found that infants born to mothers with only a high school diploma (40%) were more than twice as likely to experience delays compared to those whose mothers had a college degree (16%). Maternal education could serve as a proxy for other factors, such as health literacy, financial stability, and comfort navigating the healthcare system, which may influence whether families complete follow-up evaluations and access services in a timely manner.

Birth weight also has been linked to follow-up delays. Meyer and team (2020) reported that very low birth weight (VLBW) infants had the highest risk for diagnostic delays, with 82% being identified with hearing loss after three months—having over twice the likelihood of delay compared to infants with normal birth weight. Similarly, Crouch (2014) observed that lower birth weight (< 2500g) was associated with a 20% decrease in timely diagnosis by two to three months. Other health factors, such as lower APGAR scores and neonatal medical complications, also have been linked to increased risk of missing initial newborn hearing screening (Christensen et al., 2008).

Given these risks, implementing targeted strategies may help minimize delays and reduce loss to follow-up. For example, Zemba and colleagues (2025) reported lower LFU rates in infants with NICU history from hospitals offering inpatient diagnostics before discharge relative to those without (2025). This underscores the importance of communication and coordination between newborn screening programs, audiologists, and NICU teams, and exploring opportunities to for inpatient diagnostics for infants who do not pass their newborn screening.

Further highlighting the impact of delays, Tran et al. (2016) analyzed Louisiana EHDI data from 2011-2013 and found that incomplete audiologic diagnoses (IAD) were linked to delayed newborn hearing screenings (> 30 days of age) and follow-up appointments. Their study showed that for both low birth weight and normal weight infants, the risk of “IAD” increased when screenings were delayed (> 30 days), follow-ups were delayed (>30 days after NHS), and when multiple follow-ups were required.

These findings emphasize the importance of early screening, prompt follow-up, and minimizing appointment burden to ensure timely hearing loss identification and intervention.

Beyond these individual medical and demographic factors, broader social determinants of health (SDOH) and sociodemographic variables, like healthcare access and geographic location, can also contribute to disparities in EHDI outcomes. Implementing targeted solutions and support may help address some of these barriers.

12. I assume that access to healthcare services and supports can vary widely depending on where a family lives?

Most certainly. For example, living in a rural area can contribute to delays or loss to follow-up (LFU) due to limited access to pediatric audiology services for newborn hearing rescreening, diagnostic evaluations, and rehabilitation appointments. Families often must travel long distances to access services, making attending follow-up appointments difficult. Logistical barriers such as taking time off work, arranging transportation, and finding childcare for siblings, can further contribute to delays in diagnosis and intervention and add financial strain.

In a 2014 study, Bush and colleagues analyzed data from 6,970 babies in Kentucky who did not pass their newborn hearing screening between 2009 and 2011. They reported a 6.5% higher LFU rate in babies from rural Appalachian regions compared to those from non-Appalachian regions, and a significant group difference in the age at time of hearing loss identification. Infants from rural areas, living an average distance of 82 miles from a pediatric audiology testing facility, were diagnosed on average at 53 weeks of age, compared to 31 weeks for babies from urban areas, located an average distance of 23 miles away. But authors did caution that other factors, such as lower income and education levels in families from Appalachian regions, may also have contributed.

13. So, we’ve talked about how rescreening and diagnostics are affected by both individual and system factors. Is there anything else that social determinants of health might influence?

I’m glad you asked that because, as we discussed earlier, screening programs are only effective if there’s a pathway for timely intervention. However, research has shown that disparities extend beyond screening and diagnosis and into device access.

For example, Bush and his team analyzed data from 53 pediatric cochlear implant recipients from Kentucky who were implanted between 1993 and 2011. They compared the timing of diagnosis, hearing aid fitting, and cochlear implantation in children from rural Appalachian counties (n=36) and urban/suburban (n=17) counties, while accounting for the impact of mandatory newborn hearing screening after 2000. They found that children from rural counties were diagnosed much later—at an average age of 80 weeks, compared to just 13 weeks for children in urban/suburban areas. While the difference in age of hearing aid fitting was not statistically significant, the difference in age at cochlear implantation was striking. Children from rural areas were implanted, on average, at 360 weeks, which is more than twice the age of those from urban/suburban areas, who received implants at 146 weeks.

Similarly, Liu and colleagues (2020) retrospectively examined the records of 1,511 children 18 years of age and younger who underwent cochlear implantation in Florida between 2005 and 2017. Their study revealed significant geographic disparities. Of those children who were implanted by age one, 65 were from metropolitan areas, and none were from rural areas. They also found racial disparities, noting that Black and Hispanic children were less likely to receive implants by their first or second birthday compared to their white peers, even when controlling for private insurance status.

In a more recent study, Jaradeh and colleagues (2024) analyzed data from 132 children with hearing loss seen at a tertiary medical center between 2018 and 2021. This cohort included a significant percentage of Hispanic children (51%), children with medical comorbidities (48%), and children with public insurance (76%). They found that Hispanic children were less likely to be identified with hearing loss by 3 months and to receive intervention by 6 months compared to non-Hispanic children.

These findings demonstrate that disparities go beyond hearing screening and diagnostic services to device access. However, device access and consistent use are not the only factors driving auditory development. Parental involvement and the quality of the linguistic environment are also critically important. These elements are also shaped by social determinants of health and have been shown to significantly affect the language outcomes of children with hearing loss (e.g., Holzinger et al., 2020).

14. Are there any programs or models that have successfully addressed these gaps in care at the diagnostic stage?

Yes, there is growing evidence that social support interventions, such as parent navigator programs and community health worker (CHW) models, can significantly improve newborn hearing screening follow-up.

Bush and colleagues (2017) examined the impact of parent navigators in a randomized controlled trial involving 61 parent-child pairs. Families were assigned either to a patient navigator group or a standard of care group. Groups demographics did not differ across race, age, socioeconomic status, or other demographic factors known to potentially predispose risk for LFU. The results were striking — only 7% of families in the patient navigator group were LFU by six months, compared to 38% in the standard of care group. Additionally, the average age at the first follow-up appointment was significantly lower in the patient navigator group (68 days versus 106 days), keeping them within the Joint Committee on Infant Hearing (JCIH) recommended benchmarks.

The study also looked at rural (28%) versus non-rural residence and found that none of the rural-based families in the patient navigator group missed their follow-up appointments, while 44% of rural-based families in the standard care group were LFU.

The success of patient navigators is further reinforced by findings from Leong and colleagues (2024), who examined the role of community health workers (CHWs) in improving outpatient hearing rescreening adherence. The study, conducted at New York Presbyterian/Columbia University Irving Medical Center, involved 535 infants—297 of whom received CHW support and 238 did not. The CHWs were onboarded by healthcare professionals and educated on audiology and early intervention topics. They offered bilingual (English/Spanish) and culturally sensitive support, helping families with scheduling and attending appointments. The CHW-supported group had a significantly higher rescreening rate (79.5%) compared to the comparison group (71.4%), which reinforces the benefit of personalized, community-based assistance in improving follow-up care.

15. Can you tell me more about how these programs function in practice? Who serves as a navigator, how are they trained, and what specific role do they fulfill?

Patient navigators have been successfully implemented in other areas of healthcare to improve appointment adherence and medical follow-through. They are trained to help individuals and families overcome challenges that could prevent them from accessing the healthcare services they need. They provide guidance and education on medical conditions, the healthcare system, and help families stay on track with appointments and treatments.

In the 2017 Bush study mentioned earlier, patient navigators (PNs) were assigned to families shortly after study enrollment and within two weeks of the baby’s birth. Families in the PN group received a follow-up call within five days, while the standard care comparison group had no further contact after being referred for follow-up because their baby did not pass the hearing screening. The PNs were trained using the American Cancer Society patient navigator model, and covered topics like rural healthcare obstacles, EHDI system protocols, audiological testing, medical care coordination, and patient support strategies. Navigators used semi-structured interviews and open-ended questions to educate parents on newborn hearing screening guidelines, address concerns, and assist with scheduling appointments and arranging transportation. They maintained weekly contact with families to keep them engaged, which resulted in earlier average age at time of diagnosis and a higher number of completed appointments.

16. That’s very interesting and promising. Have any other strategies been shown to improve follow-up rates?

Yes, research studies have identified additional strategies for reducing LFU and LTD. For example, Thomson and Yoshinaga-Itano (2018) found that newborn hearing screening programs in Colorado, where an audiologist was involved, had lower rates of LFU and LTD. The involvement of an audiologist mitigated the impact of other influencing factors, such as rescreening scheduling responsibility. They found that when the responsibility for scheduling rescreening was placed on parents, infants were 62% less likely to receive rescreening. However, when an audiologist was involved, this responsibility was shifted away from parents, resulting in higher follow-up rates. (Thomson & Yoshinaga-Itano, 2018). Cunningham and colleagues (2018) also evaluated factors influencing rescreening rates in a retrospective study of infants born in Colorado from 2007 – 2012 and found that charging a rescreening fee was associated with higher follow-up. The authors suggest that other practices, alongside the rescreening fee, may also have contributed to improved follow-up. However, it is also possible that charging a rescreening fee underscored the importance of rescreening, thereby increasing parental compliance.

Beyond these, integrating hearing screening into existing public health support services has also shown promise in improving follow-up rates. One approach to this involves leveraging programs that families are already engaged with, such as the Women, Infants, and Children (WIC) program. Hunter et al. (2016) conducted a study in Ohio to evaluate the potential benefits of providing hearing rescreening services at infants’ WIC appointments. Among WIC-eligible infants, the LFU rate was 19% lower over a 2-year period compared to non-intervention infants. The WIC intervention group also had earlier confirmation of hearing status, being identified with hearing loss an average of 28 days sooner (34.8 days compared to 63.6 days) than non-intervention infants.

Other studies, including Deng et al. (2022) and Zeitlin et al. (2021), also found that WIC participation was associated with a higher likelihood of completing diagnostic follow-up, reinforcing the potential of leveraging existing public health programs to improve NHS outcomes. Zeitlin et al. (2022) further indicated that WIC enrollment was a protective factor against newborn hearing screening LFU, even though counselors do not explicitly ask about it. Despite these promising findings, reports have not been entirely consistent; Seelinger (2016) found no effect of WIC participation on LFU in a Wisconsin-based cohort. This variability underscores the need for further research to better understand the mechanisms through which WIC support can improve follow-up care and the conditions in which it is most effective.

Beyond WIC, parents and professionals have identified several practical approaches to potentially improve follow-up after newborn hearing screening. Russ et al. (2010) reported strategies such as confirming the primary care provider before hospital discharge, obtaining a second contact number for families, using scripted messages to communicate the screening results, and implementing a "roadmap” to help parents understand how to navigate the diagnostic process. Collectively, these findings reinforce the importance of clear, consistent communication, and support in guiding families through next steps in the process.

17. How can we increase awareness and improve communication between parents and professionals about the importance of early hearing detection and intervention?

Improving our EHDI system requires the collective effort of all the professionals who support families like pediatricians, obstetricians, nurses, midwives, screening technicians, early intervention providers, and more. It’s crucial that everyone communicates a clear and consistent message to parents about the importance of hearing screening, along with timely follow-up and intervention.

Unfortunately, research has revealed knowledge gaps among healthcare providers, which can contribute to delays. Moeller et al. (2006) found that while 81.6% of primary care physicians surveyed supported universal newborn hearing screening, many did not feel confident in communicating with families about follow-up procedures and interventions. Similarly, Goedert et al. (2011) surveyed 518 nurse midwives across all 50 states and 2 U.S. territories and found that many lacked knowledge about the newborn hearing screening process, including diagnostic resources and follow-up recommendations for babies requiring rescreening. In fact, only 68% of midwives reported that screening all newborns for hearing loss was important. These findings underscore the need for enhanced provider education to help ensure families receive accurate information about the importance of newborn hearing screening and follow-up.

Studies of parent-reported experiences have further revealed how communication gaps, delays, and misinformation can influence follow-up. Elpers et al. (2016) interviewed 40 parents from rural Kentucky whose child referred on a newborn hearing screening between 2012 and 2014. Some families received screening results late, days or even weeks after discharge by mail, and reported the results were unclear and confusing. Others reported that their primary care physicians downplayed the need for further testing, offering reassurance that hearing loss was unlikely, and that no immediate action was necessary (Elpers, Lester, Shinn, & Bush, 2016).

Larsen and colleagues (2012) also explored family-reported barriers to NHS diagnostic follow-up by 3 months, surveying 416 families from 43 states who were recruited through two family-based organizations serving children with hearing loss. Among parents whose babies were born between 2006 and 2009, 20% were unaware of their child’s screening result and unsure of where to go for follow-up testing. Two-thirds of those parents had to arrange follow-up testing on their own, rather than having an appointment scheduled before hospital discharge, and one-third reported delays securing a follow-up appointment, which contributed to delays in hearing loss identification and intervention.

A more recent study by Reynolds and colleagues similarly identified barriers to timely diagnosis and intervention based on the JCIH 2019 1-2-3 benchmarks (Reynolds, Werfel, Vachio, & Lund, 2023). In their qualitative study of 13 caregivers of children enrolled in the Early Language and Literacy in Children with Hearing Loss (ELLA) longitudinal study, parents reported issues such as poor communication, inconsistent follow-up advice, and limited access to hearing healthcare services. One theme that emerged was lack of pediatrician knowledge about hearing loss and tendency to downplay the urgency of follow-up. Parents recalled being reassured, “Failing the screening doesn’t mean your child has hearing loss” or “It’s probably just fluid.” This lack of clarity on the next steps or importance of them reportedly contributed to delays in identification and intervention.

The Reynolds study (2019) reinforces that healthcare providers must have a strong understanding of hearing loss and follow-up protocols to ensure timely diagnosis and intervention. Effective communication between audiologists, healthcare providers, and parents is essential to overcome these barriers and ensure that children who do not pass their newborn hearing screening receive timely follow-up.

18. What are the best strategies for communicating with parents after a child does not pass the newborn hearing screening? How can audiologists and other medical professionals ensure parents understand that they must act quickly to follow-up when a child does not pass?

The way screening results are communicated can impact the time frame and likelihood that families follow through with hearing rescreening, diagnostic testing, and intervention. The American Speech-Language-Hearing Association (ASHA) published a document with guidelines for counseling parents that includes suggested best practices for delivering screening results (ASHA, 2008).

One of the key recommendations is that screening results should always be provided in both verbal and written forms, using sensitive language. Parents should be informed before hospital discharge about the screening process, potential outcomes, and the importance of timely follow-up. They advocate providing accurate information that emphasizes urgency without causing unnecessary alarm.

A couple of other takeaways on strategies to use when communicating results to families include:

• Using clear, concise language and avoiding jargon.
• Encouraging parents to ask questions.
• Providing written materials at a 4th to 5th-grade reading level and in the family’s preferred language.
• Provide clear next steps, including the names and contact information of follow-up testing facilities and audiologists.

Despite the potential for hearing screening to induce stress, parents generally respond positively to the procedure. Weichbold and colleagues (2000) surveyed 90 new mothers before hospital discharge and found that 84% supported newborn hearing screening, despite the possibility of false-positive results. The study further found that mothers who were supportive were more likely to have been informed about the hearing screening, been present during it, and aware of the screening results. These findings are consistent with a systematic review by Ravi et al. (2016), which analyzed data from 10 studies worldwide, including one from the U.S. The review showed that while caregivers generally have positive attitudes toward screening, they also exhibit gaps in their knowledge. Similarly, a large-scale survey of 1,539 U.S. households in 2012 found that 40% of parents were unaware of universal newborn hearing screening (Pynnonen et al., 2016). Together, these studies underscore the importance of providing clear and consistent communication to families to promote timely follow-up.

19. Where can parents and healthcare professionals find high-quality materials on newborn hearing screening and the importance of follow-up?

I'm glad you asked that! First, I want to highlight an excellent 20Q article by Erin Picou, which summarizes research from a team at Vanderbilt that evaluated newborn hearing screening brochures across 13 key dimensions (Picou et al., 2023). Their findings uncovered several flaws that contribute to parental confusion, reinforcing the need for clearer, more accessible information. I highly recommend checking out this piece, as well as their publication in the International Journal of Audiology.

I also want to point out the work of Hearing First (www.hearingfirst.org), a nonprofit organization committed to providing accessible information and support for families throughout the entire hearing journey. The Starts Here campaign (www.startshear.org) is specifically designed to empower families with essential knowledge about newborn hearing screening, helping expectant parents understand the importance of early detection and early hearing experiences on the development of the brain and spoken language development. They have a wealth of resources, guiding families from screening through identification and intervention.

Hearing First and the Starts Hear Campaign offer materials for both professionals and parents, including educational videos, free courses, and an online community where families and providers can connect, share experiences, and learn from one another. These resources help ensure that children identified with hearing loss, and their families, receive the best possible support and outcomes. I encourage everyone to visit their website, explore the resources, and sign up for courses to stay informed and help promote the best outcomes for children with hearing loss.

20. Before we wrap up, is there anything else you’d like to share about newborn screening and EHDI? Any final thoughts or key takeaways for professionals and families?

First, it’s been great to have this conversation. It’s truly a privilege to share this information in the hope that it motivates many of us to continue exploring ways to better support families throughout their hearing journey.

While we’ve made incredible progress over the last 25 years, there is still work to be done to ensure that every child receives timely and effective newborn hearing screening and follow-up. Too many families still face barriers—whether due to access, awareness, or resources—and it’s up to all of us to help bridge these gaps.

I also want to encourage all professionals to work together to help educate families about the importance of newborn hearing screening and the critical need for follow-up. By working together, we stand to reduce loss to follow-up and delayed diagnosis and ensure that every child with hearing loss gets the care and support they need. Let’s keep working toward a future where every child can reach their full potential and live a life without limits.

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