The critical need for early deaf adult support in early intervention

How Audiologists Can Support EHDI Goals

Newborn Hearing Intervention

Maggie’s Story–A Tale of Early Hearing Detection and Intervention

Early hearing detection and intervention (EHDI) is guided by the 1-3-6 approach: screening by one month, diagnosis by 3 mo, and early intervention (EI) enrollment by 6 mo. Although screening rates remain high, successful diagnosis and EI-enrollment lag in comparison. The aim of this systematic review is to critically examine and synthesize the barriers to and facilitators of EHDI that exist for families, as they navigate the journey of congenital hearing loss diagnosis and management in the United States. Understanding barriers across each and all stages is necessary for EHDI stakeholders to develop and test novel approaches which will effectively reduce barriers to early hearing healthcare. A systematic literature search was completed in May and August 2021 for empirical articles focusing on screening, diagnosis, and EI of children with hearing loss. Two independent reviewers completed title and abstract screening, full-text review, data extraction, and quality assessments with a third independent reviewer establishing consensus at each stage. Data synthesis was completed using the Framework Analysis approach to categorize articles into EHDI journey timepoints and individual/family-level factors versus system-level factors. Sixty-two studies were included in the narrative synthesis. Results revealed that both individual/family-level (e.g., economic stability, medical status of the infant including middle ear involvement) and system-level barriers (e.g., system-service capacity, provider knowledge, and program quality) hinder timely diagnosis and EI for congenital hearing loss. Specific social determinants of health were noted as barriers to effective EHDI; however, system-level facilitators such as care coordination, colocation of services, and family support programs have been shown to mitigate the negative impact of those sociodemographic factors. Many barriers exist for families to obtain appropriate and timely EHDI for their children, but system-level changes could facilitate the process and contribute to long-term outcomes improvement. Limitations of this study include limited generalizability due to the heterogeneity of EHDI programs and an inability to ascertain factor interactions.

The Big Screen Difference

To be successful, Early Hearing Detection and Intervention (EHDI) programs require individually identifiable information about children to be shared among people who are responsible for screening, diagnosis, early intervention, family support, and medical home services. Pediatricians and other stakeholders in the EHDI process often point to federal laws that were passed to ensure privacy and confidentiality in health care and educational programs as major obstacles to achieving efficient and effective EHDI programs. In this article we summarize the provisions of 3 federal laws (the Health Insurance Portability and Accountability Act [HIPAA], the Family Education Rights and Privacy Act [FERPA], and Part C privacy regulations of the Individuals With Disabilities Education Act [IDEA]) that most directly affect information-sharing in EHDI programs. We suggest strategies for sharing the information needed to operate successful EHDI programs while remaining in compliance with these laws, including obtaining signed parental consent to share information between providers, including an option on the individual family services plan for parents to permit sharing of the plan with pediatricians and other providers, and giving copies of all relevant test results to parents to share with providers as they wish.

EHDI Services: Who Pays for What?

You have accessThe ASHA LeaderPolicy Analysis1 Jul 2009State Laws Improve Hearing Screening Follow-Up Rend Al-MondhiryJD Rend Al-Mondhiry Google Scholar More articles by this author , JD https://doi.org/10.1044/leader.PA2.14092009.9 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In Recently enacted state legislation in Kentucky and Iowa will increase the number of infants who receive follow-up diagnostic assessments and early intervention services after failing a newborn hearing screening. The new laws reflect a growing nationwide trend to implement Phase II initiatives in early hearing detection and intervention (EHDI). The successful Phase I effort to mandate newborn hearing screening in all hospitals and birthing centers raised the number of newborns screened from 38% in 2000 to 96% in 2009. Phase II extends that effort with initiatives that improve tracking and surveillance to reduce the number of cases lost to follow-up; address privacy concerns associated with the exchange of health-related information; provide comprehensive coverage of early intervention and amplification devices; and promote an unbiased, family-centered approach to help parents make the best early intervention choice for their child. Nationally, 46% of the infants born in 2006 did not complete follow-up after a failed newborn hearing screening and are considered “lost to follow-up” or “lost to documentation.” The new laws will help ensure that newborns and infants with hearing loss receive needed audiological and early intervention services and will help reduce the number of infants lost to follow-up by strengthening the requirements for reporting hearing screening results and diagnostic assessments. Kentucky The Kentucky law requires the Kentucky Commission for Children with Special Health Care Needs to establish standards for infant audiological assessment and diagnostic centers based on national standards, including those established by ASHA and the Joint Committee on Infant Hearing (JCIH). The law includes new reporting requirements: Diagnostic centers must provide data to the commission within 48 hours regarding children ages birth to 3 who are newly identified with permanent hearing loss and also must refer those children to the state’s early intervention system. In addition, if a newborn fails a hearing screening, the hospital or birthing center must forward the screening report to the child’s primary care provider, the child’s parent(s), the commission, and an audiological assessment and diagnostic center, if follow-up is needed. (Previously the law did not require the report to be sent to a diagnostic center.) Finally, the law also expands the definition of “infant at risk for late-onset, progressive hearing loss, or both”; the expanded definition will help identify more infants who have a higher-than-normal risk of becoming deaf or hard of hearing, and who should therefore be monitored for hearing loss. Iowa In Iowa, the new law requires a hospital, birthing center, or person performing a hearing screening to report the results or screening status to the primary care provider of the infant upon discharge from a hospital or birthing facility, not to just the infant’s parents, as previously required. The information must now include, in addition to existing reporting requirements, information about the primary care provider, any known risk indicators for hearing loss, and other information specified by the Iowa Department of Public Health. An audiologist who conducts diagnostic audiological assessments of newborns and infants will now be required to do so in accordance with the department’s standards; the audiologist’s report to the department must now include the assessment results and any known risk indicators. Strengthened Requirements With mandates to report hearing screening and diagnostic assessment data, states are helping to ensure that all newborn infants are screened and that those with hearing loss—or at risk for later-onset hearing loss—are identified as early as possible and receive appropriate follow-up services. The new laws in Kentucky and Iowa reflect a growing trend to strengthen reporting and documentation requirements and improve all aspects of EHDI, such as enrollment in early intervention services and mandated coverage of hearing aids by insurance providers. Other aspects of EHDI, however, remain in need of improvement, such as the availability of culturally competent family resources, information for parents of children with hearing loss, and use of computerized data management systems to record, track, and monitor hearing health throughout childhood. ASHA is continuing to work with state associations and EHDI professionals nationwide to advance and implement Phase II objectives. ASHA plans to update the model bill in the near future to incorporate the next phase of its EHDI campaign: promoting lifetime screening. ASHA will focus on the importance of continued hearing screening at 12–18 months, pre-kindergarten, and elementary school. For more information on EHDI, including Phase II state model legislation and talking points, state laws, and federal information, go to ASHA’s Early Hearing Detection & Intervention Action Center. Author Notes Rend Al-Mondhiry, JD, director of state legislative and regulatory advocacy, can be reached at [email protected] or 800-498-2071, ext. 5665. Advertising Disclaimer | Advertise With Us Advertising Disclaimer | Advertise With Us Additional Resources FiguresSourcesRelatedDetails Volume 14Issue 9July 2009 Get Permissions Add to your Mendeley library History Published in print: Jul 1, 2009 Metrics Downloaded 70 times Topicsasha-topicsleader_do_tagleader-topicsasha-article-typesCopyright & Permissions© 2009 American Speech-Language-Hearing AssociationLoading ...

Congenital hearing loss affects one to three of every 1,000 live born infants and negatively impacts children through delayed speech, language, social, and emotional development when undetected. To address this public health issue, jurisdiction-based Early Hearing Detection and Intervention (EHDI) programs are working to ensure all newborns are screened for hearing loss, receive follow-up diagnostic testing (DX) if they do not pass the screening, and are enrolled in early intervention (EI) services if diagnosed with a permanent hearing loss. Although substantial progress has been made in the provision and documentation of services, challenges remain because, unlike screening results, diagnostic test results and enrollment in EI are not consistently reported to the EHDI programs. Therefore, it is difficult for states and territories to know if infants received recommended follow-up services (diagnostic testing and/or EI services), often resulting in infants being classified at either stage as lost to follow-up (LFU)/lost to documentation (LTD). To assess progress toward identifying children with hearing loss and reducing LFU/LTD for DX (LFU/LTD-DX) and EI enrollment (LFU/LTD-EI), CDC analyzed EHDI surveillance data for 2006-2012. Results indicated that the number of jurisdictions reporting data increased from 49 to 57, rates of screening increased from 95.2% to 96.6%, rates of referral from screening decreased from 2.3% to 1.6%, rates of diagnosis among infants not passing their final screening increased from 4.8% to 10.3%, and enrollment in EI among children diagnosed with hearing loss increased from 55.4% to 61.7%, whereas rates for both LFU/LTD-DX and LFU/LTD-EI declined. These findings show sustained progress toward screening, identification, and enrollment in EI as well as highlighting the need for continued improvements in the provision and documentation of EHDI services.

The SLP and Early Intervention with Infants and Toddlers with Hearing Loss

Early Hearing Detection and Intervention (EHDI) programs are essential for identifying and supporting Deaf and hard-of-hearing (DHH) children. In South Africa, caregivers are central to EHDI success; however, systemic barriers, limited information, and societal stigma impact their ability to engage effectively in these services. This study aimed to explore caregivers’ experiences and perceptions of their role in EHDI for their DHH children, identifying barriers they face and the way these influence their engagement with EHDI services. A qualitative, phenomenological research design was employed. Twelve primary caregivers were recruited through purposive, snowball sampling from both public and private healthcare settings. Data were collected using in-depth, semi-structured interviews and analysed through inductive thematic analysis. Four themes were identified through a structured coding process: 1) challenges in accessing healthcare services, with barriers including long distances, high costs, and extended waiting times in public healthcare settings; 2) lack of awareness and guidance; 3) emotional stress due to diagnosis and caregiving responsibilities, with participants highlighting psychological distress, uncertainty about their child’s future, and experiences of societal stigma; and 4) positive experiences with private healthcare providers. Findings underscore the need for accessible, family-centred, and culturally sensitive EHDI services in South Africa. Expanding healthcare access, improving provider-caregiver communication, strengthening public awareness campaigns, and integrating structured caregiver support networks are essential steps towards improving outcomes for DHH children. Lessons from global best practices in both low – and middle-income countries (LMICs) and high-income countries (HICs) could inform strategies for enhancing South Africa’s EHDI framework.

New Regulations Affect Early Intervention Clinicians

BackgroundThe national prevalence of hearing impairment in South Africa is estimated to be four to six in every 1000 live births in the public health care sector. An undetected hearing impairment in childhood can lead to delayed speech and language development as well as put the child at risk of not achieving the necessary school readiness abilities that will enable them to achieve academic success. However, through early hearing detection and intervention services, children with hearing impairment can develop communication and school readiness abilities on par with children with normal hearing.ObjectiveThe aim of the study was to describe communication and school readiness abilities of children who were identified with hearing impairment and enrolled in early intervention (EI) preschools in Gauteng.MethodsWithin a descriptive research study design, a retrospective record review was conducted on files of eight children, ranging in age from 9 years and 7 months to 12 years and 7 months, identified with a hearing impairment and enrolled in EI preschools in Gauteng, South Africa. Descriptive statistics were used to analyse the data, using frequency distribution and measures of central tendency.ResultsCurrent findings revealed that children with hearing impairment who were enrolled in EI preschools in Gauteng were identified late. This consequently led to delayed ages at initiation of EI services when compared to international benchmarks and the Health Professions Council of South Africa’s (HPCSA) guidelines of 2018. Consequently, participants presented with below average communication and school readiness abilities, which are characteristic of hearing impairment that is identified late.ConclusionsTransference of current contextually relevant research findings into practice by both the Department of Health and the Department of Basic Education forms part of future directions from this study. This conversion of research findings into service delivery must be conducted in a systematic manner at all levels in these two sectors to facilitate achievement of Early Hearing Detection and Intervention (EHDI), resulting in better communication and school readiness outcomes.

The Hearing Loss Talk

BackgroundWith 17 babies born with hearing loss every day in South Africa, there is a pressing need for systematic Early Hearing Detection and Intervention (EHDI) services. Progress is being made in offering newborn hearing screening and studies have been conducted to document these processes within South Africa. However, due to the lack of a national and holistic overview of EHDI services to date, an accurate picture of the current status of EHDI within the South African context is required.ObjectiveTo document and profile what has been published within the field of EHDI in South Africa over the last two decades (Jan 1995–Sept 2014) in order to gain a comprehensive overview of the current status and practice of screening and diagnosis in the field of paediatric hearing loss.MethodA narrative review of peer-reviewed articles related to EHDI in South Africa was conducted by searching the EBSCOHOST, SCOPUS and JSTOR databases for the period January 1995 to September 2014.ResultsResults indicate that over the last two decades research and publications in the field of EHDI have increased considerably. These publications have revealed extensive knowledge related to paediatric hearing screening and intervention services in South Africa; however, this knowledge seems to be limited primarily to the provinces of Gauteng and the Western Cape. Furthermore, studies pertaining to diagnosis have revealed that, although much has been written on the scientific aspects on tools for diagnosis of hearing loss, there is a lack of comprehensive information on diagnostic protocols and procedures.ConclusionDespite the clear progress being made in South Africa in the field of early hearing detection and intervention, there is a need for comprehensive studies on protocols and procedures in diagnosing paediatric hearing loss. Finally, the narrative review revealed a clear need to ensure that development and growth in the field of EHDI is a national priority and extends beyond the two provinces currently showing growth.