Newborn Screening & Genetic Services

“Any Audiologist who works with small children has an obligation to take both testing and follow-up management very seriously – audiology offers no greater challenge and responsibility”

       -Martin F & Clark J. Behavioral hearing tests with children. In Hearing Care for Children 1996, page 133.

Universal newborn hearing screening has been the standard of care for all babies born in New Jersey since January 1^st, 2002.  Audiologists have a key role in providing a seamless progression of hearing health care throughout the EHDI process through direct provision of timely follow-up screening and/or diagnostic pediatric audiologic testing, audiologic monitoring and prompt referral to the New Jersey Early Intervention System for those children under age three that are diagnosed with hearing loss.

Audiologists may be the first professional contacted after an infant refers on their hearing screening and are the most appropriate clinician to conduct diagnostic testing to determine an infant child’s hearing status.

The 2019 Joint Committee on Infant Hearing Position Statement indicates the following guidelines for infants who refer on hearing screening for one or both ears:

• Infants who did not pass an Auditory Brainstem Response (ABR) screening while in the nursery optimally should be re-screened with ABR technology as an outpatient or referred for a diagnostic ABR evaluation to rule out auditory neuropathy spectrum disorder (ANSD).
• Infants who are present with a unilateral ‘refer’ result on hearing screening, must have both ears assessed at their rescreening or diagnostic audiologic test follow-up visit.

To provide timely and accurate reporting to the parents and the EHDI team, audiologists must perform all audiological tests necessary for an appropriate diagnosis of hearing loss in one or both ears. Evidence based best practices for pediatric audiologic assessments at various ages can be found in the Joint Committee on Infant Hearing Position Statement

Follow-up audiologic evaluation appointment dates and, if applicable, alternate audiology locations (in the event higher level audiologic testing is not available at the current audiology practice) should be indicated on the Newborn Hearing Follow-Up Report form and whenever possible scheduled appointments should coincide with the 1-3-6 rule.

Every New Jersey licensed audiologist must be mindful of their regulatory responsibility of reporting test results/recommendations to the NJ EHDI program within ten days of a child’s hearing evaluation. State mandated reporting requirements for audiologists are noted in EHDI Administrative Rules and are also contained in the NJ Division of Consumer Affairs, Audiology and Speech-Language Pathology Advisory Committee Rules (13:44C-7.2B)

When audiologists comply with these mandated guidelines, the New Jersey EHDI program can ensure that all children born or residing in New Jersey have received appropriate audiology services. In addition, reporting of both in-patient and out-patient results allows the EHDI program to provide individualized follow-up on babies that have not completed additional necessary follow-up testing.

Mandatory reporting information includes: confirmatory, ear-specific screening (or re-screening) and/or diagnostic audiologic test results and recommendations as well as documentation of missed appointments. If test results are incomplete (e.g., are not ear specific or inconclusive regarding the type of hearing loss measured), audiologists are still required to report these limited findings. In these circumstances, the audiologist is also required to document the time frame for which the child needs to receive a follow-up audiologic assessment. If an audiology facility is unable to perform necessary evidence based testing, they should maintain a list of local facilities that can provide pediatric audiologic services needed to obtain confirmatory results. Audiologic facilities in and around New Jersey can be located via the NJ Pediatric Hearing Health Care Directory.

Within 10 days of examination or a missed appointment providers must report to the EHDI program via:

• Paper: SCH-2 form
• Electronically: Via the EHDI module in the New Jersey Immunization Information System. 
  To request access to that system, complete an EHDI User Enrollment Form and NJIIS User Confidentiality Agreement

1. Once a permanent hearing loss (of any degree, in one or both ears) is diagnosed, the audiologist should immediately initiate the referral process for the New Jersey Early Intervention System (NJEIS). Parents/caregivers should be counseled on how research supports the positive outcomes in language development for infants who receive EI prior to 6 months of age. Families should still be advised to follow-up with the NJEIS system point of entry (SPOE) phone number (1-888-653-4463) to begin the referral process for NJEIS. The EHDI program strongly recommends that, if possible, you have the family call the toll-free EI number above from your office on the day of diagnosis to initiate the referral to NJEIS.
   
   
2. Offer families the opportunity to sign the Release of Information form which would allow transfer of audiologic records to NJEIS, and initiate the process for offering to the parent service of one of the NJEIS EHDI “Hearing Consultants.” The role of the NJEIS consultants is to assist families of children (birth to age 3) that have been newly diagnosed with hearing loss by providing unbiased information regarding communication choices and assist the parents in understanding the needs of their child and family in preparation for the development of an Individualized Family Service Plan (IFSP). In addition, the role of the Consultants is to provide timely, unbiased and complete information regarding hearing loss, communication options, benefits of EI services, relevant and useful national and local resources related to children with hearing loss and their families and information on how to connect with other families who have a D/HH child.
   
   
3. Complete a Newborn Hearing Follow-Up (SCH-2) form (see above)
   
   
4. Complete and submit a New Jersey Birth Defects Registration (SCH-0) form within 10 days of your diagnosis of the child’s hearing loss. If the child’s hearing loss had been diagnosed prior to their visit with you, do not assume that reporting to the BDR has occurred and submit a new or updated SCH-0 form to the New Jersey Birth Defects Registry. For access to electronic reporting system, contact the Birth Defects Registry (BDR) program.
   
   BDR registration serves epidemiologic surveillance objectives, provides a referral for case management services and also is required for any family who wishes to pursue funding assistance through the hearing aid assistance program through the Special Child Health Services program.

Complete and submit a New Jersey Birth Defects Registration (SCH-0) form within 10 days of your diagnosis of the child’s hearing loss.  If the child’s hearing loss had been diagnosed prior to their visit with you, do not assume that reporting to the BDR has occurred and submit a new or updated SCH-0 form to the New Jersey Birth Defects Registry.  For access to electronic reporting system, contact the Birth Defects Registry program .  An SCH-2 form is not required for children over age 3.

BDR registration serves epidemiologic surveillance objectives, provides a referral for case management services and also is required for any family who wishes to pursue funding assistance through the hearing aid assistance program through the Special Child Health Services program.

Another important way pediatric audiologists can connect families to the EHDI process is with data management. Data management elements provide us performance indicators and can help both the EHDI program and the audiologist monitor how quickly infants are being referred for rescreening and/or diagnostic follow-up as well as to support evidence-based practice regarding the documentation of test results and recommendations. The primary purpose of tracking, reporting and follow-up is to ensure that all babies are screened and that those in need of further testing, evaluation or intervention receive comprehensive, appropriate and timely services.

For the New Jersey EHDI audiology community, the New Jersey EHDI program provides performance feedback individual facilities and Statewide averages through the annual “Audiology Facility Report.” These reports provide information about the several indicators of timeliness and quality of reports received by the New Jersey EHDI program.   These reports are sent to any audiology practice that has submitted a Newborn Hearing Follow-up Report (SCH-2) to the NJ EHDI within the current calendar year. Audiology facilities are encouraged to review these statistics regularly and use this information to improve provision of pediatric audiology services as well as their compliance with regulatory reporting requirements at their site.

To learn more about the Audiologist's regulatory reporting responsibilities in the EHDI program, watch our educational webinar.

The New Jersey Pediatric Hearing Health Care Directory allows both families and professionals to locate audiology, hearing aid dispensing and otolaryngology offices that provide services to children from birth through 21 years of age. The Directory lists facilities by name, city and county and, in the case of the audiology facilities, further categorizes these sites by the level of comprehensive care that they provide. Directory listings are updated annually to ensure the most up-to-date information for each site.  Providers who responded that they wished to be included in this Directory are listed, however, it should be noted that a listing in this Directory in no way implies the endorsement by the New Jersey EHDI Program or the New Jersey Department of Health.  Click here to add your facility to the Directory.

Note that Audiology Facilities listed in this Directory are categorized by Facility Levels.  Audiologists who provide assessment and management of infants and children with hearing loss must have the knowledge, skill, and instrumentation necessary for use with current pediatric hearing assessment methods.

Facilities that lack the necessary expertise and/or equipment to work with infants and toddlers should establish consortial arrangements with those that do, so that families are referred appropriately in a timely manner.

The American Cleft Palate and Craniofacial Association publishes “Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies” that lists comprehensive guidelines for the audiologic management of children with facial differences as many of them are at risk for hearing loss and middle ear pathology.

Infants born with unilateral or bilateral external auditory canal atresia should be referred by their birthing hospital directly to an audiologist for diagnostic audiologic evaluation, including bone conduction ABR studies, of each ear no later than 3 months of age.

Children with atresia should be referred to the NJEIS and should also be referred to a Regional Cleft Lip/Palate and Craniofacial Center for multidisciplinary team evaluation.