Connecting Families to the Early Hearing Detection and Intervention (EHDI) Process

Introduction

Early hearing detection and intervention (EHDI) is the process of identifying infants at birth, or shortly thereafter, who have a hearing loss. It is the provision of appropriate intervention services to maximize the infant's linguistic and communicative competence. This process may mean different things to professionals who make up the EHDI team. The "team" refers to the infant's family and to those professionals who work with the infant to identify the hearing loss and provide medical, educational, and developmental intervention as needed. Early intervention has a different implication to each member of the team, and may have a different meaning depending on what that team member's responsibility is.

• To the family, EHDI may initially mean nothing. What it comes to mean to the family will depend on the individual services and educational programs they receive by the pediatric audiologist and other members of the EHDI team.
  
  
• To public health personnel, EHDI may mean the requirement of their state or public health initiative to provide a hearing screen to every infant born. This may require intense data management and follow-up according to their state rules.
  
  
• To hospital personnel, EHDI may mean providing the hearing screen to every infant born in their facility by establishing a program manager and identifying and training individuals to provide the hearing screen. It may mean data management that is forwarded to the state according to state law.
  
  
• To audiologists, EHDI may mean audiological screening, a diagnostic battery of tests, possible hearing aid fitting, extensive aural habilitation and communication with numerous health care providers.
  
  
• To physicians, EHDI may mean a process of medical tests, x-rays and medical management with referrals to an otolaryngologist, geneticist, ophthalmologist, cardiologist or other health professionals.
  
  
• To the early interventionist, EHDI may mean the process of guiding families through family-centered care to include speech pathology, deaf and hard-of-hearing education services and/or early childhood special education services.

More salient for this forum, to the pediatric audiologist the EHDI team is a family-professional partnership that supports collaborative sharing of audiological information. It is a partnership which is defined as "a relationship of mutual respect between two or more competent persons who have agreed to commit and share their knowledge, skills, and experience in meeting the needs of the child" (SKI-HI Curriculum Vol. 1, 2004, page 20).

The responsibilities of the EHDI team are critical. They should be part of a seamless progression of care to provide infants and their families' timely and appropriate intervention services. More often than not, these professionals also are involved in the process of guiding families through the often emotionally draining experience of an initial diagnosis of hearing loss for their newborn child. What often gets less attention is the actual transition and preparation of these families through the maze of referrals and tests after a hearing loss has been identified.

Individual EHDI team members may work diligently to complete their portion of the process; however, communication between other professionals and the infant's caretakers sometimes is neglected. Team members may even see the infant concurrently, possibly leading to confusion, misunderstandings, dropped appointments, and lost families in the EHDI process. The audiologist has a unique opportunity and responsibility to facilitate a seamless transition for families and their infants through the EHDI process. The audiologist is often the first contacted after a failed hearing screen and often the first to diagnose an infant's hearing loss. Therefore, the test information and recommendations they provide are critical in the decision-making processes of other professionals. So, what is the audiologist's professional responsibility to infants and their families? How can the audiologist help families connect to the EHDI process?

Newborn Hearing Screenings and Intervention

Approximately 93% of all infants born in the United States are receiving a hearing screen shortly after birth (NCHAM, 2006). However, in many areas across the United States, only 50% of infants who fail or miss their newborn hearing screen return for follow-up testing. Barriers to follow-up testing may be due to changes in the family's contact information, financial constraints, language barriers, parents not recognizing the urgency for early intervention, or a lack of a primary medical provider. Families who live in under-served areas may have less accessibility and fewer professional resources available to them (JCIH, 2000). If a child does return for the follow-up screen, referral for a diagnostic audiological evaluation may be delayed due to insurance coverage, waiting lists, or ill-prepared audiological centers. In addition, 30-40% of children with hearing loss demonstrate additional disabilities which may affect communication and related development (JCIH, 2000). In order to improve early intervention services and overcome these barriers, greater communication is needed between the members of the EHDI team. As the audiologist is often the first contact after a failed hearing screen, he or she carries a particular responsibility to facilitate communication with the infant's primary care physician and other EHDI team members.

According the University of Nebraska Medical Center (2007), the definition of professional responsibility is:

The moral responsibility that arises from the special knowledge that one possesses. It is mastery of a special body of advanced knowledge, particularly knowledge which bears directly on the well-being of others that demarcates a profession. As custodians of special knowledge which bears on human well-being, professionals are constrained by special moral responsibilities; that is, moral requirements to apply their knowledge in ways that benefit the rest of the society.

Audiologists have that special knowledge regarding the identification and diagnosis of hearing loss in infants. As such, audiologists must apply this knowledge in ways that benefit the infant and family. The importance of early identification of hearing loss has been documented and is well understood by the audiologist (Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998; Moller, 2000). In audiology, we are fortunate to have position statements that provide a standard of care for infants identified with hearing loss. The Joint Committee on Infant Hearing (JCIH) Year 2000 Position Statement provides timelines or benchmarks for assessment of infants. This timeline is often called the 1- 3 - 6 rule:

• Newborns screened by 1 month;
  
  
• Infants with hearing loss identified by 3 months;
  
  
• Amplification use begins within 1 month of diagnosis;
  
  
• Infants enrolled in family-centered early intervention by 6 months;
  
  
• Ongoing audiological management not to exceed 3 month intervals.

There is no reason that these timelines would preclude earlier diagnosis and intervention, but they do provide a reasonable time frame to initiate audiological diagnosis and follow-up. Audiologists have a professional responsibility to be vigilant in following these timelines whenever possible, recognizing and being considerate of the grieving process of families with a newly identified, deaf or hard-of-hearing infant. There may be times when adherence to the 1-3-6 rule is not possible due to medical complications with the infant, finances, mixed feelings, and parental anxiety after the initial diagnosis. However, by adhering to these timelines, audiologists not only obtain an early diagnosis of hearing loss, they initiate hearing aid fittings at the earliest point. They also enable other EHDI team members to initiate services for the infant and family in a timely manner.

In order to provide timely and accurate reporting to the parents and the EHDI team, the audiologist must perform all audiological tests necessary for an appropriate diagnosis of hearing loss. Audiologists can use the cross-check principle, defined as "the desirability of using multiple tests in clinical practice based on the complex nature of the auditory mechanism and the fact that auditory dysfunction may result from pathology at one or more levels" (ASHA, 2004, Pg.2). Additionally, the cross-check principle requires that one test agrees with, or confirms, another test's results, thus providing a reliability check between the two tests for pediatric test protocols (Jerger & Hayes, 1976; Turner, 2003). Best practices for pediatric assessments include:

• Comprehensive medical history summary;
  
  
• Auditory Brainstem Response (ABR) evaluation to include tone burst and bone conduction testing;
  
  
• Auditory Steady-State Response (ASSR);
  
  
• Immittance testing to include high-frequency tympanometry for infants
  
• Otoacoustic Emissions (OAE);
  
  
• Behavioral Audiometry testing (when age appropriate);
  
  
• Real-Ear Measurement.

Although there are no mandated national protocols for the assessment of infants, many states have guidelines for audiologists. These guidelines can be accessed via the National Center for Hearing Assessment and Management (NCHAM) website at www.infanthearing.org/stateguidelines/index.html

Pediatric Specialty

Another way of connecting families to the EHDI process is the identification of a key audiologist within a practice or hospital whose primary responsibility is working with infants and toddlers. If there is no such person, then a referral to a site that specializes in pediatric audiology is important. A specialty interest in pediatrics is critical for the establishment of a "Center of Excellence" for infants and toddlers. "Center of Excellence" has been defined by various organizations in similar ways, but in relation to Pediatric Specialty, it suggests an audiological center that provides follow-up on newborn hearing screening, comprehensive audiological diagnostics, hearing aid fitting, aural habilitation and ongoing monitoring and care for the deaf or hard of hearing infant. It also suggests a center that is "child friendly, has a child-knowledgeable staff, facilities, services and equipment to facilitate optimal comprehensive audiological assessment and management. (ASHA, 2006, Pg.2) The American Speech Language and Hearing association (ASHA) has published two documents that further discuss the uniqueness of a pediatric audiology specialty (2004; 2006).

ASHA (2006) indicates that underlying all aspects of an audiology practice serving the pediatric population are four elements:

• Accessible, continuous, comprehensive, coordinated, and compassionate care;
  
  
• Family-centered and culturally competent care;
  
  
• Extensive knowledge of social, emotional, cognitive, and communicative development that serves as the foundation for the optimal development of the whole child and the provisions of developmentally-appropriate care;
  
  
• Evidence-based practice.

These elements suggest that pediatric audiologists should have the appropriate equipment and protocols for testing newborns and young infants. The audiologist should be able to provide services in a timely manner without an extensive waiting list. They should be willing to honor the cultural differences of family units when reviewing audiological test results (e.g., providing an interpreter or literature in the family's native language).The audiologist should provide a comprehensive written report in a timely manner, that is provided to the family, as well as to each EHDI team member. This would require the audiologist be familiar with the procedures of The Program for Infants and Toddlers with Disabilities, or Part C of the Individuals with Disabilities Education Act (IDEA), which includes the Individualized Family Service Plan (IFSP) development and procedures for acquiring hearing aids or assistive technology (IDEA, 1997; 2004). "The pediatric audiologist should demonstrate interpersonal skills that promote effective communication with children, their families, and fellow professionals in the health care, early intervention and educational communities" (ASHA, 2006).

Pediatric audiologists may also be responsible for educating and supporting the family's understanding of language options in an unbiased manner. The audiologist should provide the family with information regarding the various communication options and consider providing information in more than one teaching format (e.g., reading materials in the family's language, internet sites for in-depth discussion of philosophies, DVD training materials). Today's family is even more computer savvy than generations before, and the audiologist should be aware of the resources available to the family through multi-media outlets.

Selection of amplification and assistive listening devices can be a daunting task for families. The audiologist should be cognizant of the feelings of the family and provide support when it comes to selecting the optimal system for an infant. As with providing information regarding communication options, the audiologist also should consider a multi-media format for family learning. Guidelines have been developed to assist the pediatric audiologist in establishing evidence-based procedures for the assessment, selection, verification and validation of hearing aid instruments (AAA, 2003; Beauchaine, 2002).

Once a hearing loss is indicated, the pediatric audiologist should immediately initiate the referral process for early intervention services. Additional audiological testing may be necessary to determine specific thresholds of hearing; however, there should be no delays in referring the infant and family to the other members of the EHDI team. Audiologic practice patterns must bridge Universal Newborn Hearing Screening programs (UNHS) with early intervention programs once an infant is identified with a hearing loss.

Connecting families to the EHDI process involves more than providing a hearing screen and diagnostic follow-up, and more than providing hearing aids to infants. The pediatric audiologist is charged with educating the team, the family, and the public concerning the entire EHDI process. Terminology should be demystified. Expectations and timelines should be clearly identified to help decision making by all parties. There are a number of resources available for families and team members (Appendix 1). The pediatric audiologist should consider meeting with parent groups, school programs for the deaf and hard of hearing, early intervention agencies, and medical associations to explain the EHDI process and answer any questions concerning audiological assessment and habilitation.

Materials for teaching should be varied. A recent article in the Journal of the American Academy of Pediatrics by Moller, White, and Shisler (2006) indicated that primary care pediatricians prefer their knowledge gaps be addressed through provision of:

• Action-oriented resources (algorithms/protocol cards, parent education materials);
  
  
• Web-based materials;
  
  
• Online CME and materials for peer education.

Additional resources may include the Infant Hearing Guide, which is a series of digital multimedia resource materials developed by University of Arkansas for Medical Sciences and Arkansas Children's Hospital (NCHAM, 2007); Centers for Disease and Control and Prevention provides a web site of Frequently Asked Questions (see www.cdc.gov/ncbddd/ehdi/question.htm). Resources are innumerable, but often are better understood when the pediatric audiologist sits down with the family and reviews the materials.

Another important way pediatric audiologists can connect families to the EHDI process is with systematic data management. This data management system does more than track infants who are tested. Even the simplest of software programs generate an astounding amount of data which can quickly overwhelm the capacity of a poorly conceived management system. When all the information necessary to follow-up and track babies is included, program design becomes more complex. Data management elements provide us performance indicators. It can help the pediatric audiologist monitor how quickly infants are being referred for diagnostic follow-up and if the infant received an evaluation by 3 months of age. A data management system can help flag an infant for a return visit so the infant does not get lost to follow-up. With more than 50% of infants not returning for follow-up after failing the initial hospital screen, this data point is critical. Data management can generate follow-up letters for return visit schedules for babies diagnosed with hearing loss, as well as for babies who are at risk for late onset or progressive hearing loss. Data management supports evidence-based practice regarding the documentation of test results, recommendations, and referrals to members of the EHDI team. There are many tracking programs available, thus the pediatric audiologist should carefully review each one to find the system that best meets the organization's needs. A list of tracking programs can be found on the National Center for Hearing Assessment and Management website (see www.infanthearing.org/datamanagement/index.html).

Diagnostic Reports

Another way audiologists can connect families to the EHDI process is through their written diagnostic report. It is important to improve communication of test results to other professionals in unrelated fields. Some considerations when writing reports for the EHDI team are:

• Does the report address the hearing status of each ear in a clear manner using common terminology?
  
  
• Are the recommendations consistent with the test findings?
  
  
• Are timely follow-up appointments established when necessary?
  
  
• Are referrals made to the appropriate educational and medical facilities?

Audiologists have a professional responsibility to improve understanding of audiological data to others. Even when audiologists have training and skills specific to infants, there is wide variability in the way results are presented in written reports. The report must contain terminology that is professionally accurate, yet clearly communicate findings to both audiologists other professionals; furthermore, the summary of the test results should be written with other disciplines in mind. Acronyms should be spelled out, to facilitate understanding to those unfamiliar with audiological terminology (e.g., ASSR, ABR, OAE, DNT, SRT). Although physicians and early interventionists may have some knowledge of audiology, the audiological profession and its terminology continues to change with the addition of new tests and procedures over time.

To assist families and other professionals in understanding audiological terminology, several websites have been established with comprehensive glossaries and explanation of acronyms. It is important that the pediatric audiologist either provide that information or direct families and team members to the web sites with a listing of commonly used terminology. Examples of this information can be found at My Baby's Hearing (www.babyhearing.org/HearingAmplification/Glossary/index.asp) or Texas Connect (www.callier.utdallas.edu/txcterms.html).

Connecting families to the EHDI process may require audiologists to re-think how to communicate with the team. Because audiologists are known to use acronyms as a way to recall information, perhaps the "HEAR" method may be an easy way to remember what should remain consistent between reports:

• H: History (medical and audiological);
  
  
• E: Evaluation of all tests that were performed;
  
  
• A: Audiological summary for each ear;
  
  
• R: Review of test results with recommendations.

History of the case, both medical and audiological, should be reported in any audiological report, as fundamental aspects of an infant's history may contribute to the decision processes of other team members. Some questions the audiologist may ask are:

• Was there a hearing screen at birth? What were the results?
  
  
• Have there been subsequent audiological examinations since the newborn hearing screen?
  
  
• Were there any medical complications that may put the infant "at risk" for progressive or late-onset hearing loss?
  
  
• Were there any surgeries performed for chronic middle ear effusion?
  
  
• Is there a family history of hearing loss?

Evaluation of all diagnostic testing should be reported. Was a cross-check principle used? If certain diagnostic testing was not performed, why was it not performed? It is important that the audiologist not leave team members wondering why certain procedures were or were not performed.

Audiological summaries should state the hearing status of each ear in a clear and concise manner, using common terminology. If testing was incomplete for an ear or the hearing status has changed, an explanation should be provided. In addition, the summary should include a description of the functional implications of the hearing loss for the infant in a variety of circumstances, with or without recommended amplification. This statement should help team members understand the relationship of the impact of the hearing loss as it relates to language and speech. For example, the audiologist may write something similar to the following for a severe hearing loss:

Without amplification this child cannot hear soft sounds or normal conversational speech. Speech and language will not develop without intervention. This child will benefit from early intervention with the use of appropriately fit amplification by a pediatric audiologist and special educational services that includes the Early Childhood Intervention (ECI) program.

Recommendations should be consistent with the test findings. Follow-up appointments should be indicated with a specific timeline of services. Whenever possible, appointment dates and locations should be indicated. If additional hearing testing is necessary, scheduled appointments should coincide with the 1-3-6 rule. Referrals to the appropriate medical/educational facilities should be designed to meet the unique needs of the infant or toddler and family. The referral name of the Early Intervention Coordinator/Agency should be listed in the report.

Conclusion

In summary, connecting families to the Early Hearing Detection and Intervention Process (EHDI) is critical for infants to receive optimal linguistic and communicative outcomes. The audiologist has a key role providing a seamless progression of care in the EHDI process. They connect families by:

• Providing timely follow-up screening for infants who fail newborn hearing screenings;
  
  
• Identifying a pediatric audiologist who has the appropriate training and audiological equipment necessary for testing, ultimately demonstrating a "Center of Excellence;"
  
  
• Performing ALL audiological tests necessary for an appropriate diagnosis of hearing loss in an infant, using the Cross Check Principle;
  
  
• Writing a clear and concise report that includes a(n):
  
  
  
  
  • History, medical and audiological;
    
    
  • Evaluation of all tests performed;
    
    
  • Audiological summary that addresses not only the hearing loss, but the functional implications of the hearing loss;
    
    
  • Recommendations and referrals.
  
  
• Educating families and "team" members using a multi-media approach concerning EHDI and audiological testing for better communication among all disciplines;
  
  
• Implementing a comprehensive database for program accountability, reduction of loss to follow-up, and to ensure infants are assessed, diagnosed, fit with amplification, and referred to the EHDI team in a timely manner consistent with the profession's standard of care.

For years, audiologists have made it a goal to identify hearing loss in infants as early as possible so that optimal access to speech and language could be provided. As this goal was realized in many states over a number of years, audiologists became overwhelmed with the numbers of babies who needed help. Regardless of a person's philosophy on deafness, infants with hearing loss and their families have a difficult road ahead of them. Audiologists have a professional responsibility to help infants and their families connect with state-of-the-art audiological and intervention services to make that road a little easier.

References

American Academy of Audiology. (2003). Pediatric Amplification Protocol. Retrieved March 5, 2007, from www.audiology.org/publications/documents/positions/PedRehab/

American Speech-Language-Hearing Association. (2004). Guidelines for Audiological assessment of children from Birth to 5 years of Age. Retrieved March 5, 2007, from www.asha.org/NR/rdonlyres/0BB7C840-27D2-4DC6-861B-1709ADD78BAF/0/v2GLAudAssessChild.

American Speech-Language-Hearing Association, (2006). Roles, knowledge, and skills: Audiologists providing clinical services to infants and young children birth to 5 years of age. Retrieved March 5, 2007, from www.asha.org/NR/rdonlyres/76C64B89-3A20-41F1-BEAC-C4A98F00905C/0/v2KS_Birth5.pdf

Baker-Hawkins, S., & Easterbrooks, S. (1994). Deaf and hard of hearing students; Educational service delivery guidelines. Alexandria: National Association of State Directors of Special Education.

Beauchaine, K.L. (2002). An amplification protocol for infants. In R.C. Seewald & J.S. Gravel (eds.), A sound foundation through early amplification 2001: proceedings of an international conference (pp. 105-112). Stäfa, Switzerland: Phonak AG.

Gallaudet University Center for Assessment and Demographic Study. (1998). Thirty years of the annual survey of deaf and hard of hearing children and youth: A glance over the decades. American Annnals of the Deaf, 142(2), 72-76.

Jerger, J.F., & Hayes, D. (1976). The cross-check principle in pediatric audiometry. Archives of Otolaryngology, 102, 614-620.

Joint Committee on Infant Hearing. (2000). JCIH year 2000 position statement: Principles and guidelines for early hearing detection and intervention programs. American Journal of Audiology, 9, 9-29.

Moeller,M.P., White,K., & Shisler,L. (2006) Primary care physician's knowledge, attitudes, and practices related to newborn hearing screening. Pediatrics, 118, 1257-1370.

Moeller, M.P. (2000). Early intervention and language development in children who are deaf and hard of hearing. Pediatrics,106(3), e43. Retrieved March 5, 2007, from pediatrics.aappublications.org/cgi/content/full/106/3/e43

My Baby's Hearing. (n.d.). Glossary. Retrieved March 5, 2007, from www.babyhearing.org/HearingAmplification/Glossary/index.asp

National Center for Hearing Assessment and Management. (2006). Data Management. Retrieved March 5, 2007, from www.infanthearing.org/datamanagement/index.html

National Center for Hearing Assessment and Management. EHDI/UNHS Web Sites & Guidelines. Retrieved March 3, 2007, from www.infanthearing.org/stateguidelines/index.html

National Center for Hearing Assessment and Management. (n.d.). Infant Hearing Guide. Retrieved March 5, 2007, from www.infanthearing.org/slideshow/ihg/index.html

National Center for Hearing Assessment and Management. (2006). State UNHS StatisticsM. Retrieved March 3, 2007, from www.infanthearing.org/status/unhsstate.html

SKI-HI curriculum Vol 1, (2004). SKI-HI Curriculum Two-volume state-of-the-art family-centered programming for infants and young children with hearing loss. Page 20 Available at: www.skihi.org/Research.html

Texas Connect. (n.d.). Terms and Definitions. Retrieved March 5, 2007, from www.callier.utdallas.edu/txcterms.html

The Individuals with Disabilities Education Act Amendments of 1997, Pub. L. No. 105-17, § 631-645, 111 Stat. 106 (1997).

The Individuals with Disabilities Education Improvement Act of 2004, Pub. L. No. 108-446, § 631-644, 118 Stat. 2744 (2004).

Turner, R. G. (2003). Double checking the cross-check principle. Journal of the American Academy of Audiology, 14(5), 269-277.

University of Nebraska Medical Center, (2007). Ethics Glossary. Retrieved March 3, 2007, from www.unmc.edu/ethics/words.html#

Yoshinaga-Itano,C., Sedey, A., Coulter,D.K. & Mehl,A.L., (1998). Language of early and later identified children with hearing loss. Pediatrics, 102, 1161-1171.

APPENDIX A


Web Resources to help parents/professionals interpret acronyms

Listen-Up

CDC: Early Hearing Detection and Intervention Program

VA-SOTAC Resource Guide ACRONYMS


Web Resources to help parents/professionals understand hearing loss in infants

American Speech-Language and Hearing Association

ASHA infant hearing website

Boys Town National Research Hospital "My Baby's Hearing"

Center for Disease Control: Early Hearing Detection and Intervention

Hands & Voices

Infant Hearing guide

Joint Committee for Infant Hearing

Laurent Clerc, National Deaf Education Center: Cochlear Implants, Gallaudet University

Listen Foundation

Marion Downs National Center

National Center for Hearing Assessment and Management www.infanthearing.org

Texas Connect


Materials available for Physicians

Physician Education Materials

AAP Guidelines Flow Chart

AAP Guidelines Medical Record

Sound Beginnings video

AAP teleconferences

Medical Home Fact Sheet

OAE/ABR Fact Sheet

American Academy of Pediatrics