Achieving Optimal Outcomes From EHDI It was once difficult for infants and young children who are deaf or have hearing loss to attain and sustain language and academic success commensurate with those of typically hearing children. Advances in infant screening technology and the ability to implement newborn hearing screening programs throughout the United States have ... Features
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Features  |   September 01, 2011
Achieving Optimal Outcomes From EHDI
Author Notes
  • Christine Yoshinaga-Itano, PhD, CCC-A, is a professor in the Department of Speech, Language, and Hearing Science at the University of Colorado, Boulder. Her research focuses on the language, speech, and social-emotional development of infants and children with hearing loss. She is a member of two special interest groups, Hearing and Hearing Disorders in Children (9), and Communication Disorders and Sciences in Culturally and Linguistically Diverse Populations (14). Contact her at christie.yoshi@colorado.edu.
    Christine Yoshinaga-Itano, PhD, CCC-A, is a professor in the Department of Speech, Language, and Hearing Science at the University of Colorado, Boulder. Her research focuses on the language, speech, and social-emotional development of infants and children with hearing loss. She is a member of two special interest groups, Hearing and Hearing Disorders in Children (9), and Communication Disorders and Sciences in Culturally and Linguistically Diverse Populations (14). Contact her at christie.yoshi@colorado.edu.×
Article Information
Hearing Disorders / Special Populations / Early Identification & Intervention / Features
Features   |   September 01, 2011
Achieving Optimal Outcomes From EHDI
The ASHA Leader, September 2011, Vol. 16, 14-17. doi:10.1044/leader.FTR2.16112011.14
The ASHA Leader, September 2011, Vol. 16, 14-17. doi:10.1044/leader.FTR2.16112011.14
It was once difficult for infants and young children who are deaf or have hearing loss to attain and sustain language and academic success commensurate with those of typically hearing children. Advances in infant screening technology and the ability to implement newborn hearing screening programs throughout the United States have achieved a 95% screening rate for newborns in the United States. Despite these advances, however, there are still challenges. Many states/territories do not document newborn hearing screening outcomes. Without such documentation, it is not known if the Early Hearing Detection and Intervention (EHDI) system is accomplishing the goal of providing successful early intervention services for children with hearing loss.
Appropriate early intervention for all infants with confirmed permanent hearing loss should begin before 6 months of age [Joint Committee on Infant Hearing (JCIH), 2007]. JCIH is working on a new document on early intervention—Year 2012 Position Statement: Principles and Guidelines for Early Development After Confirmation That a Child Is Deaf or Hard of Hearing—with a targeted publication in 2012. Earlier identification and management of permanent childhood hearing loss is known to result in improved developmental outcomes (Moeller, 2000; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).
Success in this mission requires meticulous attention to many of the processes—including data management, reporting, and communication with families—within the EHDI system. The following 15 goals are central to the EHDI mission.
Ensure a quality data management system that is capable of tracking infants from screening to outcomes. Some state/territory systems lack a centralized data management system capable of tracking infants who are confirmed as deaf or hard of hearing. Therefore, oversight agencies are unable to track outcomes or determine whether the infant and family actually received services, whether the services were timely (immediate), and whether the services were provided by professionals with the requisite skills to facilitate optimal outcomes for the infant and family. Even when a relatively comprehensive data management system is in place to collect information about screening and diagnosis, most management systems are not designed to collect information after the infant is diagnosed and referred for intervention.
Reduce the probability of missing children who are deaf or hard of hearing by avoiding fail/refer rates that are too low. When refer rates drop below 1% at hospital discharge, the risk of missing a child with hearing loss increases. Screening programs are often designed to be “ultra-efficient” with extremely low rates of referral, but the lower the rate of referral, the more likely that a child with true hearing loss will be missed. Screeners should be trained on the screening equipment, infant preparation, and procedures. Overscreening during any given session can result in passing a baby who indeed has hearing loss. A well-meaning screener who repeats the screen again and again to “try for a pass” may increase the odds of a false pass. Standards for screening equipment must be established to ensure mild hearing losses are being detected.
Avoid fail/refer rates that are too high. Refer rates that are too high place an added burden on the system for follow-up and tracking. When screening is more targeted and fewer babies are referred, it is more likely that identified babies will be followed more closely. Additionally, a situation in which the vast majority of babies who fail screening are found to have normal hearing may lead to lack of concern from physicians and families regarding the relevance of the screen and the need to follow up.
Facilitate processes that increase the probability that families will follow up. To accomplish this goal, there must be a delicate balance in the concern communicated to the parents—sufficient concern to trigger return for follow-up but not so much concern that they are immobilized. Parents need to have sufficient trust in the audiologist or other personnel so that they believe the results of the screening (the screener’s self-doubt or comments about equipment failure may affect that trust), encouragement from the general practice physician or pediatrician that audiologic follow-up is required, and an easy system for follow-up (e.g., appointments are made instantly and are available within days of the referral). The cost of the follow-up appointments—including the need for the parents to take off time from work—as well as geographic considerations (e.g., distance from the child’s home, transportation to the facility) can reduce the likelihood that a family will return for follow-up. Parents should receive family-friendly education materials regarding the importance of following up with the diagnostic evaluation.
Audiologists can increase a family’s chances for a return visit by soliciting the support of the managing care physician to encourage the family to return for audiologic follow-up, and ensuring an appointment will be available within a few days. Having the family leave the screening with a scheduled appointment is one of the best ways to increase follow-up. Assure parents that the audiologists at the available facilities have the training and equipment to assess newborn hearing. If families do not return in a timely manner for follow-up, infants who are deaf or hard of hearing may become “late identified,” despite the opportunity that EHDI provides for early identification and intervention.
Reduce the age of identification for children with acquired or progressive hearing loss. Develop a counseling protocol for parents whose children have passed the screen, emphasizing that hearing screening provides important information regarding their child’s hearing at the time of the screening, but that hearing loss can develop at a later date. Parents should be encouraged to ask for further testing if, in the future, they suspect a change in the child’s hearing or observe delays in the child’s language development.
Report follow-up immediately to state EHDI databases. A significant loss to follow-up is a “loss to documentation” for children in all categories: those who “fail” the initial screening and return and “pass” the second screen, those who “fail” the initial screen and “pass” a follow-up screen, and those who “fail” the initial and second screen and are identified with hearing loss. Audiologists providing audiology services to infants and young children need to be aware of ASHA policy documents and of their ethical responsibility to report results of all pediatric audiologic evaluations that are a follow-up from universal newborn hearing screening to the appropriate state EHDI program [PDF].
Increase the rate of immediate referral to early intervention and ensure immediate early intervention services. Audiologists may, in fact, be referring children with identified hearing loss to early development services within 48 hours of hearing loss confirmation, but most data management systems seem to lack sufficient documentation of referral. This documentation void is likely due to audiologists who either fail to report the data or who report the confirmation of hearing loss prior to referral and then fail to update the data. Thorough and accurate evaluation of state screening programs—including the timeliness of identification and follow-up—requires good data from audiologists.
Ensure that early development services are provided by specialists in early childhood deafness/hearing loss. Each state/territory has developed a unique service delivery system. The most successful systems—those with the highest rate of ensuring optimal child and family outcomes—have a state-wide system of early development/intervention providers who have specialized knowledge and skills in early childhood deafness and hearing loss. Some systems refer children to deaf educators, but these educators may have no specialized training in early childhood and family-centered services. Other programs refer children to a system of early childhood special educators who are knowledgeable about developmentally appropriate practices and family-centered services, but may not be knowledgeable about deafness and hearing loss. Since 1992, in the United States, only programs with a specialized system of providers who have skills and knowledge in early childhood deafness and hearing loss have been able to show optimal outcomes for early-identified children (Moeller, 2000; Yoshinaga-Itano et al., 1998).
Ensure timely contact after referral by knowledgeable early intervention providers. Speech and hearing service providers should monitor how quickly parents are contacted by early development services after a referral is made. Audiologists should continue to ask parents at follow-up audiologic appointments whether the parents have been contacted by early development services; if necessary, the audiologist should re-contact officials to emphasize urgency and encourage timeliness. By law, the Individual Family Service Plan must be completed within 45 days, and immediate initial contact with families will ensure this goal is achieved.
Increase reporting of early intervention referrals of each child confirmed as deaf or hard of hearing to the EHDI database. When an infant is confirmed as deaf or hard of hearing, a delay in referral to appropriate early development services (provided by specialists in early childhood deafness/hearing loss) could squander the opportunity to provide early intervention services immediately. A longer time between confirmation and onset of early development services can negatively affect the family’s emotional adjustment to the confirmation that the child is deaf or hard of hearing, creating significantly greater stress. Increased parental stress can result in difficulties in bonding, as well as depression, anger, and guilt. Increased stress also may impede the family’s ability to focus on strategies that facilitate the child’s communication development. Success of amplification, the family’s effort to ensure that the child wears the amplification, and success of early communication strategies depend on the emotional status of the family and their readiness to participate fully in early development services. The longer the time between referral to and contact from early development services, the higher the likelihood that the family’s stress, anxiety, and emotional distress will increase.
Establish criteria for knowledge and skills of early intervention staff who first contact families of infants or children who are deaf or hard of hearing. The person from the early intervention program who makes first contact must be knowledgeable not only about deafness and hearing loss, but also about assisting the family’s emotional adaptation to the diagnosis. An individual who lacks these skills and knowledge may be unable to provide information that responds to the family’s fears and concerns about current and future issues, and therefore may not reduce the family’s stress. Counseling skills alone are not enough; the individual must also, for example, understand the technical information about the cause, type, degree, and impact of hearing loss; amplification; and communication strategies.
An early development provider who cannot answer parents’ questions, re-explain information, and provide guidance and additional information to the family can exacerbate stress and anxiety. In an effort to provide unbiased services, particularly in the area of communication methods, services frequently are provided by professionals who are generalists rather than those who have expertise in a given area. Whenever possible, families should be linked with providers who can help them achieve their communication goals.
Early development systems should strive to provide families with the most knowledgeable and skilled providers at the onset of the process. If the system works well, the child may be able to enter into the regular educational system by kindergarten at age 5, perhaps preventing the need for years of intensive special education direct services. Instead, the child may require services focused on accommodation.
Avoid providing information the family may perceive as biased, and reduce pressure on families to make immediate decisions. Reducing pressure on families is an important goal, given that early diagnosis can provoke or exacerbate emotional stress. With EHDI programs in place, parents and families have time to educate themselves and make informed decisions. The sense of decision-making urgency was much more heightened before EHDI, when children often were not identified until after their second birthdays. Unfortunately, many families report that to receive any intervention services, they must decide immediately on an approach to intervention (auditory-oral, sign language, simultaneous communication). This pressure raises their stress level when they already are feeling a sense of urgency to get started.
Ensure that families have peer support available as early as possible. Families report that support from others who have been in the same situation is one of the most helpful aids in their adjustment to the hearing loss diagnosis. Families can ask questions they might be afraid to ask professionals and may get a greater diversity of opinions and experiences. Families help one another with important topics that may not be covered in typical intervention services—such as issues with siblings and other extended family members—or what concerns to anticipate as their child grows older.
Ensure that families have an opportunity to interact with individuals and professionals who are deaf or hard of hearing. Many families indicate that meeting with individuals and professionals who are deaf or hard of hearing helped the most in their emotional adaptation to the hearing loss diagnosis. Most parents of children newly identified with hearing loss have never met or interacted with a person who is deaf or hard of hearing. Optimally, the family also will interact with professionals who are deaf or hard of hearing, broadening the family’s perspectives on deafness and enabling them to envision many different opportunities for their child.
Ensure that the infant who is deaf or hard of hearing has audibility across the speech frequencies needed to learn spoken language. Ongoing studies report a significant number of early-identified children lack amplification that offers audibility across the speech spectrum. Use of pediatric prescriptive formulas such as DSL and NAL-NL1 to fit hearing aids is extremely important to ensure audibility. Hearing aids need to be adjusted when pure-tone thresholds are obtained. Adjustments before that time—from birth through about 6 to 7 months—can be made based on feedback from early intervention providers and parents using the Ling 6 sound test. Families can be taught to stimulate infants with the six sounds by introducing a single sound each day when the child’s hearing aids are turned on in the morning and observing physical responses such as eye blinks, smiles, eye widening, or eye localization to the sound (Yoshinaga-Itano & Sedey, 2000). Ensuring audibility as soon as possible is vital if optimal spoken language development is to be achieved. Audibility sufficient for discrimination of speech sounds also can be obtained through visual reinforcement infant speech discrimination procedures for children as young as 7 to 9 months.
Audiologists have demonstrated great dedication for ensuring the highest quality of services to infants and their families since EHDI programs began in the early 1990s. Program quality assurance should be monitored through data management systems. Many states have demonstrated successfully that this can be accomplished and with close adherence to these 15 goals, audiologists and early intervention providers can help to ensure that the EHDI mission results in positive outcomes for infants with hearing loss.
Sources
Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention. Available from www.asha.org/policy.
Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention. Available from www.asha.org/policy.×
Moeller, M. P.(2000). Early intervention and language development in children who are deaf and hard of hearing. Pediatrics, 106, e43.
Moeller, M. P.(2000). Early intervention and language development in children who are deaf and hard of hearing. Pediatrics, 106, e43.×
Yoshinaga-Itano, C., & Sedey, A. L. (2000). Early speech development in children who are deaf or hard of hearing: Interrelationships with language and hearing. The Volta Review, 100, 181–211.
Yoshinaga-Itano, C., & Sedey, A. L. (2000). Early speech development in children who are deaf or hard of hearing: Interrelationships with language and hearing. The Volta Review, 100, 181–211.×
Yoshinaga-Itano, C., Sedey, A. L., Coulter, D. K., & Mehl, A. L. (1998). The language of early- and later-identified children with hearing loss. Pediatrics, 102, 1161–1171.
Yoshinaga-Itano, C., Sedey, A. L., Coulter, D. K., & Mehl, A. L. (1998). The language of early- and later-identified children with hearing loss. Pediatrics, 102, 1161–1171.×
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September 2011
Volume 16, Issue 11