EHDI-PALS: Linking Families to Services
By Anne Oyler, Au.D., CCC-A
The Joint Committee on Infant Hearing (JCIH) recommends that infants with hearing loss be identified through universal newborn hearing screening (UNHS) by 1 month of age, diagnosed by 3 months of age, and that appropriate intervention services be initiated by 6 months of age (JCIH, 2007). Research demonstrates that meeting these benchmarks—known as 1-3-6 — greatly improves speech, language and communication outcomes for children who are deaf and hard of hearing (Yoshinaga-Itano & Apuzzo, 1998; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).
Universal Newborn Hearing Screening: How Far We’ve Come
Each year in the United States, state-based Early Hearing Detection and Intervention (EHDI) programs report newborn hearing screening data to the Centers for Disease Control and Prevention (CDC). In 2010, almost 98 percent of babies born in the United States and its territories were screened for hearing loss. This is a dramatic increase from the 46 percent of babies screened in 1999.
Unfortunately, tracking the follow-up of these infants from screening through diagnosis and into intervention has been problematic. In 2010, 39.4 percent of the babies referred from UNHS were unaccounted for either because of attrition or poor tracking and documentation. While this represents an improvement over the 64 percent calculated in 2005, continued attention is needed to ensure that babies identified through newborn hearing screening receive recommended diagnostic and intervention services as quickly as possible (CDC, 2012).
Loss to Follow-up: Still a Long Way off
In 2008, the American Speech-Language-Hearing Association (ASHA) published a document titled Loss to Follow-Up in Early Hearing Detection and Intervention. This technical report provided results of a systematic review of research in the area of loss to follow-up (LTF) (ASHA, 2008).
The systematic review highlighted some potential reasons for delayed follow-up after UNHS:
- Lack of parent education about hearing screening and hearing loss
- Barriers to information-sharing between screening programs, health care providers and families
- Funding issues for EHDI programs
- Poor reimbursement for audiology services
- Lack of/or reduced coverage for hearing aids, ear molds and cochlear implants
- Education, literacy level, socioeconomic status and age of the mother
- Proximity to resources—long travel time to obtain services
- Identifying professionals with expertise in pediatric audiology and intervention
To meet the JCIH goals of early and timely diagnosis and management of hearing loss, reduce LTF, and minimize communicative delays, families need to be connected to appropriate audiology and intervention services early and stay connected throughout transition periods leading up to school (ASHA, 2013). One issue leading to LTF is difficulty in identifying pediatric audiology facilities with the clinical expertise and equipment to meet the specific needs of infants and young children. This challenge creates delays in the diagnostic and intervention process, thus negatively affecting child outcomes.
In 2009, a task force composed of stakeholders, including pediatric audiologists representing the American Academy of Audiology (AAA), ASHA, CDC, Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA), Early Childhood Technical Assistance (ECTA) Center, Hands & Voices, Health Resources and Services Administration (HRSA), JCIH, National Center for Hearing Assessment and Management (NCHAM), and State Early Hearing Detection and Intervention (EHDI) Coordinators began meeting to develop the Early Hearing Detection and Intervention–Pediatric Audiology Links to Services (EHDI–PALS) website (EHDI-PALS, n.d.).
EHDI-PALS: Bridging the Gap
EHDI-PALS houses a pediatric facility directory and helpful family-friendly educational resources that were developed with input from parents of children with hearing loss. The directory is populated with audiology facilities that employ licensed audiologists and offer diagnostic, hearing aid and cochlear implant services for children under age 5.
A detailed survey that includes questions about audiology (hearing) services, languages available, payment options, appointment availability, and related onsite services is completed by each facility. EHDI–PALS employs a sophisticated algorithm (decision tree) that analyzes survey responses and then lists only those facilities that can provide specialized, age-appropriate services consistent with current best practice standards.
Parents are required to input their child’s date of birth, desired services (e.g., hearing test, hearing aids, cochlear implant) and zip code in order to receive a list of the audiology facilities in their geographic location that best meet their needs. The site allows a comparison of three facilities at a time in an easy-to-read table. Directions to facilities are provided in Google Maps.
EHDI-PALS is partnering with parent groups, physicians and EHDI coordinators to spread the word about the availability of its directory and resources. Since November 2012 the EHDI-PALS website has been viewed almost 75,000 times. Facility searches were conducted almost 4,000 times.
Questions to Ask
In addition to a number of well-vetted educational websites and organizations, EHDI–PALS features a resource called “Questions To Ask.” This resource includes questions to ask and the rationale for asking them, along with more in-depth “Learn More” information if the parent is interested. The main topic areas include the following questions to ask when:
- Scheduling an appointment for your child’s hearing test
- Your child has been tested and has hearing loss
- You need more support
- Scheduling a hearing aid appointment
- You are at the hearing aid appointment
- You are thinking about a cochlear implant for your child
- Intervention is needed and you are making decisions about communicating with your child
Successful outcomes for children with hearing loss can only be achieved if babies are diagnosed with hearing loss and linked to appropriate early intervention services in a timely manner. The EHDI–PALS directory is a comprehensive, user-friendly online tool designed to help guide and educate families and professionals searching for needed pediatric audiology services. To date over 850 facilities across the country and U.S. territories have enrolled.
EHDI–PALS has great potential for not only educating families about what to expect and ask as they access audiology services, but also for helping them identify appropriate audiology facilities, which will lead to timelier access to services and improved outcomes for their children with hearing loss.
American Speech-Language-Hearing Association (2008). Loss to follow-up in early hearing detection and intervention [Technical report]. Retrieved from www.asha.org/ policy/TR2008-00302.htm
American Speech-Language-Hearing Association (2013). Supplement to the JCIH 2007 position statement: principles and guidelines for early intervention following confirmation that a child is deaf or hard of hearing [Position statement]. Retrieved from www.asha.org/ policy/PS2013-00339
Centers for Disease Control and Prevention (2012). Identifying babies with hearing loss. Retrieved from www.cdc.gov/features/dsinfanthearingloss/index.html
Early Hearing Detection and Intervention–Pediatric Audiology Links to Services (n.d.). Retrieved from http://ehdipals.org/Default.aspx
Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention [Position statement]. Retrieved from www.asha.org/policy/PS2007-00281
Yoshinaga-Itano, C., & Apuzzo, M. L. (1998). Identification of hearing loss after 18 months of age is not early enough. American Annals of the Deaf, 143(5), 380–387.
Yoshinaga-Itano, C., Sedey, A. L., Coulter, B. A., & Mehl, A. L. (1998). Language of early and later-identified children with hearing loss. Pediatrics, 102(5), 1168–1171.
|Anne L. Oyler, Au.D., CCC-A, is an associate director of Audiology Professional Practices for the American Speech-Language-Hearing Association. Her primary interests include pediatric and educational audiology issues. Oyler’s earlier professional experience includes university clinic supervision, auditory research in the areas of speech perception and hearing aids, and consultation for an early hearing detection and intervention program.
Source: Volta Voices (2015), Volume 22, Issue 2
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