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Early Hearing Detection and Intervention (EHDI) ~ Challenges and Opportunities ~. Why is early identification of hearing loss so important?. Hearing loss occurs more frequently than any other birth disorder. Incidence per 10,000 of Congenital Disorders/Diseases.
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Early Hearing Detection and Intervention (EHDI)~ Challenges and Opportunities ~
Why is early identification of hearing loss so important? • Hearing loss occurs more frequently than any other birth disorder.
Why is early identification of hearing loss so important? • Hearing occurs more frequently than any other birth disorder. • Undetected hearing loss has serious, negative consequences.
Reading Comprehension Scores of Hearing and Deaf Students Grade Equivalents Age in Years Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.
Why is early identification of hearing loss so important? • Hearing occurs more frequently than any other birth disorder. • Undetected hearing loss has serious negative consequences. • There are dramatic benefits associated with early identification of hearing loss.
Boys Town National Research Hospital Study of Earlier vs. Later 129 deaf and hard-of-hearing children assessed 2x each year. Assessments done by trained diagnostician as normal part of early intervention program. 6 Identified <6 mos (n = 25) 5 Identified >6 mos (n = 104) 4 3 Language Age (yrs) 2 1 0 0.8 1.2 1.8 2.2 2.8 3.2 3.8 4.2 4.8 Age (yrs) Moeller, M.P. (1997). Personal communication , moeller@boystown.org
NIH Consensus Panel Early Identification of Hearing Impairment in Infants and Young Children March, 1993 The consensus panel concluded thatall infants should be screened for hearing Impairment. . .this will be accomplished most efficiently by screening prior to discharge from the well-baby nursery. Infants who fail . . .should have a comprehensive hearing evaluation no later than 6 months of age.
EHDI Program Goals ▣All infants will be screened forhearing loss at birth or before 1 month of age. ▣ Infants not passing the screening will receive appropriate audiologic and medical evaluation before 3 months of age. ▣Infants and their parents will be linked with a medical home and culturally competent family support. ▣ All infants with confirmed permanent hearing loss will begin receiving early intervention services before 6 months of age. ▣Statewide data and tracking systems will be established to monitor the quality of screening services and to help ensure that children and families receive the follow-up services they need.
EHDI Program Components ▣ Universal Newborn Hearing Screening ▣ Medical Home ▣ Diagnostic Audiology ▣ Early Intervention ▣ Family Support ▣ Tracking and Data Management
▣Universal Newborn Hearing Screening – Technology Technological advances have made it possible to conduct highly reliable physiological hearing screening of children as young as a few hours old. • AABR (Automated Auditory Brainstem Response) • OAE (Otoacoustic Emissions)
▣Universal Newborn Hearing Screening Percentage of Newborns Screened for Hearing Prior to Discharge
▣Universal Newborn Hearing Screening 37 States Have Legislative Mandates Related to Universal Newborn Hearing Screening States with mandates No mandate, but statewide programs No mandate
▣Universal Newborn Hearing Screening - Legislation
▣Universal Newborn Hearing Screening +There are hundreds of excellent universal newborn hearing screening programs operating nationwide. +With almost 90% of all babies being screened prior to discharge, newborn hearing screening is becoming the accepted standard of care. - Many programs are still struggling with high refer rates and poor follow-up.
▣Universal Newborn Hearing Screening 1999 2000 2001(6 mos.) (n=43,547) (n=46,771) (n=23,307) Inpatient Pass Rates (state average) 85.2% 85.5% 87.5% 10 most effective hospitals 92.8% 93.4% 93.7% 10 least effective hospitals 70.7% 63.4% 74.4% Outpatient completion (state average) 70.1% 67.1% 68.3% 10 most effective hospitals 94.5% 95.9% 94.7% 10 least effective hospitals 45.3% 52.9% 58.08% Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110* Evaluations (state average) 37.3% 43.4% 40% *based ononly 3 months of available data
▣ Medical Home A primary care physician provides care which is: • Accessible • Family-centered • Comprehensive • Continuous • Coordinated • Compassionate • Culturally effective
Birthing Hospital Audiology Parent Groups Mental Health PrimaryProvider Child/Family ENT 3rd Party Payers Deaf Community Early Intervention Programs Genetics Services for Hearing Loss
▣Medical Home – Primary Care Provider Education
▣Medical Home – Strategies for Improving Follow-up
▣Diagnostic Audiology + Equipment and techniques for diagnosis of hearing loss in infants continues to improve + States are developing guidelines to identify audiologists who can appropriately serve infants and young children
▣Diagnostic Audiology -Severe shortages in experienced pediatric audiologists delays confirmation of hearing loss - State EHDI Coordinators estimate only 56.1% receive diagnostic evaluations by 3 months of age
▣Early Intervention + Some families are experiencing the benefits of early identification and intervention
▣Early Intervention - Only 53% of infants with hearing loss are enrolled in EI programs before 6 months of age - Only 31% of states have adequate range of choices for EI programs - Current system designed to serve infants with bilateral severe/profound losses---but, majority of those identified have mild, moderate, and unilateral losses
▣ Family Support Common emotions of families upon learning that their child has a hearing loss: • (grief) Reactions to unexpected diagnosis • (pressure) Urgency of communication decisions
▣ Family Support Common emotions of families upon learning that their child has a hearing loss: • (confusion) Search for experienced professionals • (isolation) Availability of services and support
▣ EHDI Data Management, Tracking and Follow-up +75% of states receive screening data from some hospitals -- information submitted for 62% of births in 2001 - 33% of submissions have no identifying data --making follow-up by state EHDI staff impossible - Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, Heelstick, EI, Immunizations)