Advocate for Reauthorization of the Newborn Hearing Screening/Early Intervention Law
On March 10, Congressional Members Guthrie (R-KY) and Capps (D-CA) introduced a bi-partisan bill that proposes to reauthorize the existing Early Hearing Detection and Intervention (EHDI) Act, which is due to expire in 2015. This is the bill that provides Federal funds to states for newborn hearing screening and also supports state early intervention services. Many ACI Alliance members have observed that too often parents do not receive the information that they need to make early and informed decisions for their deaf child. Working with a coalition of groups, American Cochlear Implant Alliance urged for language in the bill highlighting the need for parents to receive comprehensive, evidence-based information about the range of technology and language development options available to a child with hearing loss. The legislative language proposed by Congressional Members Guthrie and Capps includes specific mention of cochlear implants as a technology option. This is an important and timely law for children born deaf or for those who become deafened by age 3.
We are urging our ACI Alliance members to get involved by asking your Congressional Members to sign on as Co-Sponsors of the bill. This is not difficult to do:
Dear Rep. Kuster - my name is Barbara Mellert. I am the mother of two wonderful young men. Both my sons - Thom and Sam - were born deaf but were not diagnosed until they were older because there was no newborn hearing screening back in 1992 and 1994 when they were born. I served on the NH task force that ultimately was successful implementing newborn hearing screening (abbreviated EHDI). Before newborn hearing screening began, most children with hearing loss weren't identified until they were 2 or 3 years old, which resulted in delays in speech, language and communication. My own Thom was one such child. Thom was diagnosed when he was 3-1/2 and fitted with hearing aids at that time. Sam, thanks to being the "younger brother" was diagnosed when he was 15 months old. The differences between the two boys were marked, I think in large part due to their age at diagnosis. It was so much easier for Sam and Sam was out of special education when he was in first grade.
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Contrast with Thom who no longer required special education services when he was a sophomore in high school.
Before legislation was approved by Congress, less than 44% of newborns were screened for hearing loss. Currently, about 96% of all newborns are screened which allows thousands of babies and their families to reap the benefits of early identification. Not only is this better for our children, but it saves millions of dollars each year in reduced special education costs.
RR 1344, the Early Hearing Detection and Intervention Act of 2015, builds upon previous EHDI authorizations to allow vital screening and monitoring to continue. Unfortunately, while most babies are screened and those with hearing loss are detected, many infants who fail their newborn screening tests don't receive timely follow-up or families fail altogether to follow through with appropriate services. I know families in our district where this is the case.
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Loss to follow-up is a critical problem and this bill's increased focus will ensure that those who were identified at birth with hearing loss receive appropriate services that fit with their family's needs and desires.
I urge you to cosponsor HR 1344, the Early Hearing Detection and Intervention Act of 2015. For more information or to cosponsor, please contact Megan Jackson with Congressman Guthrie's office at x53501 or by email at Megan.Jackson@mail.house.gov. You can also also contact Devin McBrayer with Congresswoman Capps' office at x53601 or via email at Devin.McBrayer@mail.house.gov
Thanks so much for considering.