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Children With Hearing Loss Often Don't Receive Needed Care, National Data Show

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Former Surgeon General Dr. C. Everett Koop Joins Pediatrics and Education Experts to Discuss How to Close Remaining Gaps

Washington, D.C., May 9, 2007 - Hearing loss is the most common birth defect, yet one-third of babies who fail their newborn hearing screening do not receive a confirmed diagnosis, and many do not receive follow-up care, according to national data released today by the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) and the National Center for Hearing Assessment and Management (NCHAM). These gaps can hinder children's language development.

"The options for children with hearing loss are much greater now than ever before, but we need to do better at making the options available to them," said former Surgeon General Dr. C. Everett Koop, who joined experts from the U.S. Department of Education and American Academy of Pediatrics at a panel discussion today about potential solutions. "Children with hearing loss can achieve academic success on par with their hearing peers, but they need access to early diagnosis and intervention and the help of advanced hearing technologies and speech and language training."

Data Show Gaps Remain, Despite Progress

The national Early Hearing Detection and Intervention (EHDI) data revealed some improvement since the last time national data were collected, though gaps in care still remain. In particular, state EHDI program coordinators report that:

  • 34 percent of babies who failed their newborn hearing screening did not receive a confirmation of a diagnosis after their initial screening - down from nearly 50 percent between 1999 and 2004.

  • Nearly a quarter (23 percent) of babies who did receive a confirmed diagnosis still failed to be referred to early intervention services that could help them.
"Since the first federal EHDI legislation was passed in 1999, states have placed increased emphasis on better coordination with existing early childhood programs, greater involvement from primary health care providers and more resources devoted to educating families about the importance of identifying hearing loss as early as possible," said Karl White, Ph.D., director of NHCAM. "Reauthorization of EHDI legislation currently under consideration by both the House and Senate will help to ensure that positive trend will continue."

The data are collected periodically by NCHAM to assess America's progress in providing screening and early intervention services for children with hearing loss. Ten years ago, only seven states had laws mandating newborn hearing screenings. Today, 40 states and the District of Columbia have EHDI laws, and more than 95 percent of babies are now screened for hearing loss at birth. The average age hearing loss is identified has been reduced from 30 to three months.

"We have made tremendous progress, yet most parents still are not prepared for hearing loss or aware of the options for addressing it," said Karen Youdelman, Ed.D., president of AG Bell. "There is no time to waste. We have a responsibility to make sure families know that children begin to learn language by hearing it first and that the first few months in a baby's life are the most important."

Education and New Legislation Can Help

AG Bell is working through its chapters to raise awareness among pediatricians, hospital staff and parents about how to ensure early diagnosis and intervention for children who are deaf or hard of hearing. The U.S. Department of Health and Human Services urges parents to have their baby's hearing screened before they are 1 month old and to complete diagnostics and enrollment in early intervention as soon as possible thereafter; in most cases, this should happen within a few weeks. Because as many as 30 percent of children with hearing loss are identified after they passed their newborn screening, AG Bell also emphasizes ongoing attention to the signs of hearing loss.

In February, Reps. Lois Capps (CA) and James T. Walsh (NY) and 23 others introduced the Early Hearing Detection and Intervention Act of 2007 (H.R. 1198) to improve the early detection, diagnosis and treatment of hearing loss in young children. The legislation would reauthorize the EHDI grant program, which funds statewide programs that screen newborns for hearing loss before they leave the hospital. The legislation also seeks to expand states' abilities to enroll identified babies in early intervention programs, offer coordinated support to families of young children with hearing loss and address the shortage of trained health providers. A companion bill (S. 1069) was introduced in the Senate by Sens. Olympia Snowe (ME) and Tom Harkin (IA) in March.

Role of the Medical Home

"The American Academy of Pediatrics is proud to do its part to raise awareness of childhood hearing loss," said Frank Aiello, M.D., FAAP, member of the American Academy of Pediatrics Task Force on Improving Early Hearing Detection and Intervention. "We are committed to working with other organizations to provide a medical home to every child with hearing loss and ensure that families understand the full range of language and educational opportunities available to their children."

About the Alexander Graham Bell Association for the Deaf and Hard of Hearing

The Alexander Graham Bell Association for the Deaf and Hard of Hearing helps families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention. Through advocacy, education, research and financial aid, AG Bell helps to ensure that every child with hearing loss has the opportunity to learn to listen and talk. www.agbell.org

About the National Center for Hearing Assessment and Management

In 1995, the National Center for Hearing Assessment and Management (NCHAM) was established at Utah State University to assist state-based EHDI programs to ensure that all infants are screened for hearing loss at birth, and that infants who refer from screening receive timely and appropriate diagnostic and intervention services. www.infanthearing.org

AG Bell and NCHAM thank Advanced Bionics (www.bionicear.com) and the Bionic Ear Association for demonstrating their dedication to helping individuals and families with hearing loss and the professionals who serve them by supporting this initiative.

Taken from www.agbell.org/DesktopDefault.aspx?p=2007_National_EHDI_Panel
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