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by Dee Naquin Shafer
"I have always found it difficult to believe people are not interested in [helping] children with hearing loss," said former U.S. Surgeon General C. Everett Koop. "But at least the cost savings in reducing children’s need for special education should get attention."
In 1988, when Koop called for a significant increase in early hearing detection and intervention (EHDI), fewer than 3% of newborns received early screening. The current screening rate is 95% but should be higher, said Koop and other panelists at a May 9 press conference at the National Press Club in Washington, D.C., held to mark Better Hearing and Speech Month.
The Alexander Graham Bell Association for the Deaf and Hard of Hearing sponsored the event, calling attention to persistent gaps in EHDI. State program coordinators report that 34% of babies who failed newborn hearing screenings did not receive a confirmation of a diagnosis after initial screening. And nearly a quarter (23%) of babies who did receive a confirmed diagnosis still failed to be referred to early intervention services.
Koop noted that his 1988 challenge was called unrealistic—but finally happened. The new challenge is to ensure sufficient follow-up services.
Karl White, founding director of the National Center for Hearing Assessment and Management, praised improvements in EHDI, noting that the Head Start program also helps identify children with
hearing loss.
"There are 12,000 infants born each year with congenital hearing loss," White said. "We know if infants with hearing loss are identified early enough and provided services, they can develop normally and lead different lives than children [from 20 years ago]." At that time, adults who were deaf read, on average, at a third-grade level.
Forty states have EHDI laws and another five have voluntary screening. Moving the numbers up will take time, White added.
"It took a while to get people to wear bicycle helmets and to stop smoking. Those seem so common-sense now," he said.
"Medical Home" Needed
Frank Aiello, a developmental pediatrician for the High Risk Neonatal Follow-up Clinic of Children’s Hospital of the King’s Daughters (Norfolk, Virginia), spoke of the need for a "medical home" for children with hearing loss. The medical home model includes a primary health care professional who works in partnership with the family and patient to assure that all medical and non-medical needs are met. Aiello is a member of the American Academy of Pediatrics Task Force on EHDI and the Medical Home.
"Every child can succeed if we give them the tools they need," said John Hager, assistant secretary for the Office of Special Education and Rehabilitative Services at the U.S. Department of Education. Hager pointed to release of the regulations on Part C (infants and toddlers program, 0-2 years) of the Individuals with Disabilities Education Act as a positive step in the direction of success.
The final speaker, Stacy Allen, shared her personal passion about early intervention for hearing loss. Three of her four children, all under the age of 10, were diagnosed with congenital hearing loss. Thanks to early identification and cochlear implants before age 1, the three are fully mainstreamed in their local elementary school in Wake Forest, North Carolina, she said (see sidebar above).
Allen and her husband Anthony had no history of hearing loss on either side of their families, and found audiologists and other professionals to be invaluable as they navigated through the medical system, she said. In fact, her two sons passed newborn screening but later tests revealed their hearing losses.
"I encourage parents who suspect their children have hearing loss to take action—there is no time to waste, no shortcuts," Allen added. "Every family should have the access and direction for early intervention."
Dee Naquin Shafer, an assistant managing editor for The ASHA Leader, can be e-mailed at dshafer@asha.org.
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