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by Amy Torres
Hard as it may be to believe, less than two decades ago, not one state in the U.S. had legislation on the books which mandated early hearing loss detection in children. Until the early 1990s, only about three percent of all newborns were screened for a hearing loss at birth and a child with hearing loss would typically have not been identified as such until age two-and-a-half to three years. And by that time, say experts, the negative consequences of undetected hearing loss on a child's development are severe. Delays in speech, language and cognitive abilities are evident, while social and educational setbacks can be catastrophic and irreparable.
In 1990, Hawaii passed legislation which established a program of early hearing impairment screening, identification and follow-up in children from birth to 36 months. Fortunately, it was an idea that caught fire. Ten years later, 32 other states had also passed newborn hearing screening legislation, due in large part to the position statement published by the American Academy of Pediatrics in February 1999 which detailed the feasibility and benefits of implementing large-scale universal newborn hearing screening programs. Today, all 50 states, the District of Columbia, Puerto Rico and Guam have early hearing detection intervention (EHDI) programs in place, with updates and improvements to earlier legislation occurring frequently.
For example, this past April, the governor of Maine approved legislation that improves follow-up care for children with suspected or confirmed hearing loss and mandates that a referral appointment must be scheduled by the time the child is discharged from the hospital. In Tennessee, the governor approved legislation mandating hearing screenings and follow-up care for all newborns. Dubbed "Claire's Law" in honor of a child whose hearing loss went undetected until she was five months old, the law requires screening of every newborn infant prior to discharge from the hospital.
At the federal level, EHDI advocates scored a major victory this year when the U.S. House of Representatives voted in April to reauthorize H.R. 1198, the Early Hearing Detection and Intervention Act of 2008. Co-sponsored by Rep. Lois Capps (D-CA) and Rep. Jim Walsh (R-NY), the bill was touted by the American Academy of Audiology as "a big step toward the reauthorization of the Early Hearing Detection and Intervention Act," according to Academy President Alison Grimes, Au.D. Although yet to be voted on in the Senate, the passage of H.R. 1198 is a major coup for federal health agencies, which have struggled with children "falling through the cracks" when gaps occur between the hearing screening and the actual provision of services. A shortage of trained health professionals is partly to blame for the lack of adequate follow-up, and H.R. 1198 addresses this issue as well.
The H.R. 1198 legislation provides the following:
- Amends the Public Health Service Act to expand the definition of "early intervention" services to include young children in addition to infants and newborns, and to include diagnostic services among services provided.
- Requires the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to assist in the recruitment, retention, education and training of qualified personnel and healthcare providers.
- Provides new authority to: 1) develop efficient models to ensure that newborns, infants and young children who fail an initial screening are not lost to follow-up by a qualified healthcare provider, and 2) ensure that an adequate supply of qualified personnel is available to meet the screening, evaluation and early intervention needs of children.
- Requires the director of the National Institutes of Health, acting through the director of the National Institute on Deafness and Other Communication Disorders, to establish a postdoctoral fellowship program to promote research and development in the area of early hearing detection and intervention.
Today, according to Karl White, Ph.D., director of the National Center for Hearing Assessment and Management (NCHAM), 95 percent of the more than four million infants born in the U.S. each year are screened within one month of birth, a far cry from the three percent screening rate 20 years ago. But with all of this legislation in place, why is the screening rate not 100 percent? For one thing, a child can be exempted from hearing screening in 13 states if the parents object to the testing on religious grounds. Additionally, not all statutes require the screening of all babies; some statutes set the standard as low as 85 percent of all newborns. Another confusing element is that not all hospitals are part of their state's EHDI system and therefore do not have to report data related to newborn hearing screening.
EHDI efforts have come a long way in less than two decades, but clearly there are still gaps in the process and problems to be overcome. States have taken a variety of approaches to the issue of newborn hearing screening and it is fair to say that the legislation out there right now is all over the proverbial board. The good news is, screening programs are usually cost-effective and only amount to only about $8-$50 per baby – an ounce of prevention to save what NCHAM estimates to be $400,000 in special education costs by the time a child who falls through the cracks graduates from high school. It's a simple equation, a no-brainer to which the early hearing detection and intervention advocates are hoping the correct answer may some day be: 100 percent.
LINKS:
American Speech-Language-Hearing Association: Status of State Early Hearing Detection and Intervention (EHDI) Laws
http://www.asha.org/about/legislation-advocacy/state/bill_status.htm
National Center for Hearing Assessment and Management (NCHAM):
http://www.infanthearing.org/
Centers for Disease Control (CDC) EHDI Program:
http://www.cdc.gov/ncbddd/ehdi/default.htm
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