In 1988, when he was serving as the Surgeon General of the United States, Dr. C. Everett Koop brought the issue of universal newborn hearing screening to the attention of the nation when he declared:
“Deafness in infants is a serious concern because it interferes with the development of language – that which sets humans apart from all other living things … early intervention with hearing impaired children results in improved language development, increased academic success and increased lifetime earnings … [and] actually saves money since hearing impaired children who receive early help require less costly special education services later. … I am optimistic. I foresee a time in this country … when no child reaches his or her first birthday with an undetected hearing impairment.”
Dr. Koop’s enthusiasm for newborn hearing screening and his optimism that it could be successfully implemented was a little surprising given the fact that fewer than three percent of all newborns in the U.S. were screened for hearing loss at that time.
Solid progress toward achieving Koop’s vision was showcased at the 2006 National EHDI Conference held in Washington, D.C., February 2-3, 2006. At that meeting, the results of the most recent survey of state Early Hearing Detection and Intervention (EHDI) programs were announced by the National Center for Hearing Assessment and Management. With 93 percent of all newborns in the U.S. now being screened for hearing loss, the nation continues to progress toward the goal of universal newborn hearing screening.
In his speech at the opening plenary session of the meeting entitled, “The Promise of EHDI Programs: An Architect’s Perspective,” Rep. James T. Walsh (R-N.Y.) pointed out that achieving a nationwide screening rate of 93 percent (almost 3.7 million babies per year) required commitment and sustained effort from many different stakeholders. Fifteen states are screening 98 percent or more of all newborns and 21 additional states are screening 95 percent or more. Only two states (California and Ohio) reported that they are screening fewer than 80 percent of all newborns but even these states have made substantial progress over the last year. Walsh noted that he was particularly pleased that so many parents, physicians and early intervention program staff attended the 2006 conference because all of these groups had an important role to play in making sure EHDI programs were as efficient and comprehensive as they should and can be.
However, much work remains to be done to integrate screening programs with diagnostic services, early intervention programs, family support and health care services. Before all children with hearing loss and their families will enjoy the full benefits of EHDI programs, significant improvement is needed with such issues as improving follow-up of infants and young children who fail the newborn hearing screening test; making diagnostic services, hearing aids and cochlear implants more accessible; creating more effective early intervention programs for children with hearing loss; and better educating stakeholders.
Unfortunately, the fact that most states continue to be primarily dependent on short-term federal grants to operate their EHDI programs means that much of the progress made during the last few years could easily be lost. In fact, in a recent survey, state EHDI coordinators from eight states indicated that their state’s EHDI program would cease to exist if federal funding were eliminated and coordinators from 26 other states indicated that loss of federal funding would cause major problems with their EHDI programs. Walsh said he would continue to work to secure federal newborn hearing screening funding for 2007 as part of the Congressional budgeting process.
During the conference, speakers repeatedly emphasized the importance of expanding the vision of EHDI beyond hospital-based newborn hearing screening. Unfortunately, many people viewed the original bill shepherded through Congress by Walsh in 1999 as a “screening” bill. Fortunately, that bill, which is expected to be reauthorized during the current session, provided a framework within which EHDI programs have been able to grow beyond hospital-based screening. Like any good architect who plans a building so that it can grow to accommodate future needs, Walsh designed his original bill to provide enough flexibility for the federal partners (the Maternal and Child Health Bureau and the Centers for Disease Control and Prevention) to fund a variety of projects that are contributing to the creation of successful EHDI programs. Many of those efforts were highlighted in the presentations made during this year’s conference.
For example, a number of state EHDI programs have begun working with Head Start and Part C early intervention programs to make sure that children enrolled in these programs are regularly screened for hearing loss. In particular, one feasibility study using otoacoustic emissions to screen children in Migrant, American Indian and Early Head Start programs was found to be extremely successful. More than 3,500 birth to three-year-old children in these programs were screened for hearing loss by program staff and 180 who failed the testing were referred to their healthcare provider for diagnostic testing. Six children (an incidence of almost two per 1,000) were identified with permanent hearing loss and 72 additional children were found to have fluctuating conductive hearing losses caused by undetected ear infections (otitis media).
The study provided convincing evidence that newborn hearing screening programs alone are not enough because even so-called “universal” screening programs miss some children; follow-up for many infants who fail newborn hearing screening is not successful; some children experience late-onset hearing loss; and many preschoolers have repeated ear infections that can significantly disrupt language acquisition and other educational progress. Hence, ongoing hearing screening programs are critical for identifying a wide range of hearing health needs that are not identified through hospital-based newborn hearing screening programs.
Another session focused on the difficulties in funding hearing health services for infants and young children. It was a surprise to many to hear that most health insurance companies do not cover the costs of hearing aids because they consider them to be educational or cosmetic instead of medically necessary. Even in cases where some coverage is provided (eight states have now passed legislation requiring at least some coverage of hearing aids for children), the insurance reimbursement amounts are low.
Although challenges remain in accomplishing the vision described by Dr. Koop in 1988, progress is clearly being made. For example, a recent report from Massachusetts (available at www.infanthearing.org) noted that the state’s EHDI program was identifying 2.87 children per 1,000 with permanent hearing loss at a median age of 1.15 months. Newborn hearing screening was successfully done for 99.2 percent of live births and 82 percent of those who failed the hearing screening test received a diagnostic evaluation before three months of age. As state systems of screening, diagnosis, early intervention, family support and integrated healthcare continue to develop, results like these are being reported by more states. Clearly more work is needed and with continued federal support and hard work by state EHDI programs and other stakeholders we will realize the benefits associated with early identification of hearing loss described more than 20 years ago by the Healthy People 2000 goals:
“. . . it is difficult, if not impossible, for many [children with congenital hearing loss] to acquire the fundamental language, social, and cognitive skills that provide the foundation for later schooling and success in society. When early identification and intervention occur, hearing impaired children make dramatic progress, are more successful in school and become more productive members of society. The earlier intervention and habilitation begin, the more dramatic the benefits.”
