Newborn Hearing Intervention At long last, the majority of infants now receive screening to detect hearing loss within the first two days—not years—of life. But there’s still a long way to go to ensure that this generation of infants receives the early intervention services they need to enter kindergarten with language skills on ... Features
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Features  |   May 01, 2003
Newborn Hearing Intervention
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Hearing & Speech Perception / Hearing Disorders / Special Populations / Early Identification & Intervention / Features
Features   |   May 01, 2003
Newborn Hearing Intervention
The ASHA Leader, May 2003, Vol. 8, 1-18. doi:10.1044/leader.FTR3.08102003.1
The ASHA Leader, May 2003, Vol. 8, 1-18. doi:10.1044/leader.FTR3.08102003.1
At long last, the majority of infants now receive screening to detect hearing loss within the first two days—not years—of life. But there’s still a long way to go to ensure that this generation of infants receives the early intervention services they need to enter kindergarten with language skills on par with their peers.
Early hearing detection and intervention (EHDI) programs are screening almost 70% of all babies born today, thanks to a threefold increase in programs across the nation. After a landmark 1999 federal law funded EHDI programs, the number of states with laws grew from 11 in 1998 to the present 38 plus the District of Columbia. Another four states voluntarily screen 85% of newborns.
In Colorado, a groundbreaking study of 294 infants screened in the state’s hospitals has shown that 80% of newborns with confirmed hearing loss initially identified by screening achieved normal language skills by 5 years of age.
“For the first time, we are able to show that early identification does make a difference,” said Christine Yoshinaga-Itano, associate professor and chair of the department of speech, language, and hearing science at the University of Colorado, Boulder.
But linking children to early intervention is crucial, she emphasized. “We can’t just identify hearing loss and then not provide treatment.”
Losing Babies to Follow-Up
After screening, the critical links connecting infants and families to intervention often weaken—or break. Nationally, only half of the newborns who are referred for follow-up audiologic evaluation actually receives it. And of those who receive this evaluation and are diagnosed with hearing loss, a third do not receive early intervention, according to 2001 data submitted to the Centers for Disease Control and Prevention (CDC) by the Directors of Speech and Hearing Programs in State Health and Welfare Agencies.
“Loss to follow-up is a major national issue,” said Judith Gravel, professor of communication sciences at Hunter College and chair of the Joint Committee on Infant Hearing. The reasons, she added, “may be different in every state and specific to local areas.”
In Rhode Island, Florida, and Connecticut, directors of EHDI programs found that family moves, adoptions, and language and cultural barriers impede access to early intervention services. Some programs lacked data reporting requirements for tracking infants, staff to implement follow-up, and awareness among physicians of the urgency in diagnosing hearing loss.
These issues are being examined in a CDC study of five states—Michigan, Massachusetts, Virginia, Utah, and Arkansas—to identify why families do not return for evaluation and to identify successful and innovative remedies. The study, which began in 2002, will examine hospital policies, reimbursement, audiologist involvement, physician support, logistical barriers for families, cultural competency, and follow-up techniques.
“We need to understand the barriers and identify models that may be useful in certain areas,” Gravel said.
As part of a New York EHDI study, Gravel struggled with a higher loss to follow-up rate in New York City. “It may be that low-income families had economic issues,” Gravel said. She found that follow-up improved when support personnel called or wrote letters to families. Other states have developed parent information materials for multilingual populations and raised awareness of EHDI through public education campaigns.
Connecticut, which began a program in July 2000, raised awareness of EHDI through a media campaign. In the six largest cities, billboards and bus signs got the message out and were later displayed in community health centers and hospitals. News stations also ran segments about the EHDI program.
Problems occur even before infants leave the hospital, when a high percentage of babies are referred for follow-up services. Some states have referral rates from 9%–20%, far higher than the benchmark maximum of 4% set by the Joint Committee on Infant Hearing.
“The efficacy of a screening program is to provide follow-up services to infants who have true hearing loss. Any time a high referral rate is combined with a high loss to follow-up rate, you have an inefficient system,” Gravel said.
Tracking the Data
One essential component in ensuring that families stay connected to services is an information management system that tracks babies after they leave the hospital. According to the data from the Directors of Speech and Hearing Programs in State Health and Welfare Agencies, only 25 states reported data for both the numbers of infants referred for follow-up and those who were actually evaluated. The same number reported data on infants with diagnosed hearing loss and those in early intervention.
Hospitals frequently keep records of the number of live births, the number of infants who receive hearing screening, and the number who fail. Facilities routinely report to the state’s EHDI agency, typically located within the health department. However, hospitals and professionals in the community may have different requirements for reporting follow-up evaluations, the evaluation results, and placement in early intervention.
Even when the data are reported, EHDI programs may not track individual names and identifying information through a mechanism like electronic birth certificates. A state may know that 87 infants were referred for follow-up evaluation, but not know the names of the families. As a result, if a parent does not follow through, no means exist of contacting the parents with reminders, alternate referral information, or additional information about EHDI.
The Rhode Island Example
States with good rates for follow-up and placement in early intervention often implement automated tracking and surveillance systems for infants who fail screening. In Rhode Island, which was the first state in the nation to establish an EHDI program, 100% of children diagnosed with hearing loss are linked to intervention.
When a child is referred for diagnostic testing, the audiologist informs the parent in person of the recommendation for follow-up. The parent also receives a letter with the screening results and a list of local pediatric audiologists. While reporting a diagnostic hearing screening to the EHDI program is not mandated, audiologists generally provide this information, said Cheryl McDermott, audiology coordinator for the Rhode Island Hearing Assessment Program (RIHAP).
EHDI data is integrated into KIDS NET, a computerized database that tracks children’s public health preventative services. The information management system generates automated reminders for families when their children need vaccinations or diagnostic audiometry. Electronic data transfer protocols facilitate information sharing among RIHAP, hospitals, the health department, and primary care physicians and assist in tracking infants with late-onset hearing loss.
“With an integrated database, we can look for an updated address and phone number, which improves our ability to track children for follow-up services,” said Ellen Amore, manager of newborn screening. “We also can look at whether the child with hearing loss has good access to a medical home by using database markers such as immunization.”
To address service gaps, the Rhode Island Infant Hearing Screening Follow-Up Committee brings together professionals, families, and advocacy groups for a quarterly study to identify children who should have entered early intervention but have not. “These parents receive a follow-up call to see if we can be of assistance with obtaining further testing,” McDermott said. “If necessary, the physician is also contacted.”
Other states that have passed EHDI legislation are quickly realizing the importance of tracking systems. Having passed an EHDI law in 1999, the Oregon Speech-Language and Hearing Association is advocating for S.B. 401, which would create a hearing screening test registry and a tracking system.
Intervention Delays
Even with good tracking and reporting systems, early intervention can be delayed as families negotiate their way through the system. The state agency responsible for early intervention, typically funded under Part C of the Individuals with Disabilities Education Act (IDEA), may not be the same agency responsible for the infant hearing program. The early intervention agency may have its own procedures for determining eligibility for services—or even different eligibility criteria. Even if the child has already been evaluated under the infant hearing program, the evaluation may need to be repeated under the state’s Part C agency causing further delays.
“Each agency has different objectives, philosophies, priorities, and concerns,” Amore said. “Because all are a crucial part of EHDI, we need to consider different perspectives.” Rhode Island met the challenge of interagency coordination by forming interdisciplinary committees: the Hearing Screening Advisory Committee, Hearing Screening Follow-Up Committee, Pediatric Audiology Task Force, and a Medical Home Task Force.
Nationally, as IDEA is reauthorized, ASHA aims to smooth the transition through proposals that would require states to:
  • immediately refer children with a potential hearing loss who are not currently receiving services to the Part C agency

  • describe how early intervention will be integrated with EHDI

  • designate a representative from the EHDI program on states’ Interagency Coordinating Councils to advocate for greater coordination of services

More Funding Needed
As EHDI programs get underway, the number of children with hearing loss who need services has increased exponentially—while the availability of services and funding has not. Florida has experienced a ninefold increase in the number of children with hearing loss receiving intervention services, and in Rhode Island the number of families needing services has tripled.
To support states in meeting these needs, ASHA is advocating that next year’s federal budget include $11 million in funding for state EHDI programs through the Health Resources and Services Administration and $9 million through the CDC.
But with deep deficits, states have searched for ways to serve more children through Part C with no additional funding. States have considered proposals to make Part C a non-entitlement program, require families to pay for services on a sliding scale, require early intervention providers to bill insurance companies directly, or limit insurance reimbursement.
Other states—mindful of the budgetary whims of state legislators—have begun to push for EHDI legislation. Alaska, which voluntarily screens 80% of all newborns, has a bill in the legislature that would require hospitals to screen all babies and establish a tracking and follow-up system.
“We have done great things without the need for legislation, but when our grants run out, there will be no more money to cover these services,” said Lisa Owens, an SLP in Anchorage who serves on Alaska’s EHDI advisory board.
“Economic times change and government leaders change. It’s important that we keep going to ensure that 100% of all babies are tested, identified, and receive appropriate early intervention services by 3 months of age.”
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May 2003
Volume 8, Issue 10