Hearing loss is the most common birth defect in the United States, more common than Down syndrome or cystic fibrosis. Yet, in a recent survey conducted for the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), nearly three in five new and expectant mothers considered themselves unfamiliar with the issue of hearing loss in children.
That’s how Jackie Busa felt when her son, Colton, failed his newborn hearing screening.
“Before my son was diagnosed with a profound hearing loss, it simply was not an issue that kept me awake at night,” said Busa. “Once the shock wore off, we were frantic trying to figure out our options.”
She remembers how little she knew at first about the potential for children with hearing loss to develop listening and spoken language skills. Busa and her husband, Michael, first enrolled in a signing workshop for babies and a parent-infant program where they learned about childhood language development. Through reading and participation in various programs, the family ultimately decided to pursue listening and speech therapy for Colton.
Busa’s experience is not unlike that of many new parents who discover that their baby has a hearing loss. Over the last few decades, however, federal agencies such as the Centers for Disease Control and Prevention and the National Institutes of Health have worked with organizations representing hearing health professionals and families, including AG Bell, to increase awareness of hearing loss and its impact on children. Since the passage of the Children’s Health Act of 2000, the percentage of newborns screened for hearing loss has increased to an estimated 93 percent. Still, nearly half the infants who fail the screening do not receive further hearing tests and even fewer are enrolled in early intervention programs by age six months.
Because infants and toddlers begin to learn language by hearing it long before they can talk, missing out on an early diagnosis also means missing out on hearing technologies such as hearing aids and cochlear implants, in addition to early intervention programs that help children build their language and communication skills. This ultimately can have a negative impact on a child’s speech and language development, educational development and even social and emotional development – but it doesn’t have to be this way.
Raising Awareness
Today, the vast majority of children with hearing loss can learn to listen and talk. However, nearly 70 percent of mothers recently surveyed said they were not informed about spoken language as an option for children with hearing loss. To help raise awareness, AG Bell has launched “Hear from the Start, Talk for a Lifetime,” a multiyear campaign to educate parents and professionals about the benefits of early diagnosis and intervention for children who are deaf or hard of hearing.
Over the next five years, AG Bell and a range of corporate, foundation and nonprofit partners will take a community-based approach to educating primary care providers, early interventionists and legislators in local communities across the U.S. For families whose children fail the newborn hearing screening, the campaign will offer information about hearing loss and recommend next steps, such as participation in a family-centered early intervention program.
Since hearing loss can develop after birth in up to 30 percent of children, AG Bell also will give parents of children who pass the screening simple tools to help monitor whether the child is reaching age-appropriate speech and language milestones.
Busa and her family could have used those tools. While learning to manage her son’s hearing loss, the therapist working with the family noticed that Colton’s older sister, 27-month-old Olivia, was having trouble putting words together. What the therapist initially thought might be a processing disorder was diagnosed as a moderately severe to severe hearing loss. Busa vividly recalls the sense of urgency she felt knowing that her daughter’s late diagnosis might make it more difficult for her to develop speech and language skills.
Meeting the Needs of Families
Raising awareness about hearing loss is only the first step. Next comes providing parents with appropriate information so that they can act on behalf of their children’s health.
With more than 95 percent of children with hearing loss born to at least one parent with normal hearing, it’s not surprising that nearly all mothers in AG Bell’s survey said they would be inclined to explore spoken language if their child were diagnosed with hearing loss. However, parents reported that they would not know where to turn should the need arise.
Many parents view pediatricians or other primary care doctors as the trusted source for medical information related to their children. However, nearly 70 percent of physicians did not feel prepared to meet the needs of children with permanent hearing loss, according to a survey from the National Center on Hearing Assessment and Management and Boys Town National Research Hospital.
Families who do not get information about hearing loss from their primary care providers also are not getting information from other sources. AG Bell’s survey found that 60 percent of families do not receive any information about spoken language from a trained professional when their child is screened or diagnosed with hearing loss.
For parents to understand hearing loss, professionals must recognize the effects of unmanaged hearing loss in children and make an effort to discuss hearing loss with families as part of the standard of care.
To help make this happen, the AG Bell Center for Professional Excellence will expand its offerings of continuing education and training, which currently include the FIRST YEARS distance education program in auditory learning, the Cochlear Implant Fellowship Award program and a series of online seminars. AG Bell will also offer a conference next year specifically focused on auditory-verbal therapy. In addition, the AG Bell Academy for Listening and Spoken Language®, established in November 2005, will support the growing demand for professionals by setting standards of excellence and developing new certifications to ensure that people with hearing loss have access to qualified professionals well-versed in both hearing loss and spoken language.
Making a Lasting Difference
If diagnosed and addressed early enough, most children with hearing loss can develop language skills comparable to their hearing peers by the time they enter first grade. Busa found that her daughter’s late diagnosis made it more difficult to develop age-appropriate language skills. In contrast, newborn screening, combined with early diagnosis and intervention, enabled Colton to keep pace with his hearing peers and even surpass his fellow kindergarteners in reading ability and comprehension. The sooner more new and expectant parents are aware of the issue and know what to do about it, the more quickly they can act on behalf of their child.
The AG Bell campaign’s efforts to raise awareness of hearing loss and spoken language also make economic sense. When children with hearing loss have age-appropriate language skills, school systems can save more than $400,000 per child in special education costs and related services through high school.
For Busa’s family, Olivia’s diagnosis came just before she entered preschool. After learning that the school district did not offer Olivia an opportunity to participate in a regular classroom, Busa advocated for an alternative until the district agreed to start a pilot program for children with hearing loss in a neighborhood preschool.
Busa’s advocacy efforts now serve as an example of how everyone – working through chapters, interest groups, community partner organizations or even on their own – can foster the type of change the “Hear from the Start, Talk for a Lifetime” campaign hopes to achieve.
And by multiplying Busa’s efforts with the help of people across the country, the campaign will help to ensure that the issue of childhood hearing loss, often considered an invisible handicap, is not easily ignored.
