As audiologists, we would love to hear a parent say, "Our recent set of hearing aids with integrated FM was fully paid for by health insurance without a fight." Unfortunately, this experience is not typical. Even though more families have access to insurance funding for hearing aids, it is often inadequate.
Today children are routinely identified with hearing loss shortly after birth and have opportunities to access sound using advanced technology within the first few months of life. Once a child is given access to sound, it takes the collaboration of the parents, audiologist, speech-language pathologist, and educator to help that child reach his or her maximum potential. Paired with early intervention, early access to sound has resulted in improved speech, language, and developmental outcomes for children with hearing loss (Holt & Svirsky, 2008; Nicholas & Geers, 2006).
To understand parent experiences more thoroughly, we surveyed parents (n=333) and asked for their valuable insights in written comments (Muñoz, Blaiser, & Barwick, in press). Three themes emerged from these comments: cost, retention, and daily management.
Half the parents in the study (47%) reported hearing aid cost was a barrier. Although 20 states have legislation mandating insurance coverage of hearing aids for children, there is considerable variability in how much is covered (NCHAM, 2012; ASHA, 2012), and coverage is sometimes inadequate. "Even though we have good private insurance," one parent reported, "the coverage for hearing aids is miserable—$500 every three years." Some parents experienced delays in getting hearing aids because of funding, even when they had insurance coverage, saying, "We were upset that it took a very long, traumatic time to get the aids." Other parents reported delays because they needed time to save money for the purchase.
"My son is only 10," a parent indicated, "and we have purchased two sets of digital aids. By the time he's in college we will have invested $20,000." Another, frustrated by the lack of insurance coverage, said, "I'm angry that our young child cannot get help from our insurance company to pay for something that affects his physical, academic, social, and emotional health!"
In some cases the cost barrier delayed access, which can negatively impact a child's speech, language, and developmental outcomes. "The reason for the huge gap between diagnosis and obtaining hearing aids was because it took me that long to save enough money to buy the hearing aids," one parent recalled.
Loaner hearing aids, available in many states, can provide benefit in the short term, but parents were not always aware of this option, saying, "I was never told there were organizations that might be able to provide us with a loaner." And some children did not get hearing aids at all: "Can't get hearing aids due to the cost, and not covered by anything."
Parents often grapple with the thorny issue of retention. As one parent said of hearing aids, "This is all new—and then the biggest hurdle is getting your baby or toddler to keep them on." Some parents reported struggling with retention for months: "She is now good about wearing them, but we did go through almost a year of her constantly pulling them out."
But retention difficulties can be anticipated, and parents equipped with strategies achieved more success, as one parent explained: "It was really difficult to keep his aids on when he was younger, due to him pulling them out. We were lucky to be recommended a tie-under-the-chin hat, so he could not pull them out. I don't know what we would have done if we were not told about it."
Not all strategies worked for everyone. One parent said, "We tried toupee tape and hats. Nothing seemed to work until he got glasses, and now we hook the aids on those." Some resourceful parents identified their own strategies: "I changed his earmolds from clear to blue, so I could see from a glance if the aids were in his ears."
Many parents expressed a need for support as they confronted challenges and made decisions related to their children's hearing aids. One parent recalled, "It was scary being handed the hearing aids we were paying so much for—I felt alone in the experience." Half the parents (48%) reported receiving inadequate instruction about how to check the hearing aids using a listening stethoscope; 18% of parents of children younger than 3 years did not even own a listening stethoscope.
"When my child received hearing aids," a parent said, "I would have liked to have been told how to care for them, how to check if they weren't working, what steps to take before taking them to be repaired, and when to replace earmolds." Parents also wanted to know that they were doing everything they could for their child, indicating, "After having the hearing aids for a year and a half, we still do not have a good understanding of the components that can be used with hearing aids. If we don't know about other options, how do we know how to ask about it or research it?"
Some parents wanted to feel more empowered in their ability to help their children, saying, "We often feel like we're ‘winging' it and could be doing this better." Over time, though, parents gained confidence in their skills: "At first I was very intimidated by the hearing aids and getting them on my child. Now I'm able to do many of the repairs myself and keep a repair kit with supplies at home. It is an amazing difference!"
Parents also indicated they wanted audiologists to explain the benefits of consistent hearing aid use: "Audiologists need to convey the importance of keeping the hearing aids on all the time. I viewed the hearing aids as oxygen and put them in her ears constantly. [She] asks for them, retrieves them, and wears them to bed at night to listen to music."
Opportunities for Improvement
To provide effective services, audiologists and speech-language pathologists need to be aware of current evidence-based practices for hearing aid selection, fitting, verification, and validation (American Academy of Audiology, 2003; Pediatric Working Group, 1996). Often, parents are unfamiliar with hearing loss and the issues that will become part of their daily lives. For a child to reach his or her potential, it takes everyone working together—parents, audiologists, SLPs, and educators (Muñoz & Blaiser, 2011). Professionals need to share resources with families and provide ongoing support.