The Joint Commission on Infant Hearing has set guidelines requiring that newborns be screened by one month, diagnosed by 3 months, and receive intervention by 6 months. With all the new data about the earlier the better, the Joint Commission is considering moving from the 1-3-6 model to a 1-2-3 model. I am certainly a fan of moving to the 1-2-3 model but we have an even more significant problem. What do we do about kids who are lost to follow-up? Hospitals may successfully screen babies before they leave the hospital but how do we get the babies to future appointments?
What happens after screening?
When babies are referred after screening, the parents are often giving a piece of paper with contact information about who to call to schedule a follow-up appointment. If the birthing hospital has an audiology program the parents are usually given that phone number. But if the family lives far away coming back to the birthing hospital may be difficult. Parents may not know how to find a facility close to them.
How are we doing?
First of all, it is important to remember that hearing loss is a neurological emergency. Auditory brain development requires early auditory exposure. Christine Yoshinaga-Itano published an article in Pediatrics last week which demonstrated the importance of early management. While we seem to be successfully screening newborns, we are not always successfully getting them to follow-up. The study reported that, even after 17 years of screening babies, a significant number of infants are not meeting the 1-3-6 guidelines. While 98% of infants are screened, the study reports that nearly half of the babies are not getting follow-up on time. Problems with getting appointments, difficulty traveling to the appointments, getting time off from work, and, in some cases, paying for hearing aids. Even when states have programs to pay for hearing aids, it can take months for the hearing aids to be approved and delivered. For families who are not English language speakers, the problem can be more difficult.
The study followed 448 children in 12 states and measured the number of words the children had in either spoken language or sign language and compared them to their hearing peers. On average, hearing children have about 600 words in their vocabulary by 30 months. Children who meet this goal would have a vocabulary quotient (VQ) of 100. The children with hearing loss who met the 1-3-6 guidelines and had no additional disabilities had a VQ of 82 on average, low normal. Children who did not meet the 1-3-6 guidelines scored below 70, ranking in the lowest 10th percentile. Again, early identification makes a difference.
What is the role of the pediatrician?
Pediatricians need to be very proactive here and many are not. They need to check with parents about whether they have followed up and help them find facilities that are convenient. Pediatricians know that a certain percent of babies who fail screening will pass the diagnostic test so they may not feel it is important to push families to get tested. Considering the low incidence of hearing loss, pediatricians may not have a lot of experience with children with hearing loss and may not understand that hearing loss is a neurological emergency and that services need to be obtained quickly. If we do not educate pediatricians, the battle can be lost.
What is the role of audiology programs?
Audiology programs have a significant responsibility in helping solve the delay. Having run audiology programs for more than 40 years I understand the need to keep appointments filled to satisfy administrators. Audiologists need to educate the administrators to help them understand the life long effect that delayed management can have on children with hearing loss.
Depending on the demand in a particular clinic, a certain number of appointments need to be set aside each week so that babies can be scheduled quickly when a parent calls and says “my baby failed newborn hearing screening.” If the appointment is not filled the week before, other patients can be put into the slot.
The problem of getting hearing aids quickly is another issue. For families who can afford to pay for hearing aids, they can be ordered quickly. For families who need to go through complex state programs like Medicaid, which can take several months, loaner aids need to be available. Some hearing aid companies are willing to participate in this kind of a program, especially if they can expect to sell hearing aids. Manufacturers may be willing to donate hearing aid models they are eliminating. While not ideal, centers can ask people getting new hearing aids to donate their used hearing aids for a children’s hearing program. I spent a great deal of my time begging for hearing aids when I was a clinic director. It was a job I hated but, even more, I hated not have hearing aids for babies.
Audiologists need to be sure that they know where and how to refer for therapy once technology is fit. Hearing aids, as we know, do not solve the problem. For families who are choosing listening and spoken language, therapy is essential. We also know that not every SLP is an expert in managing children with hearing loss. Audiologists need to know where the listening and spoken language specialists are in their area, and more SLP’s need to become experts in listening and spoken language.
What is the role of policy makers?
It is very good that policy makers have passed newborn hearing screening legislation all over the US, but they have not managed the rest of the program. They have not thought about what happens if a child fails the screening. Why this may not be the best time to try and add things to health insurance, we need to insist that health insurance cover hearing aids, at least for children. And we need to push the policy makers in our states to make it a funded mandate.
Okay everyone – get to work!!!