Early Newborn Hearing Screening
Originally broadcast: June 27, 2001
Faye: Hello everyone. This is Faye Manaster Eldar of the University of Illinois at Chicago, School of Public Health, Center for the Advancement of Distance Education. I'm the family coordinator of the Quality Community Managed Care project and I'm happy to be with you today and bring you another one of our webcasts in our continuing series focused on children with special health care needs and managed care.
Today's webcast is about a very important topic: newborn hearing screening. We're privileged to have three experts in the area of newborn hearing screening with us today. Our first speaker will be Dr. Betty Vohr, a pediatrician and director of neonatal follow-up at Women and Infants Hospital, Brown Medical School in Rhode Island. Dr. Vohr has been at the forefront of newborn hearing screening nationally, and is in a leadership position at the national level for newborn hearing screening.
We have two parents with us today whose young children were diagnosed by newborn hearing screening: Regina Brady from Rhode Island and Jennifer Pinski from Illinois.
Dr. Vohr, we'd like to get started first of all, by you explaining to us, please, what exactly is newborn hearing screening? Why is it important, and a little bit about the history and the background.
Betty: Certainly. Newborn screening is initiated when there's a disorder that's identified that has a certain prevalence in society and when that disorder causes problems if it is not identified early. Certainly hearing disorders fill that criteria. The incidence that's now been identified in the United States is about two to four per thousand. So if we think of that in terms of 100,000 births, it's about 220 children would be identified each year with permanent hearing loss. Let's compare that to something else that we're screening for, like PKU, and that's only two per 100,000. So it's sort of amazing that we didn't start screening for permanent hearing loss much earlier.
The reason it's important is that there have been some incredible studies done in the last few years in various research centers in the United States. One was completed by Dr. Christie Yoshenoga Etono in Colorado. And she clearly showed that children who were identified and began receiving early intervention services and amplification, as appropriate, in the first six months of life had significantly better language scores at 36 months of age compared to children who were identified and began receiving intervention after six months of life. So this is a disorder that's present at birth. It is the most common congenital disorder that we can identify, where, if we identify it early, we can make a diagnosis and provide interventions that match the needs of that family, that are going to make a tremendous difference for their children.
Faye: How long has newborn hearing screening been around?
Betty: Well, it's relatively the new kid on the block. There was a demonstration project funded by the federal government in 1990 and Rhode Island and Hawaii were two states that were funded to see whether children or infants in the well-baby nursery could be screened. And that project was very successful. Then in 1993, the NIH had a consensus conference using the data that had been collected in this demonstration project, and they recommended universal newborn hearing screening. But by 1993, only Hawaii and Rhode Island were, had, legislation at that time for universal screening.
Faye: Now before we go on, Dr. Vohr, could you please tell us what the NIH is?
Betty: The National Institutes of Health. It's a federal agency. And they fund research around the country, and they also will sponsor what's called a consensus conference. It's a conference in which you bring together experts in a certain area. They review all of the literature that's been published. They gather the evidence and then they make recommendations of what they feel would be optimal medical intervention.
Faye: You also mentioned that in 1993 two states had laws about newborn hearing screening. Why do we need laws about this?
Betty: Well it's it's difficult. It would be nice if we didn't have to have laws for medical treatment or public health care that was indicated. However, we're living in an era right now, where medical costs are high and the insurance companies are reluctant to support new initiatives of medical care. So a lot of the states have been working on model legislation, and actually this weekend I checked the ASHA website and there are now 34 states and the District of Columbia that have legislative mandates for newborn hearing screening.
Faye: Now what is ASHA, Dr. Vohr?
Betty: The American Speech Hearing Association. And this is a professional organization of speech language therapists. Also some audiologists belong to the association and they are a cooperative group. They work together on standards, protocols, research, etc.
Faye: We definitely will have a link to that organization on our website and we will have other prominent organizations that are involved with serving children who have hearing impairments, so our listeners can get additional information. And could you tell us also exactly what happens during newborn hearing screening? I think many people can think about when they've gone to have a hearing test and they've had to raise their hand when they heard a sound, something or something like that. What do you do for the babies?
Betty: Well that's absolutely correct. Years ago, we just had behavioral methods like a horn that would be blown and there would be a recording device to see whether the infant had moved in the crib. It was called a cribogram. And that was a problem really in getting newborn hearing screening started. There were not really good, valid, reliable methods. And currently, there are available two methods. One is called oto acoustic emission, OAE for short, and the other is called automated auditory brain stem response or AABR for short. And sometimes a combination of these two methods are used.
Both of these methods are very quick. Studies have shown they take between nine and eleven minutes, sometimes even shorter, but that's the median. And they do provide reliable results. In both of the methods, a small probe is placed into the ear canal. It's not invasive. It doesn't hurt the infant in any way, and a quick stimulus is produced. And both methods, they are hooked up to computers which then can record the infant's response. With OAE, it's a response of the infant's cochlea where there are hair cells that move and respond in response to sound. And in AABR, it's the eighth nerve which responds. So in a healthy ear, without debris in the ear canal or fluid in the middle ear, the vast majority of them will, 99 percent, will respond normally to either of these methods.
Faye: And this is done right in the hospital when the baby is born?
Betty: Yes, and that's the wonderful part of this, because now you have a captive audience here. You don't have to schedule a family with a newborn to come in for a screening test. It's usually done between six and 48 hours of age and it can be done in the mother's room or in the nursery. It can be done in the neonatal intensive care unit. There are some problems with noise interference, but for the most part, they can be done in nurseries.
Faye: Now, I'd like to ask each of our parent speakers to tell us about their family and their babies with hearing impairments and their own experiences with newborn hearing screening tests, the first one that was done. Regina, could you go first please?
Regina: Sure. My daughter was born three years ago at Women and Infants and she was screened through the Newborn Hearing Screening, the OAE, in the hospital. She actually had it done three times because she was large at birth and she did have some fluid in her ears and she obviously failed all three of them. And then went back about a month after discharge to the hearing assessment program to have the AABR done and, in fact, that was when we got the actual diagnosis of her hearing impairment which is a moderate to severe hearing impairment and at that point--do you want me to go on with the whole history or just be newborn hearing?
Faye: We just want to hear of your experience, did you see her go through the hearing screening. How did that work?
Regina: The first two times, they took her out of the room. It was done in their nursery. The third time they did it in in my room with me. And then with the AABR, I took her with me and I was in the room while that was done.
Faye: Did you know anything about newborn hearing screening before Mikayla was born?
Regina: I did not.
Faye: And Jennifer, could you please tell us about your experience with Max and having his hearing tested?
Jennifer: Sure. Max had the newborn screening three times also when he was born and failed all three times. But I did know about the screening.
Faye: And how was that that you knew about the screening beforehand? Who told you about it?
Jennifer: About two months after I became pregnant, I joined the Junior League in our town and I knew that the Junior League had promoted and helped get through area hospitals the machines they needed for newborn screening. So, I was aware that the hospitals did do the tests. Most people, if the child passes, are not aware that their child is even screened for this. But I--right after I had him--I said, when will he have his hearing test? And I really had no reason to ask this. We had no history. I just was curious because I knew it was a test he would have and I wanted to know when he was going to have it. And after the first day, they told me that he was too fussy and that he had to do it again the next night. And this went on for the two days I was there. I kept asking and they would tell me he was fussing and what not. But then I found out afterwards that what was happening was he wasn't passing. You know everything, the atmosphere was fine and he was fine. He just wasn't passing and they didn't want to tell me until they had confirmed it enough times. They had just received the machine. They had it less than a year and they weren't real comfortable, I guess, was what they were telling me now. They wanted to make sure that they had done everything that they could. So we were told right before we left the hospital that he did not pass.
Faye: Thank you for sharing that with us and we will come back and find out more information about the experience that each of you had. I'd like to ask Dr. Vohr now, can newborn hearing screening cause any complications or have any side effects on the baby, and how accurate is it actually?
Betty: Okay in terms of any problems, no. It is safe. There are no side effects and there is no discomfort at all caused by doing a newborn hearing screen. In terms of I guess your second question was, how accurate? Well, both tests are based on natural physiologic responses of either the inner ear or the auditory nerve. Now there are some occasions where you could get a false positive. That means they don't pass the test, but they don't have a hearing loss and that could be if there is a lot of debris in the ear canal from from the delivery, a substance called vernix which is a cheesy material, which takes about 24 to 48 hours sometimes to dry up or if they happen to already have what we call middle ear fusion, a little bit of fluid in the middle ear. But that usually absorbs and dries up in 24 to 48 hours and that's sometimes a reason why, in the well baby nurseries, the screener may be reluctant to initially say that it was that the baby did not pass because sometimes if they wait a little bit longer, it turns into a pass. Sometimes there is a later onset progressive hearing loss, some of the hereditary hearing losses. The infant actually passes the screen, a very small percent. So those might be missed.
We talk about false positives and false negatives, those are sort of the reasons you might not get a hundred percent accuracy and most of the studies that have been done show that the test is sensitive at about 90 percent and specific at about 90 percent, that you're always going to have a few more not pass than actually have permanent hearing loss, and that there are going to be certain types of hearing loss that you don't pick up.
Another one is called auditory neuropathy, where if you're only being screened with oto acoustic emissions that might be missed. This is also a type of hearing loss that is not that common, but it's more common in babies in the neonatal intensive care unit. And that's why more and more centers are actually using both methods currently or are starting to use both methods.
Faye: Well I'm glad that you explained that to us and also pointed out that this needs to be done. I have a personal interest in this--looking back in the experience with my own daughter who was extremely premature and was in the nursery for 14 weeks. I asked the neonatologist to test her hearing and he said "oh we don't need to do that. She doesn't act deaf" and she was not diagnosed until she was one year old. And in the reading I've been doing in preparing for the webcast, I found out that only 50 percent of the babies who were diagnosed with a hearing loss had any type of medical problems when they were born. Most of them have no medical problems at all.
Betty: That's absolutely correct. You know now with the Human Genome Project, and looking at the genetics of hearing loss, the estimates now are that 50% percent of hearing loss is actually related to genetic difference that is found in families. I think there are now over 200 gene deletions that have been identified that are associated with hearing loss. And that's why it's so important to screen all babies, not just those who have risk factors in the neonatal intensive care unit, but babies in the well baby nursery. In fact, when we look at all babies identified with hearing loss, half of them are cared for in well-baby nurseries.
Faye: I think that's something really important for all of us to know, for parents to know and for people who are developing policies for health care as well as insurance companies. Now my next question is about insurance. How much does newborn hearing screening cost and does health insurance pay for it?
Betty: Well, there have been several studies reported on cost. We recently actually conducted a multi-center study on hearing costs of three methods: OAE, AABR and the new two-step method. And the costs were really pretty incredibly low as far as I'm concerned. They ranged from $16.45 to a high of $25.42. So if you can think of other things that are done to newborns, blood tests, etc., this is really economical to say the least.
Faye: Does health insurance typically pay for it or is this an issue?
Betty: It varies really by state. Some states are having difficulties with this. I know California right now is starting the one hearing screening, because Medicaid is covering all of the Medicaid patients. In Rhode Island we had legislation passed in 1993 mandating third party reimbursement. So all of the private insurers, the HMO's etc., either have to bundle into their capitation for newborns or pay for hearing screening individually. In states now, many of the states are trying to incorporate into their legislation, payment for the hearing screening. We're moving in that direction. Public health officials are seeing the benefits of early identification, the fact that these children are being main-streamed, that they're able to communicate, that the opportunities in terms of education, occupation, or life profession are really changing. The long-term benefits of newborn hearing screening are just incredible. And other things in terms of who benefits from it, is it the education system, the health insurance system, but as health insurance companies are seeing that the costs are quite low for early identification, in the long run they may be saving the long-term costs. More and more of them are supporting legislation or just their own insurance company reimbursing. We've made sure in Rhode Island, we have a hearing advisory committee, that we have representatives of third party payers and Medicaid on that committee, so that they become more and more aware of the issues involved with the costs of newborn hearing screening.
Faye: Now what should families do if their health insurance refuses to pay for this newborn screening?
Betty: That is a good question. There is additional data on some websites right now. For instance, Infant Hearing.Org, out of Utah, talking about some of the issues. But it's mainly the basic problem with infants who are on private insurance, EPSDT, that's Early And Periodic Screening And Diagnosis and Treatment plan, which is federally mandated, is suppose to cover newborn hearing screening. But it is currently not occurring in all states. I think we're moving more in that direction for this component of support for newborn hearing screening.
Faye: We will have links on our website for EPSDT which covers the Medicaid program in all states. In some states, the Title V Children With Special Health Care Needs program covers hearing screening, treatment and also helps people get more information about their health insurance.
Now, I want to find out how are the pediatricians involved in newborn hearing screening and what information do pediatricians and families get if the baby doesn't pass the hearing test?
Betty: Okay, this is a big initiative going on right now throughout the United States. Since this is a relatively new program, newborn hearing screening, it's really educating all of the pediatricians and primary care providers all about newborn hearing screening, diagnosis and intervention and how they need to work together collaboratively as a team, with not only the families but with other professionals in their community, who are going to be actually providing the services; the audiologist, the otolaryngologist, the educators, the speech language therapist. At least in the state of Rhode Island we're working on a lot of initiatives; having hospital grand rounds where we have a whole subcommittee working on the medical home and infant hearing, and how to provide information to the primary care provider. It's a big undertaking.
Many pediatricians who trained a number of years ago would have children come into or have children identified in their practice. Let's say when they were two, three, four, with mild hearing losses five years of age when they were being screened for kindergarten. Now they're getting infants identified in the first couple months of life. So this has necessitated that they really become aware of what the needs are and how to understand the families' concerns, the stresses that the family is going through. In terms of education of physicians as I said, things like grand rounds. We're also developing brochures in most of the states that are given out to families to explain about hearing screening. At Women And Infants hospital which is a tertiary care center, there is a booklet that goes out to all families in the pre-admission booklet and that talks about newborn hearing screening and what it means. We also give them a booklet in the hospital or if they come back for the rescreen. That's just being translated also into Spanish. We have on our cable network a five minute cable show on newborn hearing screening and why it's important and what it means to the family. So there are a lot of educational efforts going on for physicians, for early intervention and that's the other group that we're not accustomed to working with, what do you do when you have a three month old or four month old whose just been fitted with hearing aids? How do you work on language development with the family? They were really used to working with the child who was at least 18 months of age. So, that has changed dramatically.
Faye: We'll have some of those links on the website as well so people can get additional information. Now I'd like to hear from the parent speakers again about your experiences when you found out that your baby did not pass the hearing screening and the involvement of your pediatrician at that time as well as now. And Regina, could you tell us a little bit about Mikayla?
Regina: Sure. When I received the results of the hearing screening, I received them through Mikayla's audiologist. She was the initial contact. And in terms of the involvement with the pediatrician, basically we reviewed the diagnosis together and the pediatrician's office has really been a support system for us in terms of making sure that we are hooked up with early intervention and we have other services that are available in the state of Rhode Island for hearing impaired children. And they've just they've really just been very supportive in terms of making sure that we have, you know, the appropriate ear, nose and throat physician looking at our daughter very often.
Faye: Now exactly what did they tell you about her hearing?
Regina: The audiologist or the pediatrician?
Faye: The audiologist first.
Regina: The audiologist explained that she had a sensory-neural-hearing loss and explained the category that it was in which was moderate to severe, and basically, he broke it down pretty in-depth. They, you know, kind of told us where she stood in terms of her potential for speech, you know, and they were very general about it, cause like I said, we had no knowledge of this at all previous to the diagnosis. So, they just kind of told us where she would be and that she was kind of borderline as to what we could do. We could, you know, have her speak. We could also have her learn sign language. He said it was really up to us and it was a very personal decision, and they basically informed us to, you know, get a lot of information and do a lot of reading and, of course, hooked us up with Early Intervention right away and as well as the Rhode Island School for The Deaf.
Faye: Now was the early intervention specifically for children with hearing impairments or sort of a general intervention?
Regina: It was a general intervention, but we did get a speech pathologist who was our service coordinator. So obviously, she had experience with hearing impairments. But as Dr. Vohr said, they really didn't quite know exactly what to do with a three month old in terms of speech development. They gave us a whole bunch of information, but in terms of providing any type of direct service, that was it was pretty new at that point in time, obviously for them. They were still kind of learning themselves three years ago so ...
Faye: And then how was Mikayla's pediatrician involved in all this?
Regina: She basically, like I said, was very supportive, she made sure we had all the resources that we needed. Kind of went over the diagnosis again and made sure that we were in much contact with the audiologist, basic things like that and making sure that we had the referrals to the otolaryngologist that we do have.
Faye: And did your insurance cover all of this?
Regina: Yes. Well our insurance covered the otolaryngologist, obviously the pediatrician, the audiological services were covered. Early Intervention is a state program so that we did not need to utilize our health insurance for that. In terms of amplification-no. The health insurance did not cover the hearing aids-no.
Faye: So how did you get hearing aids covered?
Regina: Early Intervention paid for one of our hearing aids and the other one, we obtained through a group called the Shriners Organization, in Rhode Island,they purchased the other one for us.
Faye: That was good that you were able to find a solution.
Regina: Yes, yes.
Faye: Now Jennifer, we'd like to hear about your experience of finding out about Max's hearing impairment, and also about working with his pediatrician.
Jennifer: Okay. We were, like I said, we were told right before we left the hospital and our pediatrician was there and the head nurse were the ones that told us that he did not pass the screening. They told us then to wait six weeks and they would refer us up to Chicago to have an AABR done that would actually diagnose this, cause the newborn hearing screening is just a screening, it's not a diagnostic test. So we would have to go for the diagnostic test. And that was really the only part our pediatrician played in this whole ordeal. We didn't want to wait six weeks. That seemed like forever to us. So we actually went on our own. My brother-in-law is a physician and he knew of an ENT who had an audiologist in his office that did AABR's on infants. So we were able to go up the next day after we left the hospital and have that taken care of. Our pediatrician, still to this day, well I shouldn't say to this day, but before Max had his cochlear implant, he still swore that he was not deaf. So I'm really kind of glad that I didn't latch on to her too much, because it wasn't her specialty and you know she would say;" he seems like he hears" and things like that. I think sometimes if you're not an aggressive person, you tend to hang on every word that your pediatrician says, especially when it's your first child. She'll admit, she says," I don't know anything about this stuff". We sent her all the reports. She gets all the information for his charts and all his testing and everything he has done. But she really doesn't, she's not involved in any other way.
Faye: Okay, now has your health insurance covered Max's diagnosis and treatment up to this point?
Jennifer: Yes. Well, they did not pay for the hearing aids. Childrens Memorial in Chicago, that we went through, had given us loaner hearing aids to use, so we didn't have an expense there. But they paid for everything else. They did pay for his implant surgery and his implant itself. They've really been excellent about paying for everything in a timely fashion.
Faye: Does he participate in Early Intervention or any of the other government programs?
Jennifer: Yes. He does participate in Early Intervention.
Faye: And what type of services does he receive?
Jennifer: Well he has speech therapy, and he also goes to school in St. Louis every other week for three days.
Faye: Okay, and they referred you to this school out of state?
Jennifer: No, actually everything we kind of pioneered ourselves. We found this school on our own and were able to have them pay for it. They were really good about that, because our town here doesn't supply any type of schooling for him, he was so young. Now these newborn screenings are going to prompt early services for children because a lot of towns don't have services for children under three, because they're not accustomed to getting them diagnosed until they're two. So they really aren't familiar with having these children come in that are newborns and infants, and having services ready for them. So we found this school that does cater to children his age, and then it's the type of thing that if they don't have it in your town, then they have to pay for it where you find it.
Faye: This is also a state and national issue. I know that in our state, there are counties where there are no teachers who have certification for education of hearing impaired children. Maybe Dr. Vohr can tell us how common that is on the national level, about a shortage of qualified professionals.
Betty: It is very common right now. There is a shortage of all of the different therapists mainly because children usually weren't eligible for these services because they weren't identified until they were in, let's say pre-school or school, so it was supported by the Department of Education. Now it's often under Early Intervention's jurisdiction and services are not available. There are just not enough professionals and nationally, it is known that there is a shortage. When you think of states, large states that have birthing hospitals spread out over large geographic areas, if you get a child identified in a more remote area, there is a tremendous problem of trying to get outreach services, Early Intervention services for that child.
One of the issues with reimbursement for hearing aids, when we became aware of it in our state, that some of the families weren't quite eligible for Shriners and yet they couldn't afford to pay for it themselves. We now have sponsored by the Department of Health a loaner hearing aid program, which is for families who seem to fall between the cracks. Those loner hearing aids can also be provided for families that, let's say, have an insurance that has a real delay in approving for the hearing aids. We're really working on this because some of the insurance companies would take six months or more to approve the hearing aids, and here we are saying they should be amplified and provided with information and intervention rather in the first six months of life. So, having these loaner hearing aids is helpful.
Secondly, there was a new bill passed in Rhode Island within the last year which relates to the reimbursement for hearing aids. It's a small amount, $400.00. In fact, it's it's not a very generous bill. Insurance companies are asked to provide a rider that families can pay for, which will then pay $400.00 towards a hearing aid. So that's still incredibly limited for families where we know that now the digital hearing aids are costing $2000.00 or more.
Faye: I know that my daughter has been pleased to discover that now they make special small size hearing aids for babies that they didn't have when she was little.
Betty: Right.
Faye: They have much more advanced technology now, and hearing aids do a lot more.
Now to backtrack a little bit, could you please review for us who are all the different professionals that are involved in helping babies with hearing impairments?
Betty: Oh wow. That's a big job. There are so many. That's why they really have to work as a team, and as you heard in some of the reports, for instance from Regina and from Jennifer, that the concept of the medical home is still evolving. The medical home tries to ensure that services for families are not only family centered but comprehensive, continuous, coordinated. And that certainly means that all of the different professionals involved need to be knowledgeable number one, need to know how to link with one another.
First and foremost, aside from the primary care provider and pediatrician, I believe, is the audiologist because the audiologist is the one who is initially going to make the diagnosis on that child and hopefully share that information with the family in a realistic but sensitive way. Have the information for the family right at that time about what are the next steps, sharing that information also with the pediatrician, hopefully getting on the phone with them and discussing it with them and being available to that family. Other professionals that need to be involved early on could involve, l should involve, the otolaryngologist. The otolaryngologist would also look for medical or surgical findings that might need to be addressed by the otolaryngologist. The geneticist, in some cases. In Rhode Island, for instance, we are recommending a genetic workup for families, if they are interested in whether the parents might be carriers and what the risk might be for additional children to have hearing loss and to learn whether their child perhaps has some type of progressive hearing loss or whether it might be associated with other findings that have later onset, for instance vision impairment. Then, of course, very critical are all the different interventionists and therapists that are going to be working with the family. The coordinator for the Early Intervention, the educator of the deaf and hard of hearing, whether it's oral therapy, auditory-verbal,total communication, cued speech. You need to have the experts that the family wants to have involved with intervention for their child. I hope I haven't left anyone out of this linkage here. If you moms can think of someone I've left out, I'd appreciate your input here.
Regina: I think you've pretty well covered it.
Betty: Okay. But this is the group of individuals as a whole now, that is really learning about working with infants who are younger and younger. I think the earliest infant fitted with a hearing aid that I'm aware of, was actually in Rhode Island where it was the second child in a family and there had been a complete workup. So, we knew the cause of the hearing loss. When their second child didn't pass the screening, they wanted to have the rescreen and the diagnostic all done by 48 hours of age and ear molds were poured at that time and at seven days of age, that baby was in hearing aids. This is a family that really definitely advocates for their children and really pushed for all of this. It certainly was out of the norm. But they had seen the incredible progress made by their first child who had been identified at two and a half months of age and diagnosed, and they wanted this to occur for their second infant with hearing loss.
Faye: Well, that's wonderful. Again, I want to ask the question about insurance covering the range of services that babies will need, with hearing aids and ear molds, speech therapy, education from a teacher of the hearing impaired- which is both for the baby and the entire family, using types of assistive technology, among other services. I know we've heard recently, and it will be on the website, that Maryland has passed a law mandating private health insurance to cover hearing aids, and they also have a hearing aid loaner bank for children to access while they are being diagnosed so they can get a hearing aid right away. Do you have some more information about this?
Betty: Well, I really admire the steps that are being taken in Maryland and they are ahead of most states in that regard. There are a number of states, now I know Texas, has a really good program with a loaner bank right now too, through their Early Intervention program. And as I said, Rhode Island has a loaner bank. In terms of reimbursement for private insurance, we still have to move a long distance to get what's really needed in all of the states and this really should be something that we need to advocate for and make our legislators aware of, on a state level and on a national level. It's inadequate at the moment in most states.
Faye: I know I hear from many many families that they have great difficulty in getting insurance to pay for speech therapy, and I would like to hear from Regina and Jennifer if they have had difficulties getting insurance to pay for speech therapy for their children.
Regina: Actually we we did have speech therapy paid through our health insurance for Mikayla from the age of nine months to three years. And it actually wasn't that bad. The only thing was that we had to keep getting referrals, but that wasn't an issue. Since she has turned three, the health insurance does not pay for it anymore. She's now followed through the school department. But I have to say, that in terms of speech therapy, we really didn't have a problem.
Faye: Now did your insurance tell you that because she was three years old that they were cutting off speech therapy, or was that your decision or what happened?
Regina: No, no. They told us that when she turned three, she was no longer going to be covered under the health insurance for therapy. So, we knew that from the beginning.
Betty: Now, I don't know if that's unique for Rhode Island, but I do know that at age three for any type of speech therapy or educational intervention, it's expected that the school department take over those costs, effective at 36 months.
Faye: I do know that many children need therapy services beyond what is available in school, because the school meets what is educationally necessary, and children often have additional medically necessary needs that require therapy outside of the school setting. This is often a point of controversy for a lot of families, for speech therapy and for other types of therapy. Now Jennifer, I know Max is not yet school age, but is his insurance paying for his speech therapy at this time?
Jennifer: They were paying for it with no problem, and like I said, we live in a small town. I believe it was our Early Intervention coordinator who did not explain to us that Early Intervention would pay for the speech therapy. And so now they are the ones paying for the speech therapy.
Faye: And what will happen when Max turns three?
Jennifer: When he turns three, he will go to a school that's in our state, but it's about an hour and a half from our home. We haven't really settled all that yet, because the school district should pay for him to go to this school, because they don't have a equal type of school, an equal type of education for him here in our town. So that we're not sure how that's going to get paid for yet. But the speech therapy, I would think that the school district would be responsible for when he turns three and then we would pay privately if we would like him to have additional speech therapy.
Faye: Will health insurance pay for services for him after age three?
Jennifer: I don't know, because we've stopped billing our health insurance for the speech therapy as of right now. So I don't know if we'll have to go back to that. We haven't really looked into all that yet.
Faye: These are very very complicated issues for families.
Jennifer: And obviously, if you're not on top of it, then really probably a lot of families don't use all the resources and all the information that they can, or take advantage of everything that they can, cause it's so hard to follow everything, plus take care of your child, and make sure that they are getting to their appointments and doing all these things. It really is complicated and tiring from a parent's point of view.
Betty: I see another challenge in that Max is going to be spending it sounds like three hours a day in a bus going to school?
Jennifer: No, actually I will drive him to school. It's about an hour and a half away from our home.
Betty: It's still a lot of time spent in transportation.
Jennifer: Oh yes.
Betty: And hopefully in the future, we'll have services more evenly distributed for children with hearing loss.
Jennifer: Yes, I hope so. The bad thing is that this school is excellent and I don't mind the drive. It will be well worth it. But if there would be another school that opened up closer, the bad thing is I'm not the type of person that wants to be the guinea pig. You know what I mean? I'd like to go somewhere where it's already established and everything; so I'm kind of hoping that they don't do anything new until we get through that school. He'll go there until kindergarten. Like this school in St. Louis, we could probably go somewhere closer, but it's a great school and I've seen the kids that come out of there and I really like the turn-out there. He does really well there so you just make sacrifices.
Betty: Right.
Jennifer: You have to go that extra mile. I mean it's not my favorite thing to do every other week, but it's something that is part of our life now.
Faye: I'd like also to mention to everybody that we will have resources on the resource list for this webcast about various parent organizations related to children with deafness. With hearing impairments, it's really important to connect with other families and find out what they're doing, and also with adults who have the same disabilities where you have a lot of very proactive organizations and good information. I know in the school district where we live, we have the Regional Hearing Impaired Program, a cooperative of 50 school districts. Over the years, because parents have requested more varied types of services for their children, they have really expanded the menu of services that they have available and it was brought about by the families. So, I think it's really important for people to get information from a variety of sources, including people who have children and adults at various points of the life span. There's nothing like benefitting from other people's experiences.
Betty: Right, absolutely.
Faye: Now, do either of you have your children in the Title V Children With Special Health Care Needs Program in your states?
Regina: I've heard of it but I'm not too sure.
Faye: This is a federal-state program, you know the federal name is Title V Children With Special Health Care Needs. It has a different name in each state. Each state provides a different menu of services for children who have different medical diagnoses. In Illinois it's called the Division of Specilaized Care for Children; and hearing impairments are one of the diagnostic categories that they do cover. I know that it is not the same every state. Maybe Dr. Vohr can tell us a little bit more about that.
Betty: Actually, I believe that children in Rhode Island are eligible for preschool special education services, if they require specialized education, and certainly children who are deaf or hard of hearing are eligible.
Regina: Okay, actually yes, my daughter is eligible for that and we are we're in the process now of developing that plan, the Individual Education Plan (IEP), with our town for her preschool placement, as well as continued speech therapy at this time.
Betty: Right. The family develops an IEP, Individualized Education Plan, and it outlines all of the services that that child needs, and that the family is in agreement with, and supports, and then that plan must be facilitated by the Department of Education in their local school district.
Faye: Jennifer, is Max in the Title V program in Illinois?
Jennifer: No.
Faye: And did you know about it when he was born?
Jennifer: No. No I did not.
Faye: We have a link on our website; and they do cover hearing impairments in Illinois and some other states. It's important for people to know about all possible resources and explore them.
Betty: Right.
Faye: Are there any other government programs that could cover services for babies who have hearing impairments Dr. Vohr?
Betty: At the moment, I am not aware of that.
Faye: So now we've talked about Medicaid, we talked about Title V, we talked about Early Intervention and special education, we talked about public health.
Betty: Right. It's the state health departments who may develop these loaner hearing aids programs which families can avail themselves of. But aside from that, I think we're dependent on the third party insurance and Medicaid for HMO reimbursement.
Faye: I would like to tell all families and physicians that even if they get an initial denial from insurance for hearing aids for a baby, if it's recommended, let the medical professionals know, let the pediatrician know, because there are other resources out there and it's important for babies to get hearing aids and intervention as quickly as possible.
Betty: Oh absolutely. And hopefully, in the states, as they begin working with their service coordinator for Early Intervention, those individuals will be knowledgeable about what all the alternative options are for families. So that, let's say number one doesn't work, then you go to Shriners, you go to the hearing aid bank, etc. and just make sure that that child is amplified as soon as possible. Get their hearing aids as soon as possible and then get their permanent hearing aids as soon as possible.
Faye: Now we're getting ready to end the webcast. So I'd like to ask you the question about what are future directions for newborn hearing screening?
Betty: Well, certainly, the goal right now in the United States is to have all states providing newborn hearing screening for all infants, which has not yet occurred. I think the new directions are going to be increased automation of the methodology that is out there. Very portable units that could be used in outreach for small hospitals around the country. Also developing data systems to link the data so that Early Intervention, audiologists and newborn screening programs are linked in databases to insure that all families receive optimal services and just receive the services that they're suppose to be getting. In our state, we're also going to be linking newborn screening with newborn metabolic screening. Just because we do know that a certain percentage of children with hearing loss do have other developmental issues and if we can get all of this data linked and have a more state-of-the-art automated system for screening and diagnosis, we'll be able to make much smoother seamless transitions for families in the future.
Faye: Well we will look forward to hearing more about that as we continue to share information about it. Now Jennifer and Regina, I have double questions for both of you in closing. What advice do you have for other parents about having their baby undergoing newborn hearing screening, and what advice do you have for medical professionals and hospital staff about helping families when their baby doesn't pass the hearing screening? Regina, would you like to go first?
Regina: Sure. Well, the advice for other parents about the newborn hearing screening, I mean I would definitely push for increased knowledge of that, in terms of, it doesn't hurt and is non-invasive and it obviously is of great benefit in the long run if in fact there is a diagnosis, you know, as part of the newborn hearing screening. In terms of medical professionals, I think, that probably I guess just having all of the medical professionals come into a full circle in terms of the otolaryngologist, pediatrician, the audiologist and speech pathologist making sure that they are in good contact with each other and that everybody's on the same page and that everybody does have the accurate and appropriate knowledge of each individual hearing impairment, because hearing impairments fall under a big umbrella but you know they do break down in terms of mild or moderate, profound and each one of them does require a different path, I believe, in terms of the therapies that need to be provided. It's very individual and I think having a full circle would really be a good thing to do.
Faye: Thank you. And Jennifer.
Jennifer: Regina pretty much covered everything, but as far as advice to the parents, like Regina said it's extremely important that it does not hurt your child and this can be a very helpful thing. It can practically save your child's well being, I guess I would say that's how we feel now. If we didn't have it, we would really be at a loss. And also for the professionals, that they are sympathetic and are able to answer all the questions. It is very overwhelming when you are told when your baby is two or three days old that they didn't pass their hearing test. Sometimes it doesn't amount to much I mean at our hospital here, Max has been the only one who has actually failed or had any sort of hearing loss from his results of the screening. But you never know, I mean, even if you're not a hundred percent sure, at the time in the screening when they say he didn't pass it, you don't know what it's going to lead to. It's so scary. But just make sure that they will always be able to answer all the questions and answer the questions in easy terminology and things that parents understand cause it's extremely overwhelming.
Faye: The other thing that I would share, is that professionals need to know and share with families, that there are many different philosophies and approaches to educating children with deafness and hearing impairments, which include sign language, oral approach, total communication, cued speech; and they are all successful for different children and there are lots of resources out there and there is lots of help out there, so please keep asking the questions and be connected with the pediatrician, and things will work more smoothly.
Jennifer: That is a good point to be up on all the latest things. I mean Max is profoundly deaf and they had us watch a video when they told us. That video was completely geared for sign language, which is fine, but we didn't know there were other avenues to take. And it's a little overwhelming when you've never even met a deaf person and to be told your child had not passed the hearing test and be shown a sign language video. It's like this is your only avenue. But there are so many different ways we could have looked at it. It is better to have more than one choice when you're told something. When you are told something and given only one choice, then that's all you feel you pretty much have. They need to be up on the latest things and know that there are different avenues that parents could take.
Betty: You have made an excellent point. It's unfortunate, but some Early Intervention programs can be biased towards one method or another. I think they are gradually turning towards an awareness that they have to provide all of the options to families because it is a very individual decision that is made by each family.
Faye: And families also need to know that the decision can be revisited and changed over time, and as the child gets older, the child also has input into it.
Jennifer: Oh, absolutely.
Faye: We have to become aware and educate people in public health and in insurance, so people have access to coverage and services for things, as well as education and social services and medical services to continue to work together.
Well you're all extremely knowledgeable, and I'm very, very grateful for your willingness to share your experiences with us. We learned a lot today, and now we really know a lot more about newborn hearing screening, medical management, and its impact and involvement with the families.
We have a lot of helpful resources on our website and will continue to communicate on this topic. Thank you for logging onto our webcast production. We're really interested in your comments and questions regarding the webcast and we invite you to contact us. Our email address is cade@uic.edu. Our telephone number is (312) 996-2233 and our fax number is (312) 413-0367. We are located in Chicago, Illinois and we're on Central time.
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End of interview.