Karl White:
Yes. I'll use this mic. Okay, I'll say that all over again. So it is wonderful to have all of you here. And our goal for this afternoon in the next hour and a half, is to provide a high-level overview of Early Hearing Detection and Intervention programs, talking a little bit about where we've come from, what the current status of those programs are and who the key players are, and then to talk to us briefly about some of the things that may happen in the near future. Our goal with that is to provide you with enough background that you'll be able to gain more from the sessions here at the EHDI conference, and be able to tie those pieces together a bit better.
We've assembled a wonderful group of presenters, who will give short presentations about different aspects of EHDI. And then we'll have some time for questions and answers at the end. And we promise to get you out of here in time to attend the reception at six o'clock, which is just next door. So Early Hearing Detection and Intervention programs have really been around in full force, or just about the last 25 years. Permanent hearing loss at birth is something which occurs more frequently than any other condition we can screen for at birth. If you take a random sample of 10,000 babies born in this country, then the incidence per thousand would be about 30 for children with permanent hearing loss, compared to 11 with Down syndrome, or one with phenylketonuria.
So hearing loss is something which occurs much more frequently than many other conditions that we hear a lot more about. If you look at the children who are identified in those newborn hearing screening programs, it's important to recognize that they are a very heterogeneous group of children. These data come from the Centers for Disease Control that are reported by the state EHDI programs that are located in every state. So about 14% of those children who are identified in EHDI programs will have bilateral profound hearing loss, compared to almost 40% who will have unilateral hearing loss. And then a fair number of children at all the levels and lateralities in between. So when we talk about deaf children for example, it's important to keep in mind that this is not a single homogenous group of children. There's a lot of different levels of hearing loss, and that a good EHDI program is structured in a way that will help take care of all of those children.
Now universally, newborn hearing screening, I said it's been around for about 25 years, but it was thought about a long time before that. People have been working for well over a hundred years to identify children with congenital hearing loss. And we'd like to introduce you briefly to a couple of the people who were instrumental in getting them started. This is a video of Marion Downs that appeared on the Walter Cronkite News Hour about 1970. How many have ever heard of Walter Cronkite? Oh, a few people. So he at one time, was talked about as the most trusted man in America, and he did a special on early identification of hearing loss. And here's what Marion had to say. Come on, Marion.

Walter Cronkite:
Audiologist Marion Downs was among the first to recognize that whatever the cause of an infant's hearing loss, each waking hour, each day counts.

Marion Downs:
It is vitally important that they be identified early, early in life. And we think early really means at birth.

Karl White:
So Marion had been pushing for that since the 1970s, and we've made a lot of progress. One of the things that she did in 1969 was to establish a group called the Joint Committee on Infant Hearing, and you'll hear a fair amount about the JCIH at this conference. They are a group of people that represent about a dozen different professional organizations, such as the American Academy of Pediatrics, the American Speech Language and Hearing Association, the Alexander Graham Bell Association that make recommendations about how we should implement newborn hearing screening programs. And they've been making those recommendations since 1969, but at that point we didn't have the technology in place to really do a very good job. We've had Auditory Brainstem Response since the early seventies, and that was effective, but it was so expensive to do that it couldn't be used as a screening technique. Let me show you another clip from that Cronkite special, where that shows a baby receiving ABR at that point.

Walter Cronkite:
The technology to identify hearing loss in infants exists. New electronic instrumentation is revolutionizing this work. In particular, the Brainstem Evoked Response test, called the BER. A BER test, such as this one at Albert Einstein Medical Center in New York, can be conducted even while the infant is sound asleep. A test sound, a series of clicks, is played over earphones. By viewing the electrical signals picked up from the scalp show whether audio information is reaching the brain. A computer sorts the signals, and if there is a problem and tells the doctor where it is.

Karl White:
So as you can see in this video, it was on a much more involved process back then, than it is today. And that's why it wasn't possible to do it on all babies. Now, in the early 1970s to mid 1970s, people began using what they called high-risk indicators, to identify those children who needed the Auditory Brainstem Response. So high-risk indicators were things like a family history of deafness, certain childhood or infant diseases, congenital anomalies of the head and neck. And there was a list of about a dozen of those high risk indicators that were used to identify a group of about 10% of the birth population, and then to do Auditory Brainstem Response on those children. The problem with that approach is that only about 50% of children with congenital hearing loss had one of those risk indicators. More serious is that 98% of the children who had a risk indicator had normal hearing, so it just wasn't efficient to identify children.
It was better than doing nothing, but there were only a few programs that ever got off the ground, because they weren't very efficient. A third approach was to do behavioral screening, where they would use calibrated noise makers in a child's home, usually when the child was four to seven months of age, and try and identify which children had hearing loss. One form of that was the famous bang the pots and pans behind the child's head, to see if they turned to that. That didn't work very well either, so behavioral screening never took off. But then in 1978, this man, his name is David Kemp, was a British auditory physicist. He developed something called otoacoustic emissions measurement equipment. So he discovered that when a sound is introduced into the air, that if the air is healthy, it sends back what many people called an echo that could be measured. And you could distinguish using that acoustic emissions equipment whether babies had normal hearing or had a hearing loss. Here's what David said in an interview several years later.

David Kemp:
I've got the first otoacoustic emission machine to show you here. This was made in 1977. It seized what could demonstrate clinical [inaudible 00:09:27] for screening. And there's a little acoustic emission probe, and it was effective. We could demonstrate the emissions of healthy ears, and absent of from [inaudible 00:09:40]. And we imagined that people would recognize the value of this instrument straight away. And it's taken quite a long time, but you have.

Speaker 7:
Yes.

Karl White:
So this equipment evolved since that clunky equipment you just saw. And by the mid 1980s, there was equipment which was much easier to use. It's still built on that principle of otoacoustic emissions. Also at that time, Auditory Brainstem Response evolved to the point that it didn't have to bandage the baby, and make the baby look like a mummy in order to do testing. And they were able to do much quicker and more efficient testing with Auditory Brainstem Responses. From 1988 to 1993, Utah State University was funded by HRSA and MCHB, to conduct the Rhode Island Hearing Assessment Project, which was the first large-scale clinical evaluation of the universal newborn hearing screening. And the results of that study, which lasted over three years and screened about 6,000 babies was a national consensus conference by the National Institutes of Health to look at the pros and cons of newborn hearing screening, and to decide whether it was something that all hospitals ought to do.
This clip is a short video, an excerpt from a video that we developed to educate families in the pre-natal period about how newborn hearing screening was done. And this is what the equipment looks like today.

Speaker 8:
Sophia.

Speaker 9:
How can your baby's hearing be checked? Thanks to advances in technology, we can now check a baby's hearing shortly after birth. Your healthcare staff is concerned about your newborn's hearing, because 1 out of every 300 babies is born with hearing loss. Children who cannot hear clearly will often have trouble learning to communicate. That's why it is important to check or screen each newborn's hearing, using one of two safe, simple and painless procedures. Let's watch the example of each. One method is called OAE or otoacoustic emissions screening. In this process, a trained screener places a small earphone in the baby's ear that emits a series of soft sounds. The inner ear typically responds to these sounds by producing echoes, called otoacoustic emissions, which are analyzed by the screening equipment. Another method is called AABR or Automated Auditory Brainstem Response screening. In this process, the trained screener places band-aid-like sensors on the baby's head. As soft sounds are played into the baby's gear, these sensors analyze the brain's response to the sound. No matter which method is used, in a few minutes, the screening is finished and the result is displayed.

Karl White:
So with the results of the Rhode Island Hearing Assessment Project and several other studies done in Colorado, Kentucky, and Hawaii, the National Institutes of Health in 1993 held a conference in which they asked a panel of experts to look at all of the evidence about universal newborn hearing screening, and decide whether it's something that should be done with all babies. They concluded that all babies should be screened, and that that would be done most efficiently if they did it prior to the time the baby was discharged from the well-being nursery. Those of us who were involved in those projects thought that this would take off very rapidly at that point. Unfortunately, we were wrong. In 1993 when the Consensus Development Conference was held, about 5% of all babies were being screened. It took another 10 years to where we got to about 90%. Today, close to 99% of all babies are screened before they leave the hospital.
So we have made progress, but in those early days of universal newborn hearing screening, we put so much effort into deciding how to do the screening, who should do it, how often it should be done, and what time it should be done, what equipment should be used. There was a lot of very good work that went into making those decisions, but then we assumed that once the baby was identified, a miracle would occur, and everything would be okay. So we spent the last 20 years working on those other aspects to fill in those details. So we've learned that it does make a difference in how we do pediatric diagnosis, providing early intervention, establishing a medical home for those babies, managing the data, so we know who's been screened and who hasn't, and helping them to come back for needed follow up, doing program evaluation. And perhaps most importantly in my opinion, creating family support programs so that those families, most of them who never expected to have a deaf baby, would have the kind of assistance and the resources that they needed to know what to do next.
Over the last 15 to 20 years, we've established an expectation that all babies will be screened by the time they're one month of age, that they'll receive a hearing evaluation, if they don't pass that screening before three months of age. And that they will be referred to and enrolled in an appropriate early intervention program before six months of age. This is often referred to as the 1-3-6 model, and it is the goal that EHDI programs are continuing to strive to achieve. There are some people now suggesting that we should talk about 1-3-6 weeks, because there's really nothing in the auditory system of a baby that would require us to wait until three months of age to do the diagnosis. So the sooner that we can do that, the better off we'll be. We've seen dramatic decreases in the age of which children with hearing loss are identified. So instead of identifying most children at three to six months of age, we're now identifying babies at an average of two to three months of age.
And that has been possible, in part, because of funding support from HRSA, the Health Resources Services Administration of the Department of Health and Human Services. So HRSA provides 59 grants, a grant to every state and territory in the US, to help them achieve that 1-3-6 milestones. They also provide funding to universities that have what's called a LEND program, which is Leadership Development and Neurodevelopmental Disabilities, and to focus on pediatric audiology. And then they've also funded cooperative agreements to three centers that make up the EHDI National Network. So one of those is at Gallaudet University, the Beacon Center, that focuses on implementation and change. The second one is a cooperative agreement to Hands & Voices that focuses on family support. And then a third one, to the American Academy of Pediatrics, to focus on providing education.
Those three centers work together to provide support to those 59 programs, and all of the other stakeholders, in order to bring protection and intervention. The Centers for Disease Control also provides funding to 38 states to help them in developing their data management procedures. So those funds are right now congressionally authorized through 2029, and we expect that they'll be continued after that as well. So just the final concluding comment from Marion Downs, before I turn it over to our other speakers.

Marion Downs:
You remember that screening is nothing without good follow up, and a good intervention program. One challenge comes after the other. I like to think of this forty-year period of when we were trying to get newborn screening in. I like to think of it as similar to the work of Mahatma Gandhi's work in India. And I want to read you what he says, and I think it's pertinent to all of us. "First they ignored me, then they laughed at me, then they fought me, and then we won."

Karl White:
So we hope that your attendance here at the EHDI conference during the next two days will provide you with the information you need to be become part of what Marion was talking about. We have a long way to go still in making early hearing detection and intervention programs as effective as they need to be. And this quote from Helen Keller, I think sums it up, that, "The world is moved along, not only by the mighty shoves of its heroes," and I've introduced you to a couple of those in Marion Downs and David Kemp, "but also by the aggregate of tiny pushes of each honest worker." In other words, by all of us. And we all have an opportunity to improve Early Hearing Detection and Intervention programs. And we're going to offer you some suggestions and some resources of how you might do that, and then look forward to working together with you in doing that. So we'll turn the time now to Linda, to talk to us about family support.

Lisa Kovacs:
Hello, and welcome to EHDI Conference. I'm Lisa Kovacs. I'm the director of programs for Hands & Voices Headquarters, and I'm also on the Family Leadership and Language and Learning, or the FL3 Center, that I will stay at a leadership team. And I really appreciate the opportunity in the EHDI 101 to talk to you about the integral role of family support. I couldn't think of a better way to convey the significance of family support in the EHDI system, other than sharing a quote from a family. This quote comes from some research that was done out of Western University, that looked at a family's experiences, who received family to family support.
The mother shared, "I was hanging in a bit of a limbo zone. So it was like, we know there's something here, we just don't know exactly to what extent it is. I was an emotional wreck every time I had an ABR appointment. We had several of those appointments to get the complete picture. These appointments were really hard on me. It feels like you're reaching into the darkness, and you don't know what exists out there, what it's going to be like, and you're desperate to find a bridge to something that will help you feel more anchored. Once I connected with another parent, it kind of gave me something to hold onto. It gave me a sense of grounding, and then anchoring within this new normal for our family."
So I think that's why Karl mentioned that family support is a piece of this EHDI system, and a really important piece. My introduction to the EHDI system was 24 years ago with my son, who was identified as deaf or hard of hearing. He and his twin sister were born at 26 weeks gestation, so very, very early. They spent 88 days in the NICU. When I first heard about EHDI, I thought it was just a program in my state. And then I learned that EHDI is an entire system. My family's EHDI system included audiologists, neonatal staff, ENT, otolaryngologists, developmental pediatrician, pediatrician, EI providers, speech language pathologists, occupational therapists, developmental therapists, a deaf mentor. I had family support from a family support organization, and [inaudible 00:22:40] families who were walking along this journey before me, and alongside us as a family. So you in this room are probably in one of these roles. So we are all in this EHDI system together.
For many families, the timing of when they enter the EHDI system, just like with my own family, is a time that they typically are having many new experiences. Some parents, it may be their first child, so they're new to even becoming a parent, let alone maybe not have never have met that person who's deaf for hard of hearing. There's so much information that's being thrown at families. And they're just trying to get maybe through the next day. They've had no sleep. You all can imagine this, if you're parents yourself. And then there's this huge emergency to make sure that we're making the decisions that are going to work for our child and our family, so that we can get to those language acquisition outcomes that we all know is so important. I recently heard a story from a mom on a virtual meeting, that shared that looking back on her journey, she said that she was so stressed during this early time with her child that she had really interfered with the bonding that she had with her child.
She said she struggled with just the simple pleasures of parenting her newborn baby. She was highly resourced. So because of that and me sharing a story, I want you to think about families who aren't highly resourced. So this mom was highly resourced, really had some disruption in bonding with her own child, because of all the new information that she was experiencing. So think about the families who are from certain populations, the additional barriers that they may face, and the need for support that they have. This is why family support is critical in the EHDI system, and can really make a difference in the outcomes of the families and the children that we serve.
Families in the EHDI system are diverse, and the decisions that they make for their children can be very complex. Families need the support of all of us to find what's going to work for their child and family. Access to comprehensive and coordinated family support increases the family's knowledge. It improves the child and family wellbeing. It empowers the family and ultimately promotes families engaging in language development for the newborn. I'd like to recognize Dr. White, Karl, for his very early and ongoing commitment to family support being an integral role in the EHDI system. As you can see from this slide, families need the support of all of us to engage in the EHDI system and support them.
My journey in the EHDI system first started, I was a parent, like all the families that we serve today. And I really got into it, because I thought, well, if I get involved, I'm going to be able to help my own son. And then over time, after my family settled in, and we were doing well, I realized that I really wanted to help families, other families. And then eventually, I started working at the systems level. And I wanted to improve the systems that were serving families like mine. So wherever a family might be, whether they're just getting started with their own family, they're supporting other families, or they're working at the systems level, which you will see many families at this conference who are now working at the systems level, we need to make sure that we're supporting them in whatever stage they are in their engagement in the EHDI system.
Hands & Voices has been a partner in a leading family support efforts in the EHDI system for many years. Hands & Voices was first established in 1996. We're a parent-led, parent-driven organization with 44 approved chapters, and 4 provisional chapters in the US and Canada. We are a diverse community, and we support a family's right to make decisions that work for their child and family. We believe there's no one communication or language path that works for all children. Families need the support that increases their knowledge, leading to empowerment, and child and family well-being. Hands & Voices has been the recipient, as Karl mentioned, of the FL3, or the Family Leadership and Language and Learning Center. And we've been the recipient of that funding since 2017, when the FL3 Center was first established. We are a part of a network of TA centers, as Karl mentioned, the other two TA centers. And we are here to support EHDI programs, and also all of you in this room.
And as I stand up here on the stage for family support, we're here to support you in any of your family support, family engagement and family leadership goals that you have, no matter what goal you're setting here today. I'm sorry, I think I might have... Okay. We're okay. Yes, I have the right slide up. Okay, so we are here for you. And I just want to close with one final family story, because I have lots of them. I've been doing this for about 20 years now. So my son always thinks that my job is all about him, and it really isn't now. It's all about the other families that I've served. There is a family that was sharing how she received a phone call from her son's teacher. He was a fifth grader in elementary school. This mom's here at this conference today. And she said that she looked back on her journey, and she was so worried in the beginning.
And he's in fifth grade now, and she gets a phone call from this teacher that says, "Hey, your son was the guest reader in our kindergarten class today. And he was so very, very proud to be the guest reader, and he was selected to be the guest reader, because in his fifth grade class, he was the top reading student of all students in the class." The deaf student was the top reading student in the entire class. So that's what we all need to strive for. We need to strive for these really positive outcomes for our deaf and hard of hearing children. And with that, I'm going to turn it over to Linda.

Linda Hazard:
Good afternoon, everyone. I'm Linda Hazard, and I'm not going to stand behind the podium, because you will not see me. With my height, I'm always disappearing behind there, so I apologize. I'm the program director and the coordinator for the state of Vermont, and I have been in my role for the past 16 years. So I want to talk to you a little bit about EHDI programs, and the current funding for those programs. So EHDI state and territory programs, first of all, who are we? So as Karl mentioned to you earlier, we are from the 50 states in nine territories. So there's one of me in every state and territory. The EHDI federal legislation currently that's in its birth to 3 years of age. And grant funding, as Karl mentioned, is from both HRSA, and from the CDC. Some states have additional funding, but many, many states have only the HRSA and the CDC funding to support the programs.
So the EHDI program roles and responsibility, what are they? So they're tracking and surveillance. So ensuring that we screen hearing of all infants born in our state by one month of age. So a statewide program that children who do not pass a hearing screening are diagnosed by three months of age. And that in those situations, we collaborate very closely with pediatric audiologists throughout our state, and entrants into early interventions. So we collaborate with our Part C and non-Part C providers to ensure that those children who are diagnosed as deaf, hard of hearing, or deaf-blind are enrolled in early intervention by six months of age.
So the importance of collaboration. State and EHDI territory programs work to improve screening programs, diagnosis, referral to early intervention. Family support is a key part of our programs. Additionally, periodic screening, although we generally do not have authority over the entities who provide some of those services. So what's happening right now with some of the programs that we're working with? So early intervention. We are working on language and developmental assessments for children who are enrolled in early intervention, that are deaf, hard of hearing, or deaf-blind. Family engagement, so family-based organizations. You heard from Hands & Voices a few minutes ago. Family Voices is another option of a family-based organization. And one of the key components of EHDI programs is family-to-family support. We also monitor newborns who have high risk factors, to ensure that they return for follow up screenings at the ages recommended by the Joint Commission on Infant Hearing. Deaf and hard of parent mentor programs, family retreats and parent professional trainings.
I'll just stop here for a minute to say, one of the most touching times I've had in my career has been working with the Care Project and a family retreat, where we brought families together for a full weekend, providing child care during the time parents had time to talk to each other. We had some professional presentations, and really bonded with those families. Another one was a trauma-informed and professional workshop in a holding space that we held for our professionals and our families, again, bringing together all of us, to work collaboratively together, to support children who are deaf and hard of hearing.
So continuing on the collaboration, all of our states and territories have websites. And we need to develop those and change those as resources change, as we learn more about EHDI programs. We often play a role in emerging initiatives. And one of those emerging initiatives is congenital CMV. So screening of all babies who target screening, who do not pass the hearing screening. And then discussions about universal screening for CMV. And states are working on those initiatives at this time. Early periodic screening for children birth to 3 years of age. As Karl mentioned earlier, about 1 in 300 babies born is diagnosed with some type of hearing loss. But in addition to that, there can be three to five more infants per thousand that are diagnosed with hearing loss between six months of age, and kindergarten age.
So one of the new initiatives that we have is to begin looking at, how can we screen children at ages one, two, and three, to identify those prior to progressive hearing loss. EHDI advisory councils. States should have a state or territory advisory council, and also family communities that can review resources, give important information to EHDI programs about how to make those resources more effective for families. So who else supports EHDI programs? This is a long one. Directors of Speech and Hearing Programs in State Health and Welfare Agencies, often known as DSHPSHWA representatives serve on national committees, including the Joint Commission on Infant Health, as well as other committees, such as Parent Choice Committee, Health Equity Communities.
So there's a lot of important work being done by DSHPSHWA. It's also the voice of EHDI, and a very valuable reward to be involved with. We also have the National Center for Hearing Assessment and Management, fondly known as NCHAM. And NCHAM has led the EHDI program initiatives for many, many years. And there are lots of support on that website for you, and resources to look at. The National Equity Network, which Karl also mentioned, includes the Implementation and Change Center, the Lincoln Center, the Family Leadership and Learning Center, the FL3, the Provider Education Center, PEC. And we are very grateful for the Family Leadership in Language and Learning led by Hands & Voices.
So this is one of my favorite pictures. Sorry. It's maple syrup season in Vermont, and we also have to have our twins in the bucket. So how can you partner with your state territory and EHDI program? Reach out to your EHDI coordinator. Find out who they are, and they will be happy to talk with you, involve you in how you can partner with them on projects, such as the family committee, or providing workshops. Attend your state stakeholder meeting. We used to have the state stakeholder meeting, but many states have gone to having stakeholder meetings during the year, or shortly after the EHDI Conference. Understand the issues in your state. And this is one thing I will say, that Karl White has said for years, and he's right. If you don't want an EHDI program, you don't want an EHDI state program.
So we are all very different, even though we have the same initiatives. Participate in state level advisory councils, participate in learning communities and retreats, and share their opinions, because they're important to us. It's how we move EHDI programs forward. And I think we're doing questions at the very end, but thank you so much for your time and attention. And I'm going to pass this on to Alice.

Allison Sedey:
Good afternoon. I'm here to talk about the I part of EHDI, so intervention. And just interested to know how many people in the room, raise your hand, if you're either a speech pathologist, a teacher of deaf, an early interventionist of any sort. Okay, so we have... Good. All right. Good group. Well, that's the area that I work in, and that's what I'll be talking to you a little bit about today. So I'm Allison Sedey. I'm at the University of Colorado in Boulder. And my work is in supporting EHDI programs and early intervention programs in the language assessment, and collecting language outcome data. So what is early intervention, for those of you who aren't as familiar with it? Early intervention is really all about working with the family, the parents, the caregivers, extended family, grandparents, and providing them with the resources and supports, to inform them about how to enhance their child's development.
So coming from a speech pathology background myself, I was used to previously working with the person who had communication difficulties, or was trying to enhance their language. But when you think about the early interventionist, it really pretty much, most of the time, any sort of a speech pathology interaction or developmental intervention interaction before somebody's in school, is going to be maybe at most once a week, maybe at most for an hour, once a week. And that certainly is not going to be sufficient to help somebody acquire language. So much of the time in early intervention is going to be spent working with the people who are with the child every day, day in and day out. So that even might be in the daycare center, with the daycare provider, or the babysitter in the home. It might be the parent, it might be the grandparent, it might be the aunt, it might be the older sister. These are the people who are going to interact with the child, day in and day out. And it really helps facilitate the child's development with communication and language skills.
And early intervention is beyond communication. As a speech pathologist, that's the area that I would be focusing on. As a teacher of the deaf, that would probably be the main focus that somebody would have. But early intervention can also be about motor skills. It can be about cognitive skills, play skills, social-emotional skills. And so often, children who are receiving early intervention are receiving visits from multiple different professionals, who each are focusing on a particular area of development. So one of the vocabulary words you'll hear a lot of at EHDI is Part C. So I want to talk a little bit about that, Part C, Part B, what does it mean? Because you're going to hear this very frequently as you go to sessions. And then IDEA another term that you often are going to hear.
So IDEA is a federal law. It's the Individuals with Disabilities Education Act, and it's the federal mandate to provide a free and appropriate education for children who have disabilities. And under the umbrella of IDEA, we have Part C, and we have Part B. And then we often talk about in the EHDI conference, the transition from Part C to Part B. And it's all based on age. So Part C is the birth to 3, birth to 36 months, so really actually the day they turn three. So sometimes people will say Part C is birth to two, but it's birth to two years, 11 months and 29 days, because as soon as they turn 36 months, they transition to Part B, which is more the school age from the special education system. But Part C is the early intervention, and it is supported by federal funding. But let me just say that people will often loosely just throw around the term, Part C, like the way we say Kleenex, when not every tissue is actually the Kleenex brand.
Not all early intervention is actually Part C, federally funded early intervention, but people often use the term Part C, meaning any early intervention, though technically it is a federally supported early intervention system. So the Part C that gets the federal funding does have apartments that come with it. So if a child is truly in Part C, early intervention system, services and goals are going to be determined in collaboration with parents. So again, it's a little bit different than the typical speech pathology model that you learn in schools, that the speech pathologist is probably going to come up with the goals, based on doing some sort of diagnostic assessment of the child or adult that they're working with. But in Part C, in early intervention, the parent is a big part of deciding what are their goals for their child, what do they want to work on in the early intervention context.
The other piece that the federal law requires is that the services need to be provided by a qualified professional, in order to get the Part C money or the federal dollars. And typically, the services are provided at no cost to the family. It's not always a hundred percent true, but generally the early intervention that the families receive through Part C, they're not paying for out-of-pocket. They might be using their private insurance towards it. Medicaid might be billed, or Part C money from the federal government that comes down to the state, but then goes down to local agencies, that money might be supporting it. So usually, there's not a cost to parents. Another big part of Part C, and this is what really differentiates the true Part C early intervention from other early interventions that a child who's deaf or hard of hearing might receive, is that it has to be provided in the natural environment.
That typically means the family's home. So most early intervention services from that birth to 3 period are in the family's home, often in person, sometimes virtually in their homes. So they're in their home, but they're working with them potentially on Zoom or some other platform, can also be in the community. So the natural environment, although typically maybe 90% of the time is a home visit to the family, either in person or virtually, maybe 10% of the time is actually a community-based setting. That might be the child's daycare, where you are working primarily with the daycare provider. The parent might even come to the daycare, and have the visits in that setting. It could even be in the play group. I don't know if Gymboree is still a thing. It was when my kids were little, but that's a group where toddlers get together to play, or to use play equipment.
It could be in that sort of a setting, but if there's a toddler group and all the kids in the toddler group are deaf and hard of hearing, that doesn't qualify for Part C reimbursement, because that's not. The natural environment's considered to be just your typical every day group that any family can go to, any daycare care that any family could join in. Or as I said, even more often, the families actual home. So beyond Part C, there are other early intervention options that many, many families take advantage of. So this is also very common. Most common is the first bullet point, which are specialty programs for children who are deaf or hard of hearing. So that would be something like, the School for the Deaf in the state often has an outreach program. So the School for the Deaf, a state School for the Deaf program is generally an on-campus program, where children come with maybe starting a preschool age, maybe elementary, maybe even they don't go to a high school age.
But these schools generally have an outreach department where they hire early interventionists who will go out to the family's home into the natural environments, so the children don't come to the school, even though it is the school's program, to provide an early intervention. And it's usually different. Let's say for example, I live in Colorado, so the Colorado School for the Deaf and the Blind. We have an on-campus program. That on-campus program uses a bilingual bimodal approach. So you're using ASL and English in the classroom. So sign language is a big part of the communication philosophy at the school, but there's an outreach department that provides early intervention services in families' homes. And this family does not necessarily have to choose sign as a communication method if they're doing the outreach early intervention program. So some parents would be like, oh, the child's involved in the program at the school for the deaf. You might naturally just assume, oh, they're probably using a sign language.
That's not necessarily case in that early intervention, birth to 3 period. There's also specialty programs that are private programs. Some of them specialize in a specific communication method, like there's certain programs that will work with families on developing listening and spoken language skills. There's other programs that work on developing bilingual ASL English skills. There's other private programs that are open to any communication methodology. So there's a whole variety across the United States of programs that are specifically designed to work with children who are deaf or hard of hearing, that are not Part C. Sometimes the family comes to the clinic. If the family comes to a clinic that's not Part C, because that's not the natural environment that's required to get Part C dollars. Private practice is another option for early intervention. So oftentimes that's a speech pathologist, who has a private practice. They may go into a family's home, they may have an office that the family comes to. And then there's hospitals and clinics that also offer early intervention.
So oftentimes, the children's hospital will have both private intervention services that a family can avail themselves of, often delivered by a speech pathologist. They'll often have toddler groups, specifically for children who are deaf or hard of hearing that are again, often run by speech pathologists. In a hospital or clinic, typically it's a speech pathologist, because they need to be able to bill insurance. And that is a profession that can bill insurance, as opposed to a teacher of the deaf, who might not be able to bill a hospital insurance. And families can opt in to any of these things, and sometimes they'll do multiple. So there's families who might go to a toddler group at the children's hospital, but they have a Part C provider come to their home once a week or once every other week. And then they might go to another clinic for other types of intervention services.
So some families choose to do... Well, some families don't choose to do anything. But for those who do choose to do early intervention, they may just do the home intervention. They may also go to a clinic. They may avail themselves of Part C and non-Part C. So there's a whole variety that you might see in terms of intervention. So why is this so important? This is definitely when Dr. White drew up his little box of, then a miracle happens. I like to think that the intervention is a big part of the miracle, but it's a really long-term part of the miracle. It's not a one-time visit, and some way, some miracle occurs. This is a lot of work, and a part of the intervention, and the family over the course of time. But that early piece of it's so important, because when we're talking about learning language, think about if any of you didn't take a second language until high school. How well did you really learn it?
Unless you chose to beyond high school immerse yourself in the language, maybe go to the country that uses the language. Those are the people who really learn the language. But if when you were 15 years old, you started to learn another language, I don't know, maybe I should just speak for myself, but even after five years of Spanish, my Spanish is minimal. I'm not fluent by any even vague stretch of the imagination. And that's partly not because I wasn't motivated, but because the brain is wired to learn language early. And we need to take advantage of that, if we're going to wait. And it's the whole key to early identification, is having the opportunity to work on communication skills early, while the brain is still flexible. While connections can be made more easily, the brain's adaptable, and a language can be run fluently without considerable effort.
And that works. So that early intervention can really, really change the child's entire trajectory in terms of later outcomes, communication outcomes, language outcomes, which then leads to literacy, reading and writing skills. So just in some early identification, the reason why really we're doing it, is that that will allow for early intervention. And then that will allow for better outcomes for children and families. So I want to turn this over now to Will Eiserman. Thank you so much.

Will Eiserman:
Can you hear me? Okay, great. Well, what a story you're hearing. I want to talk a little bit about what we heard earlier, that Marion Downs said was, once you accomplish one thing, then a whole other set of goals open up to you. So we're at a point now where obviously newborn hearing screening has taken off. 98% of children are screened at birth now, and it's changed the lives of many. We have developed systems of support, and early intervention, and family support systems that are really filling in all sorts of the gaps of needs that families face. And one of the important parts of the word, "Early Hearing Detection and Intervention" is that part about early. And not all children with permanent deafness, or who are permanently hard of hearing can actually be identified at birth, but we've hung our hat a lot on newborn screening, and it's changed lives.
But there are children with late onset hearing loss. They can't be identified at birth, because hearing loss can occur at any time in a child's life, as a result of illness, physical trauma, or environmental or genetic factors. And as Linda referred to, the incidence of permanent hearing loss actually doubles between what we can find at birth, and what we find by the time children in their school, from about 300,000 at birth to about 600,000 by the time children are in their school. So that rationale that we have for all of that great funding that has taken the Early Hearing Detection and Intervention program for newborns, to take it off. That rationale, based on that incidence and the importance of language learning applies equally to this other group of children that develop hearing loss. And their early identification of hearing loss is just as important as it is at birth.
So there's a lot of emphasis in early childhood settings about expressive language. People are paying a lot of attention in daycare and preschool programs about expressive language. Not everybody is quite as tuned into the idea that, well expressive language is obviously dependent on receptive language, but how are we really monitoring receptive language? And a lot of people, I think, make the assumption that a child does have typical hearing. And then if not, that would be picked up by a healthcare [inaudible 00:55:31]. Surely that's happening as a part of that, right? Or is it? Actually, it's not a fair assumption to make. In fact, the American Academy of Pediatrics' Bright Future Guidelines for pediatricians is to not do another objective hearing screening until children are four years of age.
That's a big gap of time, critical time, when children are supposed to be acquiring language. So we don't really have a system right now to evaluate children's hearing status during that time period. So in the reauthorization of EHDI in 2017 included what Linda referred to, as this new mandate, that it would expand the scope of EHDI to include the identification of children up to three years of age. And that is really just starting to take hold in the EHDI system, because that new element of the law was not matched with additional funding, but it is still in the block. So to begin with, HRSA, for the 2020 to 2024 grant cycle, asked states to develop a plan for how they were going to expand their capacity, that they identify children up to three years of age, and gave them some guidance, that you don't have to be thinking about developing a complete universal system, because we don't really have a single place like hospitals, where all children show up more uniformly.
But instead, be thinking about all of those partners. You've already seen lists of partners that our other presenters talked about. Well, what other partners could and should EHDIs be connected to, to support the ongoing identification of hearing loss? So I want to talk about some of those, that some states already work with. They include programs like Early Head Start and Head Start, Part C, early intervention programs, which by the way, when you hear the acronym EHDI, the E-H-D-I, is the intervention piece. So that's where children get referred to. There are home visiting programs, and healthcare providers, who can be playing a role in private healthcare or community health centers, but we've really focused a lot on the low-hanging fruit.
And by those I mean Early Head Start and Part C. For 25 years, we have been focused heavily on those at NCHAM. And the reason why, is because these two programs A, exist in every state, and B, they already have a statutory obligation to identify children who have hearing loss. So let me tell you just briefly about what that means. Head Start is a program that addresses school readiness to children in low-income families, by offering educational and nutritional services, health services, as well as social services for those kids. And all children in Head Start must receive an annual evidence-based hearing screening within 45 days of their annual involvement. There you go. That is an opportunity to start identifying children in that birth to 3 range. We've got tons of resources for EHDI programs, to reach out to your local Early Head Start and Head Start programs on our website. Check that out. That's natural collaboration, all ready to go. The other one is what Allison was talking about, Part C, early intervention programs.
Now, when people customarily think about the connection between EHDI and Part C, they typically think about the newborn who's identified at that point, at the newborn period, referred to Part C. But there's another really important connection to Part C. And that is that when any child is referred to Part C, because somebody has a concern about their development, those children are supposed to receive a comprehensive, multidisciplinary evaluation. We don't know yet what really the issue is with the child, but that multidisciplinary evaluation is supposed to include cognitive, physical, including vision and hearing, communication, social emotional and adaptive. In our work with Early Head Start programs, one of the things we found is that when children are identified with late onset hearing loss as a result of some of the screenings that were done in Head Start programs, many of them were already in early Intervention programs, and getting speech and language therapy, but they didn't necessarily have a hearing evaluation or even a hearing screening.
So bingo, again, another incredible opportunity for EHDI programs to connect with the low-hanging fruit of Part C programs, to make sure that they have the resources to support the training that they need, to be implementing evidence-based screening and evaluation practices for every single child that is referred to Part C, because rarely does a family make a referral thinking, I think maybe hearing is the thing you need to check. They're more likely to say "They're not as responsive as I thought," or "Their languages isn't developing the way I thought." If they don't articulate hearing, it may not ever get evaluated. So there's an educational opportunity for all of us in that area.
So we've talked about a lot of things today. On our website, infanthearing.org, you can show a picture of that, you'll find a lot of the resources that cover all of the things we've talked about today under the core of any header here where there are some modules, the bottom left of which is about reaching out to the birth to 3 populations. So here's to what you're launching, and I hope you have a great time at this conference and learn a lot of good things. You'll also find resources specifically about birth to 3 at kidshearing.org. All right. Back to Karl.

Karl White:
Okay, we've given you a lot of information. I'm sure you will forget parts of it, but we hope a little of it sticks. As you came in the door today, there was a handout, entitled EHDI Quickstart Guide. It contains some of what we consider to be some of the most essential information, and then gives you some resources on the document page that you can look at for further information. I want to remind you about this slide that I showed earlier, about how much the progress in EHDI programs really depends on individual people. It's all unused, sitting out there, that will go back and do things that will change the EHDI world. And that's what has changed it so dramatically in the past. Some of those resources that you'll find just very briefly, you'll have to go to the website to learn more about them, but there is an EHDI Pals program that was developed about 15 years ago, that is a web-based portal for families and providers to find information about the pediatric audiologists living in their area.
So you can sign into there, there's no cost to it. You can search on various factors, find how many pediatric cardiologists are within a 50-mile radius, or a 100-mile radius, or whatever you want. There's also, we learned the screen curriculum, which trains people in screening children in the birth to 3-year-old range. There's the Newborn Hearing Screening Training Curriculum, which trains people to screen in a hospital-based setting. There's the EHDI e-book, which contains chapters. There's about 25 different chapters on various aspects of EHDI that has been specifically written by experts in the field. For those people who are new to EHDI programs, there's the Journal of Early Hearing Detection and Intervention, which is what's called an open-source journal. So there's no cost to people who are publishing in it, no cost to people who are downloading it.
Since we started that journal about eight years ago, we've had almost 200,000 downloads of articles in that journal. We would encourage you to browse it and look at what's of interest to you. And then there's the EHDI Annual Conference. And we hope you will be able to use the information we've given you today to get a little more out of the conference. I want to talk just very briefly about what the future will bring. There's a Chinese proverb that says it's very hard to predict things, especially in the future. So we don't know for sure what will happen, but just some of the things that are beginning to appear to be reasonable expectations in the next few years.
One, about 18 months ago, there was a conference in Europe of geneticists and ENT people who were a Chinese group, reported that they were able to provide five deaf children with an injection behind the year that carried a correct genetic sequence for the what's called the otoferlin gene. And by doing that, those children within a few weeks could hear again. That certainly sent the EHDI world on its ear. And within a few months, there was another group in France that reported similar findings. A few months later, two groups here in the US, most of which are exhibiting at the conference, reported similar findings. This is still very preliminary data. We don't know whether the effects of that fifteen-minute procedure, which took kids with a very rare genetic mutation that caused bilateral deafness, whether those effects will endure over a long range of time, whether there will be side effects, whether they'll be able to apply it to other genetic conditions.
But that's something that's certainly not beyond the radar screen of things that might be happening in the future. There was an article about six months ago in the molecular therapy journal that said, "The data are compelling, and astonishing, and indelibly celebrate the ways gene therapy can change lives." So when I talk to people about gene therapy, I remind them that I'm from Utah, where 20 years ago a group of people in Utah, out of the university there, declared that they had invented cold fusion. We got everyone very excited, but it turns out six months later, it was a mistake. So we aren't quite there yet with gene therapy, but it's certainly something that's on the horizon.
Another area that we ought to be thinking about is the use of two-way video conferencing. We saw during COVID how much progress was made there. That will certainly, if we're able to be as successful with it as its proponents suggest that we might be, it will change the cost and the efficiency of providing services to children who are deaf and hard of hearing in dramatic ways. We have a number that in programs who are already deeply involved in it, but it's still not routine practice, and we still have a lot of work to do. And then preventing, diagnosing and treating congenital cytomegalovirus. Cytomegalovirus causes perhaps as much as 40% of all childhood hearing loss. And there is no vaccine for it at this point, there is no FDA for treatment for it.
Fortunately, the prevention of it is basically good hygiene. If people would wash their hands more, and be more careful about sharing food with toddlers, then we could make a lot of progress. But that's certainly something that we ought to be paying attention to. So there are other things happening in the future that you'll find out about at this conference, and we don't want to over-invest in some of those future things until they become a reality. But there's certainly things that we should keep our eye on, and we should be working in our individual states to pursue systematic evaluation and implementation of some of those future possibilities.
You're here at the EHDI conference. I have collected them over the years that we've done this EHDI 101 session recommendations for different presenters about how you can get the most possible benefit out of the EHDI conference. Here are five suggestions that come up over and over again. One is that, take the opportunity to attend the session that you know nothing about and see what you learn. There are over 250 posters, presentations, fundraisers, instructional sessions, at this conference. There's a great opportunity there for you to jump in and learn something, even if it's an area in which you don't have previous exposure.
There are about 70 posters. Some of those posters contain wonderful information. We have this year, a People's Choice Award. So scan that QR code and post for the poster, which you think is the best poster out there. And whoever wins that will get recognized at the final plenary session. Be a connector. You're all wearing name badges. It's sometimes a little embarrassing or a little hard to walk up to someone you don't know, and squint at that name tag. But do it, and meet people, and have a conversation with what they're doing in the EHDI programs. One of the things we did the most feedback on when people evaluate this conference is just what a wonderful networking opportunity it is. But how good an opportunity that is depends on each of you individually.
We also have about 50 different exhibits next door. We hope you'll take time to visit those exhibitors, and talk to them about what they're doing, even if you don't plan to purchase anything from them, that's okay. A lot of those exhibitors are non-profit organizations, but there's also commercial organizations that have made much of the progress, again, possible over the last 25 years. And then finally, take a few minutes tonight to look at the program. You have an electronic app, you have a little program book that has those sessions in it. Plan your day tomorrow, or else it'll escape from you. Again, if we just show up and try and wing it, people don't have nearly as good of an experience.
So thank you for coming. We're grateful to be able to have you as part of the EHDI family now. We have a few minutes left for questions, if you have any. But most of all, we want to wish you a grand experience at this EHDI conference. It's my favorite conference of the year, and I think it will be many of yours too. So thank you so much for coming, and thank you for our presenters. The lights make it hard to see if someone's raising your hand. So there's a mic here. If you have questions or comments, we would love to have them. So I'll stop talking and see if you have any.

Will Eiserman:
I just want to add one thing, Karl, and that is, I think you'll experience that the people who are presenting here are not stilted academic presenters like you see in some professional conferences. Many of them are just like you. So as you attend this meeting, be thinking about maybe you presenting next year. And as you get your feet wet and start to experience things, get creative, and doing new projects, this is the place to share what you're doing. So keep that in mind as you watch people presenting. Could I do this? How would I do this? What would I share? And start planning now for next year, because that can be your moment.

Karl White:
Okay, other questions? Comments? All right. Now's your chance. There's a reception next door. It starts at six o'clock, so you've got a few minutes, and we'll begin implementing some of the things we've talked about. Thank you so much for coming. Oops. We do have one.

Abby:
We have one. Yeah. I don't know if this is on. Can you hear me? Yes. Hi, my name's Abby. I'm from Wisconsin. And I'm intrigued by the EHDI advisory councils and parents committees that would buy some resources. Is there anything like that happening in EHDI states right now? What sort of resources would you ask parents to advise on things of that nature?

Karl White:
Let me have Linda respond, after I say just a couple of things. Every state, as a function of the federal money that they receive from HRSA, is required to have an advisory committee. And they're required to have on that advisory committee, I believe it's 20% of the members or more, who are either parents or people who are deaf or hard of hearing themselves. So you can go to the infanthearing.org website, and you can find in there under the state tab, the name and contact information for every state EHDI coordinator. And it would be wonderful if you were to email that person, or call them and say, "Well, I'd love to be on an advisory committee. How can I help?" Linda.

Linda Hazard:
Karl is absolutely right about the numbers. And in Vermont as an example, we have 24 members. And I believe 12 are deaf, hard hearing adults. Well, I should say a combination of deaf and hard of hearing adults, parents of children, also deaf-blind adults, and then providers throughout the state. So in Vermont, it's a governor-appointed council. Advisory councils may be different, but they're always open to the public. So I would really encourage you to connect with your EHDI coordinator to find out what committees exist in your state. There's also, I just want to mention the [inaudible 01:16:46] Agency Council, which is something else to be, and you could have involved with around Part C. And then as far as parent family committees, we have a family committee that looks at all of our website materials. They look at all of our pamphlets. We'll review them, give information feedback, resource guides that we may be sharing out with families, as well are reviewed and have family participants, which is really a critical piece, so that you get that lens of the family before sending out this information.

Karl White:
On Tuesday morning, you will see the EHDI website of the year presented. And that EHDI website of the year is selected by a group of 25 parents. So if any of you would like to participate in that next year, I'm always scrambling about November to find parents to serve on that. No previous experience necessary. Tony [inaudible 01:17:47] right here is the one that coordinates that process, and it makes a lot easier when he has a lot of parents to help you. Yes?

Katie:
Hello, I'm Katie. I'm from Washington, DC, and I was wondering if the EHDI coordinators are at the conference. I know there's an email you can contact, but is there any way you can find out our state or territory coordinator, if they're here in the conference?

Karl White:
Almost all of them are here. There were a few who were unable to travel, because of some of the federal restrictions, at least, interpretation of the federal restrictions that recently came down. But I believe 40... Well, no, if I can include the territories, I think there are 53 of the states of territories that have EHDI coordinators here. And you can find an email address for them on our website under infanthearing.org, and it would be very appropriate to send them an email and say, "I'm here at the conference. I'd like to meet you." And I'll bet you they'll respond. One of the things that has been so exciting for me over the last 35 years that I've been involved in this, is just how many really nice people there are in EHDI. And they're friendly, and open and looking for connections, so do it. Okay. Other questions? Comments?
Okay. Well, thanks for taking your time and coming. We've enjoyed spending the afternoon with you, and we'll see you at the reception next door. So thanks so much.