The 2015 E-Book, a Resource Guide to Early Hearing Detection and Intervention

ROUGHLY EDITED COPY

2015 EHDI CONFERENCE

The 2015 E-Book, A Resource Guide to Early Hearing Detection and Intervention

March 9, 2015, 3:20 P.M.

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This is being provided in a rough-draft format. Remote CART, Communication Access Realtime Translation, is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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Welcome to EHDI!

"The 2015 E-Book, A Resource Guide to Early Hearing Detection and Intervention"

> DR. LES SCHMELTZ: I guess it's that time. Can you hear me okay? Don't everybody speak at once. You can hear me okay, right? I'm Les Schmeltz, and I'm from sunny Arizona, where it's 83 degrees today, and sunshine. But I don't want to rub it in, you know. We're going to talk about the NCHAM eBook. Are any of you familiar with the eBook or have you referenced it? So it will be new to you, hopefully and something that you'll find a nice resource. Do any of you own Kindles or iPads? Do you read books on your Kindles and iPads? No? I carry around about 150 books all the time, which would get a little unwieldy. The Kindle and the iPad are just characteristic of the tendency to get away from print medium for a couple of reasons, not the least of which is ease of transportation. The eBook that we're talking about is the NCHAM eBook. It's created, conventional, really. Our authors put together material. It's in a Word doc, and it's very current. It's then converted by our graphic artist to a PDF, which is posted on the NCHAM website. So there are, at the moment, 40 PDFs, actually, I think there's 41 PDFs of the eBook, which you may view directly on the website by opening the PDF. You can save the material to your computer. If you happen to have a lot of spare ink cartridges sitting around, you can print the material.

We started the eBook in 2010. At that time, we had 14 chapters, about 150 pages, if you wanted to print it. Our latest edition has, at last count, 39 chapters, something like 525 pages total if you'd like to print it. And if you do, that's fine. There's really no reason that you can't.

Why the eBook? We intended the eBook to reflect the whole gamut of EHDI, to look at the development of EHDI, to look at newborn screening, to look at lots of aspects of looking at kids, working with kids, the educational system, and so we wanted it to be as comprehensive as possible. And we want it to be current. The problem with print books, of course, by the time you get a book published and into print, it's already out of date. So with the eBook, we update annually, we add new sections annually. Some authors don't update their section every year, but every a couple of years. The information is about as current as you can get.

It's colorful, as you'll see when you go to the PDFs. It's very well laid out, nice and colorful, will eat lots of your color ink cartridges if you want to print it, and it's -- you can look at any or all of the eBook. You can look at the eBook online, however you want to access it, and we tried to make it as convenient as possible.

The first couple of years we also published a DVD or CD with the eBook on it and we've abandoned that since because it's gotten too big for one single CD. So you need to get it from the website. What I want to do is walk you through the eBook just a little bit, to give you an idea on some of our sections. We're not going to read every slide. Don't worry about that. Although a few years ago I did go to an ethics presentation at an unnamed conference coming up in San Antonio this year, and it was a three-hour seminar on ethics, and they promised us they would not read the PowerPoints to us, and spent the next two and a half hours reading the PowerPoints, punctuation, and at the end, ready the AAA Code of Ethics, word for word. So if I do that, throw something at me. I promise not to do that.

We started off with the history of EHDI. Karl has been involved in it for a very long time, and the first chapter will give you some information on that. The next part of the process, of course, is newborn hearing screening. Our folks have written a lot of information about that. There's a lot of new information. There's training curricula, and that's all covered in chapter it.

Reporting, tracking, which I'm sure if you guys are involved in this -- there is a table of contents, by the way, on the website, so you don't need to write down the names of the chapters. You can download the first section, the table of contents, and that will give you the information.

An interesting program that has started in Minnesota and has evolved to lots of different states now, utilizing public health partners as assistance for help in follow-up and this reduced the loss to follow-up rate in Minnesota, and they've shared their information with us.

Dr. Sabo talks a little bit about the assessment of the young pediatric patient, and I probably should point out at this point that this chapter isn't written for audiologists. All the chapters are written with a general audience in mind, so they're not going to read like a textbook. Okay? The eBook is intended for new EHDI coordinators, people who are just starting in the EHDI system, for students in Au.D. programs, for parents, for anyone else who is really interested in the topic of EHDI and wants to get up to speed for what is happening. If you want a textbook on pediatric assessment, this isn't it. This is something that hopefully everyone will understand. We tried to minimize the use of jargon as much as possible so a parent could read this or someone who is just getting into EHDI, and will still understand what it's about. Okay?

Dr. Todd has talked a bit about etiologies, again, in a relatively jargon-free environment. He talks a bit about the importance of genetic evaluation. CMV, which is a huge issue, and as you know, there's lots of research now going on between incorporating CMV screenings in the hospital settings, and I think this will be coming up in later chapters. ANSD. Have any of you seen ANSD kids? Yeah? Scary, aren't they? I go back over my fitting hearing aid years and fitting magnificently to that kid, only finding out that they were doing better without the amplification than they were with it, and my first inclination was to blame the parents. You're not putting that hearing aid on that child enough. He can't possibly be doing better without it than he does with it, right? Well, Auditory Neuropathy Spectrum Disorder. I can think back through the years and who were probably ANSD kids long before we had any idea what ANSD kids were.

A new chapter, talking about kids who are Deaf and hard of hearing plus, with some other confounding condition. Risk monitoring, which is a huge topic, discovered in chapter 10, and I'm not going to read -- you can read the little quotes if you'd like, if you can read faster than I can talk. The medical home, a big topic in the American Academy of Pediatrics, particularly, but this is kind of to acquaint parents with what to expect with a medical home, and EHDI professionals with what to expect with a medical home.

Hearing aids and assistive devices for the hearing-impaired child. This chapter gives you information what to expect with hearing aids, some information for parents what to expect during the hearing aid fitting and verification process, so it will give you a little bit of an idea of what's generally available at this point, okay?

The cochlear implants chapter, Dr. Cunningham, who is over there in the second row, did our cochlear implants chapter for us. Obviously, a huge topic, and she's done a nice job with it.

Keeping hearing aids on kids' head, this is new as well.

Parent counseling has changed a bit, in case you haven't noticed. How many of you have parents that bring information that they got from the internet in to you, to interpreter for them or "did you know about this?" Or "this will cure this or that." So I think we've gone from being information providers to probably being information sifters to be able to intelligently discuss with parents and others, this is really good and useful information. This is information that may not be too great, and you probably have to take it with a grain of salt. But it's -- it isn't like it was a few years ago when I started in this business where you hand the parents an arm load of brochures and books and tell them, study this. You need to know all this stuff, and the next time you come in to see me, I'm going to impart all my wisdom to you, and they're just going to sit there and blindly accept it. It doesn't happen anymore. It's changed, obviously. So we talk about change here.

Dr. Ditty is talking about connecting audiologists, helping families to connect to the EHDI process. It's an integrated process, as you know, when you look at the people at this conference and the huge diversity of professions that we have here, it's not the audiologist connecting the family with the early interventionist. There's lots more to it than that.

Cultural competence is a huge issue. Janet DesGeorges is a parent who has been with Hands and Voices for many years, is an expert in family support and gives you good ideas of what to expect from family support.

A new section this year, Deaf community support for families. Another of our authors joined us. Deaf adults connecting with birth to three families. In talking about Deaf specialists, Deaf mentors. Again, an issue that early on in EHDI, I don't think we considered very much. Now it's become a very, very important issue.

A new section this year from a hearing from a Deaf sibling who talked last year at the EHDI conference about building relationships amongst siblings. Often, you know, if we have a hearing-impaired child, that child tends to get the lion's share of attention in the family, and sibling relationships sometimes are a little bit ignored. These two gals, I think, did a magnificent job of setting up communication in the family and communication considerations, and other considerations for developing a healthy sibling relationship, for them, over 50 years.

Betsy Brooks, not here today, informs us about the Moog Center Program, basically an early intervention program that's been used in several schools now around the nation and talks about their curricula for early intervention.

Another viewpoint on early intervention from Dr. Sass-Lehrer. Again, these are viewpoints that people need to look at and not necessarily subscribe to 100%, but when someone talks about models of early intervention, you're aware that there are different models and some advantages and disadvantages to each.

Telepractice is getting to be almost a standard in early intervention now. Early interventionists are discovering they can work from a central site and work with eight families in eight hours, instead of driving two hours to a family, work for an hour and drive two hours home. It's a much more efficient use of their time, and families don't have to make arrangements to get the child out and travel. They don't particularly have to clean the house. Maybe clean the area that you can see on the teleintervention system, but not necessarily clean the house. If there's a sick child in the family, they don't have to worry about it. They can be at home with them.

The huge advantage, I think, in teleintervention, and what folks are reporting, is that parents are much, much more involved. The interventionist is a coach, basically, and a coach on a computer screen. And all the work that's done with the child directly is done by the parents. And so you don't have to spend the last half of your intervention section teaching the parent to work with the child, because they've been doing it all the way through. And so folks are reporting that families even close to centers who could fairly conveniently come in are opting for teleintervention. So I think that's going to get to be more and more efficient as time goes on and as more people have high-speed internet and computers to handle it.

Another new section this year on culturally appropriate play. Something that we probably haven't thought too much about in our work, work, work, work, work intervention efforts with kids. But something that's extremely important.

How many of you have Spanish-speaking families in your caseload or in your program? Yeah. In Arizona, we have a lot of Spanish-speaking families. So Lucia, who is Hispanic, has done a whole section on the culture and the foods and the kind of things that you can relate to kids in a Spanish-speaking population, and it's very different. It's very different than just knowing the words. You really have to know the culture.

Anybody working with families in poverty? Again, a different culture, right? Totally different culture. And these folks, you know, it's very easy for us to recommend that they go out and buy things or do things, but when you're struggling to put food on the table and pay your rent, it can be difficult for families in poverty, and the outlook is sometimes very different. So this is, I think, important.

Bilingual, anybody doing that? English-Spanish, German, French? We'll discuss this. Once you get near the end of the early intervention process, you need to be involved with educational audiologists who start off in the Part B system at age 3 in the public schools, and so an educational audiologist and Charles Johnson have put together some ideas on involving educational audiologists in the EHDI program. A lot of times, educational audiologists are involved in the early EHDI efforts. When I was in Iowa for many years, the educational audiologists often provided screeners and some of the opportunities for kids so there are a lot of opportunities for educational audiologists to be involved. Sometimes it's a matter of approaching and asking.

Ah yes. And then there's advocacy. The goal of this chapter primarily is to help the parents realize their role in advocacy for their own kids and to understand some of the relevant legislation, without going into being a lawyer, but to understand some of their rights and some of their responsibilities and some of the ways that folks can work with kids, if the parents are active advocates for their kids. Something to look at.

The Echo initiative, the Early Childhood Screening Initiative does screenings in Head Start and is expanding that to screenings in physicians' office. How many of you have EHDI screeners? How many have kids lost to follow-up? The Echo initiative is designed to work with Early Head Start and Head Start programs to provide early screening, maybe helping those lost to follow-up in the EHDI system to be picked up relatively early, so it's a great link to EHDI.

Information management is crucial to the efforts of EHDI, and so, again, this is not an in-depth discussion of information management systems. You couldn't go on and design an app or system or computer after reading this, but hopefully you'll understand some of the parameters that are necessary for a system. Okay?

You all that websites, I presume. All of you state folks have websites. So Karen is actually a website designer who has put in some suggestions for website design and digital homes. So hopefully that will help a little bit.

Any of you use Twitter, Facebook? There are some others around. What are they? Pinterest? Instagram. That's one I haven't used. I don't do much with social media, but EHDI programs are finding that using digital and social media is extremely helpful with many families. A lot of folks don't have home phones anymore. They converse primarily texting or social media. So EHDI programs have found that social media can be extremely helpful in terms of not only loss to follow-up but keeping in close contact with families.

Faye kind of brings it all together, so when we talk about what an EHDI program should be and how things should work. The inevitable financing, right? Nobody worries about that, do they? And grantsmanship, as I'm sure you've all written at least several grants, right, successfully, I hope, but this will give you some ideas. And the QAI efforts, that will be brought up next year.

How many of you do marketing for your EHDI program? One? You don't give away bibs or ice scrapers? You ought to take a look at this chapter. There are some really interesting ideas in there, about how to make families more aware of EHDI, how to get them to follow up, how to get a little bit of cooperation from various populations. I think there's some great ideas in there. I like the bibs and I think -- was it Wyoming does the little onesies, on the back, have you had my hearing rescreened? Whatever works, right? We have another slide that's not included in this slide deck and that's on assistive technology. Things like phones, smoke alarms, things that kids have to learn about and how families can integrate that into their daily lives with their hearing-impaired kids. So that's chapter 39.