ROUGH EDITED COPY

EHDI
Malpensa ‑ 3:45 pm CST Breakout Session
March 5, 2019

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Connecting with NC Pediatric Audiologists through Outreach, Training, Education, and Collaboration
with: Jude Williams, Emily Burt, Marcia Fort, Johnnie Sexton, and Jenna Rankin
3:45 pm CST  

    [ Speaking off microphone ]. 
   >> Hi, everyone. I appreciate you coming. I know it's the end of the conference, but I have a little surprise for you. It's Mardi Gras! Woo! 
   [ Laughter ]. 
   >> So today we will talk about how North Carolina ‑‑ can you hear me through there? We're going to talk about how we connect with the pediatric audiologists in North Carolina. I have Jenna Rankin, and Johnnie was supposed to present with us, but he's not here. Fun fact about Uncle Johnnie. He was my audiologist when I was a little girl. I'm sure you all know who Johnnie is. Right? So we will talk about how we connect with the pediatric audiologist. We're going to talk about the educational materials that we use, and we're going to talk about our sensitivity training. I hope that all of you know the EHDI goals by now, the 1‑3‑6 month goals. Has anybody not heard it? Do we need to go over it? We're good. We're good. Screen by 1 month, diagnosis by 3 months, intervention and amplification if appropriate by 6 months. Every EHDI program is different. Ours is under the department of health and human services. And finally the genetic and newborn screening unit. So, we have some members of our EHDI team today. We have our coordinator with us, Marcia Fort, if you will stand and take a bow. We have Linda. Stand up and take a bow! And then we have Jean Williams. Stand up and take a bow. 
    We also have a parent consultant, data manager, and follow‑up coordinator and an administrative assistant. We are a big, fabulous team. So, a little about our pediatric audiologist. How many of you are pediatric audiologists here in this room? Good. Okay. So, in North Carolina, we have 31 facilities that are approved on a diagnostic site list. As well as facilities in Virginia and South Carolina. That protocol can be found on our website, which is listed here. 
    And also, this list is given to all of our pediatricians and birthing facilities. What is happening here? Hello. So we are going to talk about these four things today. 
    First let's talk about the outreach. We have a big team, so we have an opportunity to spend time doing outreach activity. We provide consultation and technical assistance. That can be anywhere from going to the birthing hospitals and try to troubleshoot why the equipment is not working or provide a loaner if we have to. We can get them to the hospital ASAP, then we will be less likely to lose the babies to lost to follow‑up. So, this is our county map. We have 100 counties. We have ten consultants. So, you would think that each of us get 10 counties, right? We're divided by population. So, you'll see these counties, the consultant only has three counties. It's because it's a very large county. She had just as many babies to say Linda who has the purple. We provide technical assistance and training and provide families with resources as well. 
    It will compare how this audiologist is doing compared to the state average. We also show them who in that facility is reporting their results within five days and who was not. Because North Carolina law is that you have to report it's very important to us. And just things like that. What is one thing about this report? We don't just send it to them online or in an e‑mail. We visit hospitals and pediatric audiologists and we go over this in person. We talk about our training. Our version is called hearing link. So we have an online on demand training for audiologists. What's different about that, this is what it looks like. Is that for audiologists, there's a place where you can put in your diagnostic information. And what you will see in the designation is we want to see complete diagnosis. We don't want to see incomplete. That means we want ear specific and frequency specific information. And so, this is really helpful for us. Last year we wanted the one for the screeners in the hospital. So, the sensitivity trainings is a joint collaboration between the care project and the North Carolina EHDI. You have heard of the CARE project? Are you sure about that? Anybody not heard of it? If you haven't heard of it, talk to Brian. So, basically what we want to talk about through audiologists is we cover the hearing loss facts. We cover the speech and language development. We cover the 1‑3‑6 goals. We cover just about everything I will show you some special points here. We talk about the grief, okay? Nobody likes bad news. And guess what? We don't like giving bad news. The first time you get a bad mood, you might be ‑‑ you might have a tendency to say don't worry about it. Oh, the baby is fussy. Oh, it's the equipment. What happens when you tell the parents is that we may lose the baby, because it's no big deal. No reason for me to go back and follow‑up. We don't want that. The dads and moms are going to react differently. So, we provide a whole 30‑minute training on all of it. 
    Also, we cover ‑‑ we want the audiologist to hit the pause button, give them the news, let them digest it. It may take a couple of days, because if you keep going, they're not going to remember anything you say. They may remember, like, if the dad was saying all I remember was hearing about the food. So, you want to give them ‑‑ I learned that in the session yesterday. Was it Brian's talk? Were you talking about the fruit? 
   >> [ Off mic ]. 
   >> So give them time to process that information. So, here today I have a sample of the screening to show you what a piece of it looks like. So, hopefully this is going to play. Oh, it is. Okay. 
    [ Captioned video ]. 
   >> Okay. Important, right? Okay. So, the results that we have from the screener training, we've had over 1,000 views so far. I've got about ten minutes left, and I'm going to wipe through this. Bear with me. Let's talk about the education component. We have the permission for referral form. We're very proud of this piece of paper, because we were able to get input from different agencies. We're constantly improving this and updating this. The other thing that I want to talk about is that we have this little fact sheet. North Carolina is so awesome that we have so many agencies that can help a family. We're getting ready to revamp this whole thing. We were talking yesterday in our stakeholders meeting that there's going to be a representative of each agency, and they're going to talk about ‑‑ they're going to have a really easy to understand description of what their agency does and there's going to be a line where the agency will come out to the home and say where's the yellow paper? And the parents will hand them a yellow paper and the agency will write their name and their contact information. 
    So, this is all going to be revamped. But I just wanted to show this to you. We also have an e update, an electronic newsletter that gets sent in an e‑mail. We talk about things like the advisory committee updates. The data. All kinds of things. Now let's talk about the collaboration. We have the EHDI advisory committee. I have heard from other states that you have an EHDI advisory committee, too, but we have lots of audiologists in our committee. If this slide looks busy, it's because we are busy. There are so many agencies that we have on our committee. Half of them are parents? Is that right? 35%? Okay. The other thing that we have done is we have communities and we developed different professionals come from that community to get together to help us improve the loss of follow‑up rate. We asked them for help, figure out what the problem is, let them collaborate. I'm going to turn you over to our parent partner. The reason why I brought my parent partner with me today is that we use our parent partners for a lot of different things. If we can talk to audiologists, we can talk to hospitals, we can talk to doctors until we are blue in the face. 
   >> Hi, everybody. I'm Jenna, and I'm a parent partner on the North Carolina EHDI advisory committee. And I got involved with the committee and am passionate about hearing loss largely due to the fact that several members of my family have hearing loss. Both my mother and father‑in‑law are profoundly deaf as well as one of my daughters. Hearing loss skipped a generation. And the world that my daughter is growing up in as far as technology is concerned is much different than the one that her grandparents experienced.  So my daughter that has hearing loss is three years old now. The most important thing that I feel I have taken away is I need to be her voice and advocate until she has the capability to do that for herself. 
    When my daughter was born, our newborn hearing screener came in and took her, did her initial test, and brought her back and told us she had not passed. But she was fussy. She wasn't calm. I don't trust the results. I'm going to have another screener come back in the morning and take her again. So, we sent her again in the morning with another screener and this time she was calm. And the screener brought her back and said, you know, she didn't pass, but it's just fluid in the ears. There's nothing to worry about. Don't be concerned. Just bring her back in two weeks for a follow‑up. So, we brought her back for her follow‑up screening two weeks later. At this screener we had another person. She had her device and she started the test and she did the test again and she did the test again and we were watching both my husband and I, and we felt very confused and perplexed because something clearly was not going as the person expected, but she continued to test her until she got her mechanism to turn green. Once it turned green, her face lit up and she said, "She passed!" Because of our family history, we asked to be referred to an ABR regardless and there it was confirmed that she had profound bilateral sensorineural hearing loss. We feel lucky that with were able to get an accurate diagnose for my daughter at three weeks old, but I know several people where that has not been the same experience.  The road was much longer and much harder. For me, I feel really lucky to have been asked to be part of the EHDI advisory committee. I have been able to grow in my understanding of how newborn hearing screenings are supposed to be completed and what is being done across our state to make them more reliable and more accurate. And the EHDI advisory committee has allowed me to learn about all of the wonderful support services in North Carolina that we have. And since I am a parent, I know other parents, and I'm able to share those with my fellow parents who have children with hearing loss that can't be an EHDI advisory committee member. 
    I also was actually involved in developing the sensitivity training that you saw the little clip for earlier. I was on that committee and I got to give the parent perspective in all of this and add that into the training that was included. I was able to voice a need that I feel like is missing in our state. We don't have ‑‑ my daughter, seeing her grow up and have such a special relationship with her Deaf grandparents, it's very different than her relationship with her hearing grandparents. And so I feel like that's missing for our kids in North Carolina. They don't have a lot to look up to. So, I brought that up in an EHDI advisory committee meeting, and now our state is looking into trying to start something like that for our kids. So, I just want to say I'm so thankful that North Carolina allows me to be a part of this EHDI advisory committee. It's helped me grow in my confidence and knowledge. When I talk about hearing loss and I'm able to educate those around me about my daughter wears cochlear implants, so I'm able to educate people about their capabilities and also their limitations. I feel like because she is excelling in spoken language that a lot of times people expect her to function just like any typical hearing kid. And I have learned I need to be her voice and speak up when that is not happening for her. This committee has provided me with information and experience I couldn't have gotten elsewhere. And I'm thankful to have been asked to come here. 
   >> We have one minute for questions. Anything? 
   >> Thank you for coming. 
   >> Right on time! 
    [ End of stenographic realtime captioning ]