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ROUGH EDITED COPY

EHDI

2017 EHDI ANNUAL MEETING

OPENING PLENARY:EFFECTIVE FAMILY ENGAGEMENT:

A PANEL ON THE POWER TO INFLUENCE EHDI SYSTEMS

FEBRUARY 27, 2017

8:00 - 9:05 A.M.

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* * * * *This is being provided in a rough-draft format. Communication Access Realtime

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>> Karl White: Good morning, everybody! We welcome you and ask you to come in and take your seats. We'll be starting in just a minute. Over the years, I discovered that people at EHDI enjoy networking so much, they don't actually start coming into this room, many of them, until they hear someone speaking up here. So we're going to cover a couple of things before the official opening of the session. So that we can start on time and stay on schedule. So I'll do the official opening in just a moment. While those who are here now, I hope you have downloaded the app. It is one of our efforts to make this meeting more efficient and to save some trees in Oregon statement.

You will notice that the program book is reduced in space from what it has been before. But the app is absolutely wonderful. If you haven't downloaded it, we encourage you to download it just as soon as you have the opportunity and to become familiar with it. The people at the registration desk or EHDI concierge tables can help you if you're having trouble. Not only can you create your own personal schedule, but send private messages to anyone else using the app. Great way at that find people. Gives you the hotel map and opportunity to complete the evaluations for all of the sessions you're in. I think it's really a useful tool. We hope you will download it. We also want to mention the wonderful sponsors at this year's meeting. We've had more people step up than

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previously. They all have exhibits in the exhibit all, along with other people in the hall with exhibits. We hope you will visit those exhibits. We'll wait just a minute now while the other people come in, then we'll start our official opening. So thank you.

Welcome! Welcome, welcome! We are delighted to have so many people here at the 2017 national EHDI meeting. If you have not already downloaded the app for this year's meeting, we encourage you to do so. It provides you with some great tools to interact with other people, as well as to know which sessions you want to go to, to complete evaluations for the sessions, to complete your CEU application. It's a great new tool. If you have any trouble, we hope you stop by the registration desk and they will help you with that. My name is Karl White. I'm delighted to welcome you to the 2017 meeting that is organized by the HRSA Maternal and Child Health Bureau, the American Academy of Pediatrics, and the National Center for Hearing Assessment and Management. On behalf of all those partners, we look forward to a wonderful meeting that really depends on your participation. We particularly want to thanks the wonderful sponsors that have stepped up to help us financially with this meeting. Without those sponsors, we really wouldn't be able to do much of what happens at this meeting. Before we begin our plenary session this morning, we'd like to recognize some key people who have been instrumental in helping to organize this meeting. We have a Planning Committee of about 20 people that we will recognize at a later session, but we'd like to especially recognize the people from our Georgia contingent who have helped organize this meeting, have done some wonderful things. Kelly Dundon with the Georgia EHDI program, Teddy and Scarlet with Georgia Hands & Voices have really stepped up and done some additional activities that we haven't had before. So if you can join me if giving the Georgia contingent a hand for all they've done. [Applause]I mentioned the sponsors of this year's meeting. There are seven organizations that have stepped up as sponsors. We have one platinum sponsor this year, the Pediatrix Newborn Hearing Screening Program. They brought over 40 of their staff to the meeting. So thank you very much. Then we have two sponsors this year at the silver level, Otometrics Audiology Systems and Vivosonic. Four bronze level sponsors, Children's Healthcare of Atlanta, Otocon, Oz Systems, and the National CMV Foundation. All of these have exhibits in the exhibit hall, with 36 other exhibitors. We encourage you to visit those exhibitors. They bring a wealth of resources and knowledge and experience in EHDI programs. Many of them have been with us for 16 years now, and without them, we wouldn't be able to do the work we do in newborn hearing screening. So we encourage you to visit them, find out about their new products and resources. We have an equal mix of nonprofit organizations who exhibit as well as commercial organizations, and all of them are important.

We have several housekeeping notes that we'd like to remind you, everyone who is here at the meeting should have a badge. We encourage you to wear that badge, not only so people know who you are, but that's your ticket to get into the various meetings.

The morning break and the afternoon snack will be served in the exhibit hall, that gives you an opportunity to get a little energy as well as visiting the exhibit booths.

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Lunch for both today and tomorrow is on your own. I think we've allowed enough time for you to go to the places nearby. There's a food court connected to the Hyatt Regency and a number of other places listed on page 5 of your program book and also in the app. Then there's also the market here in the hotel that has grab-and-go items that you can quickly get your lunch and get back to networking.

So we encourage you to grab your lunch today quickly, then visit the posters that are also in the exhibit hall. Poster presenters will be on hand from 12:45-1:45 in the exhibit hall, which is right next door to our meeting here. And you may have noticed that your program book this year is smaller than it has been in the past, but all of that other information is in the app. So we encourage you to go there. All of you are, most of you, were at the reception last night. We thank our sponsors for that, Pediatrix and Oz Systems, it was a great opportunity to network. That's always the time when people get reacquainted with old friends that they've met here, and we hope you will meet new friends and take advantage of the opportunities here.

Then we also have a great contingent of parents here this year. Part of that was possible because of Otocon that provided some financial support for additional parents, and we're really focusing this year, as will become clear to you in this opening plenary session, on how to better engage families in the EHDI process.

So this shows the number of people who are here at the meeting. One of my favorite things about this meeting is what a wonderful mix of stakeholders we have. As you can see there, the largest contingent is audiologists, followed by early intervention and EHDI staff. We're pleased to have almost 160 family members of children who are deaf and hard of hearing. Then people from lots of other organizations as well. This comes from the registration page, where we asked people to indicate the roles they play in EHDI, people could check more than one role. But we have over 1,000 people registered for this meeting. With so many different people, it provides us with an opportunity to really examine all the different components of an EHDI program and to figure out how we can best serve the children and families who we are focused on.

You will find, if this is your first EHDI meeting, and that's the case for a large contingent here this year, that many people have very strong opinions about how to best provide services to children who are deaf and hard of hearing. That, in my opinion, is what makes the EHDI program so wonderful. It's those differences of opinion that we have an opportunity to come here and talk about and to listen to other people's ideas that enable us to find fresh solutions and better ideas to serve the children that we are focused on serving.

But with such opportunity comes some risks. One of my favorite books is a book called "Crucial Conversations" that many of you will be familiar with. "Crucial Conversations" is defined as a situation where the stakes are high, opinions vary, and emotions run strong. I think that's an apt description of EHDI programs. The stakes are high. If we identify these children and provide them and their families with appropriate support, the outcomes are absolutely amazing. But there are differences of opinion about how to do that best. And we welcome those differences of opinion and hope you will have opportunity to talk about those differences of opinion, because that's where we

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learn from each other. But in doing that, it's important to make sure that we follow the five points that are listed under that definition. My personal favorite is the one that says respect is like air, when you don't have it, nothing else matters. And so we encourage you to engage in those passionate, energetic discussions, but we also hope that all of us will remember to be respectful, that everyone here will feel safe and encouraged to express their opinions, and that we will be able to continue to work together to create wonderful programs for children and their families.

So this morning plenary session is on family engagement. And we have a wonderful group of people that I would invite to come to the stage at this point. This plenary session is being moderated by Janet DesGeorges, who is the executive director of Hands & Voices, has been at this meeting for many, many years and many of you know her. She has asked four people to serve as panelists, Laura Gramer, Karen Wisinski, Djenne-amal Morris and Mariana Barquet. So I will turn the time over to Janet for what I'm sure will be a wonderful and enlightening session. >> Janet DesGeorges: Good morning! Thank you so much. On behalf of the parents and myself, we want to thank the organizing committee for having the honor today to start off this conference on a topic that is near and dear to our hearts. I'd also like to thank support from the Maternal and Child Health Bureau and those of you from there who helped us to think about some of the questions and conversations that we would have today in family engagement.

So I had a dream the other day, I was sitting in an audience waiting for the next presentation and the person with the microphone introduced me, and a topic I had never heard of before. I was sitting there going, I didn't know I was supposed to talk. I thought I might as well go up and talk. [Laughter]And as my husband says, I've never met a microphone I didn't like. [Laughter]But today my role is moderator. I am so honored and privileged to be here with this group of the brain trust, the wealth, the passion, experience and expertise of this topic we're going to talk about in family engagement today.

Before I introduce the panelists, you wanted to just share for a moment, for us to collectively think about some of the definitions of the words that we'll be using today. I'm a bit old school, so I most often use the term "Parent" and I will probably do that today. When we're talking about parents, of course we're talking about parents, family and caregivers. Those are some of the terminology and the words that I think have evolved and are evolving in the usage of talking about family engagement.

Thinking about the term "systems" as I was thinking about that, well, I was Googling it, I found many definitions of the term "System" and almost every time the word system comes up, the word "Complex" comes up, complexity. Let me read this one definition that says: Systems, a set of connected things or parts forming a complex whole, in particular a set of principles or procedures according to which something is done, an organized scheme or method.

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If you think about the goal of what we're doing in the EHDI system, even here at this conference, it's complicated. There are no simple solutions. I think families and the family journey represents that more than anything else, in terms of the individualized needs of our children and the journeys that each family goes through.

In thinking about engagement or empowerment, I like to think of that term really another theoretical concept that isn't new, called co-production of services. Let me just read you that definition: A relationship where professionals and parents or caregivers share power to plan and deliver support together, recognizing that both have vital contributions to make it in order to improve the quality of life for families and children.

So you think about sharing power and starting from a platform of decisionmaking and building a systems together. So with that, I'm going to introduce our panelists and we have some questions for them, we do hope to have some time for questions from the audience. We'll see how that goes.

First, in your program books, the full biographies, not the full story, but I'll briefly introduce them. Their stories will unfold in the telling of this. One reminder in terms of those who love family panels, today's family panel is not about necessarily just sharing our own stories. We are going to share our stories today, but the story is really about family engagement in the system.

Sarah, Malik, Will, Jack, Bret and Luke, those are the children that our people here on this panel represent today. Those of you who are parents in the audience today have your names in your hearts, and that's our starting point.

I'm pleased to introduce Djenne-amal Morris, who is from North Carolina. She has an amazing son with CHARGE syndrome. She's going to share her stories and experiences today.

Karen Wisinski lives in Michigan and is a mom to two boys. Her youngest was identified as hard of hearing at the age of 3.

Laura Gramer and her family reside in Seattle, Washington. They are deaf parents of two deaf sons.

And Mariana Barquet was born and raised in Mexico City, Mexico, she's lived in the United States for 12 years. She lives in Indiana and she has a deaf son, Jack.

So, ready? Here we go! OK, come on. If you know me, that was pretty short introduction. [Laughter]All right. I've just introduced you and your family very briefly to the audience. I know you each have tremendous personal family stories. But for today's topic in family engagement, please share why you as a parent, caregiver, family member stood up and got involved or are getting involved with the EHDI system to make a difference.

This is the one question we'll have all of our panelists answer. I'll start with you, Djenne. >> Djenne-amal Morris: Good to see everyone here today. The reason I got involved, I was always taught to stand up and get involved. Family, culture, education has always been very, very important to me. When I became a parent of a child that couldn't stand up for himself, that came home for me. But what really made the difference in me

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getting involved in my EHDI system was my early intervention teacher. She came into my home and taught me how to stand up, and she stood up for me when I couldn't stand up. But she didn't only stand up for me, she modeled what it was like to stand up for my child. She gave me the skills, taught me the words and taught me that I had a right and I had the passion, and I had the skill to stand up for my son and the rest of my family.

As I was preparing for this, I thought, even before I became a parent I was a leader. But when I became a parent, it was those skills that I attained being a leader that really made a difference, that I was able to translate into standing up for my son and getting involved in the programs, early intervention programs. This was back in Boston when Malik was younger. I became a parent advocate because I realized someone stood up for me, and that it was my responsibility to pay it forward. I remember saying to the social worker "When I grow up and get out of this, when Malik is OK, I will do for other people what people did for me." Malik has grown up. He's OK. But I'm still doing that. >> Wow. So I was a stay-at-home mom for a very long time, and when I was ready to get back into the work world, I looked around, and about the only field I could find myself getting excited about was having something to do with children with hearing loss or deafness. And so I really think that was because it took us, from the time my son was 16 months old until 3 years old, of testing and appointments and questions, until we finally got that definitive understanding of his hearing. And that was a very long and intense experience for us, and I just felt like I wanted to make it easier for other parents. It just didn't feel right just to let that experience go behind us and not be a part of trying to help improve things. >> I don't need the microphone, thanks. Good morning, everyone. My name is Laura. I have two deaf boys. One is almost 6, one soon will be 3. I got involved originally with my parents. My parents are hearing. They're like many of you. They included me in their advocacy work. I remember back in 1982, my parents brought my whole family to central Chicago where I was raised, and they were having a rally at the time because President Reagan wanted to destroy what was known at the time as IDEA, and throughout the years, I was involved in very different ways. I continue to advocate for my boys and for my family, even though I have been doing it for a long time, the problems are still there. So what's nice about being here is meeting with other hearing parents who have a similar experiences to mine and know that we really do have some common ground and we share our stories. Like when my son was diagnosed as being deaf, we brought him to the doctor. Then they knew that he needed services. At the time, my husband and I, who are both deaf and were both working parents at the time, I now stay at home, we wanted to be involved, and right away, the doctor started talking about cochlear implants and we need to do this or that. It was like, Wow! Wait a minute. We're deaf adults. We're working adults. It became very upset and hostile towards us. It really bothered me that they didn't really see us as the parents. And as experienced deaf adults.

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He didn't really want to work with us. So it really bothered me in how he saw us as parents, because we were parents first. And we just wanted to get all the information we needed for our child.

So I'm really happy to be here today and share with you some of the various things, the changes that have been made in the system and what needs to happen in the future. >> Hello. Hi. My name is Mariana. I got emboldened, when Jeff was very little, we had a hard time diagnosing him. I kept a list of 36 times we called the pediatric hospital to get an appointment for ADR. I was stunned. I didn't know what else to do. I remember I saved a little post-it in the paperwork from the hospital with the name of a phone number of a lady that called me and offered her help. So I called her back, and they got me an appointment within 10 days, and Jack got diagnosed as profoundly deaf on both sides.

Time went by, you know, and we had a lot of early intervention providers and a lot of help, and it was very hard for me, very, very hard. At some point, I realized it wasn't that hard. When I thought of that, the Hispanic population in this country and the hurdles they have to go through to get medical care and access and learn and I realized I had my calling. They needed someone to speak for them, and they had the right to have the same opportunities as my son Jack had. So that's where I found that these families need us, but I need them too.

As working with them, I have found my true self. >> Janet DesGeorges: Thank you. That's so nice. Based on the definitions that I shared in the introduction, how would you add or change the definition of a system, a family, or engagement? Does anybody have any thoughts on that? >> I guess I would take it a little bit further maybe, that to kind of combine all the definitions for purposes today, that it's EHDI systems, and I almost see it as 1-3-6 and beyond. Or another number, and I'm not sure what that other number would be. Because it's about building the well-being of parents and helping parents to be knowledgeable and feel empowered so that they're continuing to be engaged throughout the child's life, throughout the children's lives of those they're helping. So it's not just things end at 6 months, it's engagement throughout the life cycle. >> I -- >> Janet DesGeorges: I always wanted to try to change the system to the 113366 model, screen at 1, connect to parent, parent support. Identify at 3 months, connect to parent-to-parent support. Six months. Can we do that? No? OK. [Laughter]Anybody else? Laura? >> Laura Gramer: Well, this isn't a new idea, but I would love to see more deaf involvement, because all of our children are growing up and they're going to become adults who are deaf. So it's important to have a deaf adult involved in this process so that deaf people, to be working in the system, so that they can be people that are being seen, such as deaf mentors and deaf storytellers. Sometimes parents who have deaf

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children have never met an adult who is deaf before, and it might be very helpful for their child's future for them to understand what adults look like who are deaf.

So if there were more deaf adults working in the field, it would really help to balance the what people are seeing. Then it would be better for the children to have the experience that we have had growing up.

So for people not to dismiss what they can become when they become adults, because sometimes they look at just the hearing professionals and they don't understand some of the frustrations that the deaf adults have. So if deaf adults could be useful leaders for helping the children in the future, that would be great. >> Djenne-amal Morris: I don't know if I would change the definition, but what I would -- I would implore us, as professionals and parents, to understand one another's definitions of what a family is, what does the system mean to me as a family? What does it mean for my family to be engaged? In my work in North Carolina, at Beginnings, we go into the homes and really try to understand what the family definition of support is, we ask what support do you need? What can I do? What is your family like? Tell me about them. I know that a lot of, even early intervention teachers do the same thing, this is one thing that I feel very strongly about, is to understand the culture of the family, the what they understand to be help, so that I can help them, so I'm not going in imposing my beliefs or my thoughts on what they need. When you do that, with a family, you're walking with a family, you're doing something with a family, rather than doing it to them, and you're training and teaching them to do the same. When we walk along with a family, even with our definitions, but understanding what their perspective is, we're more likely to have them be engaged, because they feel like we can work together for the sake of our child, to help our child to reach their full potential, rather than this is what you should do. Because when I was in my early years, I think that's so key, the 136, the early years are key. If the family feels they are really empowered, then they will -- we want to work ourselves out of a job, right? We want to let the -- if we teach the family, then they will become the advocates that they need to be for their children and be able to reach out to other families and advocate. So it will end up being a continuum. >> I would like to add, I agree to that. I think a challenge that I find is that the community that I work with, they didn't know what the system is. They didn't know what we're talking about. We tell them oh, you know, we have to enroll you, you have to be within the system. There's all this help. Well, they don't know what they don't know. The system here looks different than the system in their countries or cultures or communities.

I found if we educate the family and empower them that way, their ability and willingness to get involved is much higher and benefits them in a much more meaningful way. >> Janet DesGeorges: Thank you. I think the next question I ask was around why families should be involved in the system. But I know many of you are going to be on the airplane going back and we know that you need practical suggestions and tips about how to engage families in your state work and territory, state and territory work. So you can embed the why into this next series of questions.

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Share with us the opportunities that you were given by professionals and agencies that welcomed parents and caregivers to the table and insisted they be an integral part of the EHDI system. Or describe, don't worry, we'll get to the challenges part, but describe a time you felt supported and encouraged as a parent leader, either by other professionals or other parents. Who would like to answer that? >> Mariana Barquet: I have never felt better in my life than when my boss believes that I can do something that not even myself believes I can do. But that she has given me full power and confidence in what I believe my mission is. When I think about the families I work with, when you give them that feeling of I know you can do it and I believe you can do it, no matter how you present yourself, no matter how you were treated, no matter what doors are closed and barriers you face, they will step up to the plate. >> Laura Gramer: I'd like to also respond. My experience was more negative, but I'm going to try to change that for this time to discuss the positive parts. When we have this state EHDI system involved, and I think it's important that we use the term that the parents are deaf, not that the parents have -- or that the child has actually failed a hearing test. So I understand that it's a medical need for people to discuss the cochlear implant and to discuss the hearing aids and all of these other things that need to be discussed, but it's really important that we also discuss the deaf community and have deaf professionals involved. That way it isn't a surprise later and they're not dismissing an option before it becomes something that we can do.

So once a child is identified, it's important that we start working on language right away. We need to address language as the issue, and maybe in the future we can discuss more of the other options and the medical issues. Because sometimes it seems like parents are just being approached about the medical advice and the speech skills and all of that, and the parents need to equally know about the linguistic needs.

That part of the information is rather small right now, and so -- but I've had positive experience with that, because I have met people in the system who were able to give me that kind of information, because their agencies were supportive. So that's part of what I wanted to share right now.

I think it's time for a change in today's day, that we include more and be open more to balancing the linguistic needs for the parents. >> Janet DesGeorges: Thank you. Either one of you want to talk about what supports you were given in order to be an effective advocate in the system? >> Djenne-amal Morris: I think I was just thrown out there. [Laughter]No, really a couple of things come to mind when I started working, when we moved to North Carolina 12 years ago, we were in -- we had been part of our system in Boston. I was looking to get involved in the system in North Carolina. Working at Beginnings I was -- Joanie Alberg, she's out there, I have to give you a shout-out, we sat at a parent meeting. She looked at me, she says, Well, I don't have anything right now for you, but hold on. Six months later, she says, OK, you can do this. I had three young children at home, and my goal was to raise them. Malik is deaf plus, and he has a lot of things

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going on. I said, I don't know if I can do this, because I have to take care of Malik and his needs. I might need to leave work. She said, This is a family friendly place. You are a leader. We need to hear your voice. We need parents to have the power of perspective and to really be an example for families.

Through my work at Beginnings, it made it possible to be a parent, and raise my children and meet their needs, but also to give, again, give back to the families what I had received.

Through that, we started a program where we were training, doing different trainings. One of the wonderful things was I was able to work with the early intervention teachers in North Carolina and talk to them as a parent as well as a professional, wearing both hats, because they had challenges and questions they didn't know how to answer in working with a family. They knew their job, but there were things that -- what do you do when you walk into a home, a child has multiple issues, for example? Or the families, like you said, don't understand the system because they're not from here.

So we were able to do a lot of wonderful trainings and have those difficult conversations in a safe environment. I can't tell you, I really respect the early intervention teachers that I've worked with in North Carolina, because they continue to come back and say to all of us, I have this issue. Can you help me? Can you come back to the home? Can we partner? Can we collaborate and work together to meet the needs of the family so that the child can do his best? >> Janet DesGeorges: I hear a thread in this conversation about the attitude of the professionals that were welcoming us as parents into the system. For me, I think about it that it was really the professionals in my life that opened the door, but it was really the other parents in my world that gave me the confidence and the modeling of how to be engaged in the system. So I think about the training of parents. I don't know, Karen, do you want to add? >> Karen Wisinski: I want to add to that, because when I came into this, I didn't know if my son was deaf enough in order to be able to have value in the process, and the encouragement I received, particularly through a whole huge team of mentors in Hands & Voices was very encouraging for me. Then on top of that, I was working in, and am working, in the Michigan EHDI office one day a week. The encouragement I received from them, first of all, they paid me -- [Laughter]-- second of all, they gave me flexibility, and that was huge, because when you do have a child with special needs, you need some flexibility. So that's really key.

So I had both Hands & Voices supporting me and recognizing when I was able to do good work. And EHDI too supporting that, supporting what Hands & Voices did for us. >> Djenne-amal Morris: I think Janet and I are children of the oldest on the panel, so -- we had a conversation this morning, Malik will be 21 this Saturday, so I'm kind of on the other spectrum. I wanted to share, as I personally moved out of the EHDI system, I can be a part of the system and helping, but my work with Hands & Voices, with Janet and Leanne kind of grabbing me, because my question was what's next? I always want to

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know what's next for me as a parent leader. How can I effect systems and meet the needs of families nationally. You reminded me, the work with Hands & Voices, being put, Come on, join us! Join our work in supporting families nationally is important. I wanted to make sure I said a thank you for that. >> Janet DesGeorges: There are two Hands & Voices parents, this sounds like the start of a joke. It's not. There are two Hands & Voices parents leaders coming towards our exhibit table last night. One said to the other, Get ready to get hugged. Not mugged, hugged. Whether it's Hands & Voices or other family-based organizations, the power of the collective. I didn't have an alumni association from a university in my profession to go get in-service training from. It's the collective force of parents and how we serve as peers to one another in order to learn and grow as effective change agents in the system.

What other practical suggestions do you have for, say for instance, the EHDI coordinators here in the audience are going back and need to engage more parents in the work that they're doing? What are some ways that you have seen successful or you can mention challenges, but practical tips for engagement? >> Karl White: I say send more parents to conferences -- >> Karen Wisinski: I say send more parents to conferences. I think that helps quite a bit. I think -- sorry. Building up the network of parents in your state. So if you don't have a chapter of Hands & Voices or don't have parent-to-parent organization of some kind, building that up sort of feeds into then getting family engagement. So you have to build it and they will come. I think starting with a couple of parents who you can encourage and mentor and pay, you will eventually they'll build, by going to the conferences, they'll start learning how to be parent leaders, and he they will build up the network, and that gross the family engagement. >> Janet DesGeorges: Mariana or Laura? >> Laura Gramer: I have to -- sorry, we're ready. Technical difficulties. I agree, sending more parents to conferences. I can say what's happened in my state, I don't know of other states, but get more deaf people in the system. And deaf mentoring. And possibly working with other organizations within the state to develop a deaf mentoring program for parents. Some of your states have Hands & Voices. You welcome parents of deaf children into the profession, and I think that really helps build that collaboration.

Also, I know that some states, some states have, like in Washington, have urban and rural areas, and parents have to travel long distances to get involved. So we need to develop local resources, and possibly partner with them to be able to share information with parents at a distance. There's lots of opportunities out there. Whatever resources are out there, we need to take advantage of. >> Mariana Barquet: I would like to add a little to what Laura said, collaboration. You said that word. My experience is that when culture, language, there's a barrier. When we get unified information from different sources, and it's based on the respect of choices and decisions made by the family, the outcomes are much better. When you have professional support, medical support, family support, and they all talk together, and they're all in agreement, and they all respect the family choice, the family feels so

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empowered, so good about the decision, so ready to take the next step, to commit, to be there for the appointment, to put on whatever choice of technology they have, to take on learning a new language.

When all those professionals and family members work as a team, the outcomes are amazing. They are truly -- we would go like, Oh, my goodness! We made it!

So we were very lucky in our personal situation, where we have eight different early intervention therapists at our house every week. My son had 11 therapists a week. The speech pathologist, the deaf mentor, the OT and DT and listening spoken language therapist through the internet. We just make a huge effort so that they knew each other and could talk, and they could coach me the best way possible in -- and everyone had the best interest in mind for my child. I'm immensely grateful to every one of them for taking that every on themselves to work as a team. >> Karen Wisinski: I want to add that sometimes we live in areas where we're not that lucky to have all of that, and I think having the family and professionals and deaf and hard of hearing individuals, whoever else we need, if we can pull people in that even if they aren't real close to us, to have that diverse experience represented and talking about how can we creatively get the services we need for that child, you're more likely to get the creative solutions if you can pull opinions and suggestions from different types of people, especially when the parents are involved. >> Djenne-amal Morris: Really quickly, I agree with what all three of you said. It has to be intentional. It has to be planned. It sounds nice, but if it's not intentional, where you have the parent/professional collaboration and opportunities created for both to come together, sit at the table and learn from one another. So the question is what can EHDI coordinators do? Create those intentional opportunities and invite everyone to the table. >> Janet DesGeorges: That would serve true for all of the stakeholders in the system, with physicians, early interventionists, EHDI coordinators. Some of the threads I'm hearing in terms of we haven't said it intentionally, but in terms of financial support or creating the opportunity for families so that it's not only not a financial burden that they had to pay to participate, because of childcare and transportation, but that the system has put a value on their participation and includes that value in financial compensation.

A parent leader yesterday made a really similarity suggestion, that there is no real magic bullet here, but she said her state had her do the calling to other parents to get them involved, and they all said yes. Sometimes the ask, you got to think about who is doing the ask, because she says she was able to connect with a parent and really give them a really good definition of what they needed by having more parents in the system.

When you said intentional, I also thought of written, articulated, clear, so that families know what the opportunity is. Yeah? >> Laura Gramer: I would like to add to that, when she was speaking a moment ago, it made me think I wish we had less divisiveness and we have lots of different groups that I work with themselves, but if we can all communicate with one another within the system, we see a parent who has a problem and we want to bring everyone together. We really all do have experiences to share, and we have similar issues. We don't need

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to be afraid of one another. Our kids are going to grow up. We don't want to teach one child to be afraid of another child. We want everyone to be part of the same community and the future and come together.

So we need to break down those barriers keeping us apart from one another and our kids apart. >> Janet DesGeorges: Thank you. We have very few minutes left. We would like to open the floor for questions. If you have a question you'd like to ask, think about it. You need to come either to a microphone or come forward, make sure the interpreters can see you. >> Good morning! Wonderful job. Let me position myself so you can see me. Wonderful job. Appreciate it so much you sharing your experiences with us this morning. Thank you for that. I have two daughters myself, they are now 27 and 26 years old. So I have gone through the early intervention system as a parent myself. Seeing all of you on the panel this morning, I kind of think that there's pretty much the same experience from 27 years ago to today. Some of you mentioned the division, the different groups, different services, the doctors not having complete and comprehensive information to share. There's variety of issues that have not changed in all of these years. I'm becoming concerned. How can we make actual effective change, so that 20 years later we will not encounter the same situation? Hands & Voices is a wonderful organization, and there are chapters in every state. I'm wondering, you have all shared wonderful resources and parents have resources and the organizations have resources, and the community at large has resources. But what is our next action? What is our next action plan so that we can work together to actually make movement on this? To connect -- >> Janet DesGeorges: I got the question, yeah. Thank you. The question is thinking of the past and where we've come from, where we're at today, and thinking of still even after all this time there's still different answers to the same questions people bring, how can we move forward together? And particularly in the context of family engagement, what do families have to say or what is our role as families in terms of movement forward in the future? >> Mariana Barquet: I would like to say, the families I work with, for a strong Hispanic culture standpoint, you have a deaf son, a deaf child, it's a big leap of faith. You're asking them to change cultures. I can say that will not happen. That we will never resign our Hispanic culture. We're very strong and proud of it won't happen. I tell every one of my families, Please, take the services. Learn. Listen. Look. It may work for you. Don't turn your back on them as a default. No matter what you hear, do it on your own home. Do it on your own family. You can learn so much from every single professional. Even if you agree or you don't, it's not a matter of agreeing or not.

Learn from both sides. Learn from every side, because I assure you you will learn a lot from the most unexpected sources. We have had a pretty good result of them opening their homes and learning. Then when I know they have made a choice, I've seen them take a couple steps back and be, Oh, let me think about this. Let me make sure I'm doing the right thing.

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Even if not changing their opinion always, but they do take the time to think it thoroughly and make a good choice. >> Janet DesGeorges: One more question. Is there a burning question? OK. You will need a microphone. >> Well, it is not really a question. It's a comment to what you say. I am a Hispanic early interventionist, and I have found that when you go into a home and you are culturally sensitive and you have an understanding of the culture and you respect that culture, families are more willing to work with you. It's not about asking -- I've seen families not wanting to see a professional because they put their culture down, saying, Oh, carrying the child on your back, that's wrong, they never learn how to walk. That is an opportunity to input language. We can use those differences that are not really deficits in order to help the families.

The other thing that I found is that we can help those families to become leaders. Some of my families are going now to school, some are pursuing careers in that area, some are advocates now. And I think that's the next step. They should be the leaders of tomorrow. >> Janet DesGeorges: Thank you. Yes. I want to thank the panelists here today. I think about the family engagement empowerment not as a linear process for families, but as a circular one. Karen and I were talking about this a little bit this morning, that really the purpose of parent empowerment leads to professional empowerment, that parents are part of the system to also empower professionals to do so that we're co-producing the system together.

Ultimately, at the end of the day, when I read the list of the names of our children and all the children represented here in the audience in all the places that we work, ultimately, the system needs to work at the end of the day for our children so that they can come out successful, happy, thriving, human beings. I know that is the goal for everyone here.

As you move through your next two days here at this conference, thinking about not family engagement as an add-on piece to all the work that you have to do, but understanding that engaging families and caregivers in the work we're doing will ultimately create a system that we're all here for, to ensure the integrity of success for all of our children who are deaf and hard of hearing.

So thank you very much, panelists! I know we could go all day. Oh, my gosh! There's a whole bunch of other questions we didn't get to. Thank you so much. [Applause]>> Karl White: Thank you. Why don't you stay right there for a moment. Wow! What a great example of empowered parents, but that the empowered parents make the system so much more powerful and effective. I hope you will all remember that in addition to these five wonderful parents up here, there are 153 other parents here at this meeting who are equally capable and help to make the system so much better. [Audio difficulty]I hope you will all reach out to become -- to be the parent you haven't met yet, engage them in some way in your part of the system, because parents really are at the core of

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what you are doing, need to do and we can't do it without you. So thank you so much. If Djenne will stay here, oh, I should mention one other thing, Janet DesGeorges, as executive director of Hands & Voices, is the principal investigator now for a new cooperative agreement that will be funded by MCHB, the Family Learning -- >> Janet DesGeorges: Family Leadership in Language and Learning. >> Karl White: I choked at the last moment! [Laughter]The FL-3 cooperative agreement. That's going to give a whole new push to engaging families. So congratulations, Janet. We look forward to working with you. [Applause]Thanks again to all of the great panel members. We also have the privilege this year to announce the first Family Leadership Award. We wanted to do something special to recognize the many different families involved in providing more effective services to children who are deaf and hard of hearing. We called for nominations. Several months ago. We asked you to nominate parents who were particularly effective in providing services to children and being involved in the EHDI system. There were 14 nominees. Not all of them were able to be here today, but most of them were. I'd like to invite the people listed on the slide to come up to the stage so we can announce the recipient of this new Family Leadership Award. Lisa Adams, Andrea Amestoy, start coming up. Hold your applause until they're all up here. Cheri Dowling. Darlene Freeman. Janel Frost. Hadley Haas. Robin Hosley. Shelli Janning. Sara Kennedy. Candace Lindow-Davies. Kodi Ogle. Terri Patterson. Tony Ronco. Yuliana Trujillo. [Applause]Join me in giving all of these people a round of applause. [Applause]So in addition to the actual award, for all of these nominees, we have a copy of a book entitled "Daring greatly." The title comes from a speech given by Theodore Roosevelt many years ago, in which said the honor and accolades for doing something go to the people who are engaged, instead of those sitting on the sidelines. Then he encouraged all of us to dare greatly to do good things for the society in which we live. All of these people have dared greatly, and we're so appreciative of that.

I'm going to -- we'll be passing out the books, but I'll turn the mic to Djenne to announce the winner of the Family Leadership Award. >> Djenne-amal Morris: Each book has the person's name, and we wrote a special tribute to them in the book.

I just want to commend all of you, because you have dared greatly, you've dared greatly to stand up for your children, for other children, for the system, to make it great and to make it what it is today. Even the last question I was thinking about I know Beth has older children, but we are, what you see here today, what you see in the audience, this is what is going to keep it going. We are what is going to keep it going. I know we can feel like we're doing the same thing over and over again, but as long as we can show up as parents, as professionals, as service providers, every day to work, to work with our children, as long as we can show up to conferences like this, to network and to

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collaborate with the parents that we have and the professionals that we have, then we will move forward. We will make tomorrow bedroom for the children that we have.

So this award, I'm really excited, this is the Family Leadership Award, the first year we're doing it. It honors a parent or family member of a child who is deaf and hard of hearing for providing exemplary leadership in their EHDI system. This was very hard to choose, because all of you have provided exemplary services to the children and families within your EHDI system. But of course, we can only choose, the first leader that we chose was Lisa Adams from Massachusetts. She could not be here today. So we will make sure she gets that. Then the next award, this is a beautiful award, it's the families holding one another, the next award I'd like to present to Janel Frost. [Applause]This is the Academy Awards here. [Laughter]Would you like me to hold that for you?>> Janel Frost: Yes, please. Are you sure it's me? There hasn't been a mistake? [Laughter]I don't know what to say. I'm just honored to be up here with these people, because I know what they all put in, and I'm just doing what I love. This is really for my brothers. They brought me into this. They were the ones that I saw my parents fight for, and I learned from a very early age that if you can do better, you do. And my parents believed that a disability didn't stop you from being all you can be. It wasn't who you were. It was just something that was a part of you. And having a son that brought me to this world of the deaf and hard of hearing world has been a wonderful experience for me, because I was able to put everything that I learned from my family and fight for my son and then for other parents and other families, to really believe in themselves and to really see the potential in every human being.

So I just thank you for this. It's an honor just to be here and be a part of what all of you are doing. Thank you. [Applause]>> Karl White: Families really are what it's all about. So join in giving them one more round of applause. [Applause]OK. Thanks so much. We're going to take a moment now. I invite Vicki Hunting up and to share with you the planning for the stakeholder meeting, the state stakeholder meeting. This is a very important part. As much as you enjoy networking and you've been challenged to get to know others you don't know, we hope you do that at some point, but we hope you won't skip the state stakeholder meetings do to it. >> Vicki Hunting: Good morning. To see everyone again. I can't really see out there. I just know you're there. OK. Hopefully, you have already had a chance to see some old friends and catch up with them and meet new ones already. Since you've arrived. First, I'd like to take a second to introduce your state Stakeholder Planning Committee. You don't have to stand up or come up. Raise your hand or wave. We have EHDI coordinators Marcia Fort from North Carolina and Linda Hazard from Vermont, we have

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Kelly Dundon from Georgia, we have Tammy O'Hollearn from Iowa. Sorry, I'm going too fast. Lots of names. Gayla Guignard from AG Bell. Sadie Silcott from HRSA. Then we had two students this year that we were pleased to have on the committee, so glad they were here this year, Megan Bilodeau and David Kessler from Tennessee. My name is Vicki Hunting. In a few minutes, you have the opportunity to provide, as individual stakeholders in your state and territory, EHDI systems, to commit to activities to help further the system back home. As an individual, it's important for you, as parents and students and providers and professionals in the system, to understand the current status of your state, territory, or country's EHDI system. It's important for you to determine how to use the share the information you're going to learn in the next couple of days and how to figure out how to apply it in your EHDI systems. It's also important for you to continue to build on and expand your collaboration and networking.

This time together during the state stakeholders session will help you to consider how to best contribute to the ongoing development and enhancement of your EHDI system.

We ask that you take time to jot down the new ideas and most important information that you learn so that your learning can be used to enhance your state's EHDI system when you return home.

In addition, be sure to share those ideas and information with EHDI leaders and colleagues in your state and territory.

Your feedback is valuable to us. That information helps us in planning for next year's federal grantee meeting. Each year, thanks to your input, we have tweaked the state stakeholder format a little bit. So please take the time to fill out that particular evaluation.

You can do that either on hard copy, which are available, and also via the EHDI app. You can find that there.

The state stakeholders meeting locations were in your registration booklet. I know you can't read this, but you can see it is the light gray. So this is where your meeting spaces are going to be. On the back then you will find a little more detailed information about state stakeholders.

EHDI meeting staff will be available to help you find your designated meeting space and will also be circulating throughout the next 90 minutes. So if you have questions or need assistance, then flag them down.

It's a little different here in Atlanta. It's not as warm and toasty as it was in San Diego so, if you decide to move your group to a different location, please leave a note so people that may come a little later will know where to find you.

Thanks for your time this morning. Enjoy yourselves at the meeting. Catching up with old friends, and new ones, and meeting new people and learning new ideas to improve your EHDI system. Karl, if there's nothing else. >> Karl White: I have a couple of very short things, housekeeping things. I didn't want to detract from that wonderful plenary by inserting them earlier.

If you're presenting a breakout session, and you haven't gone to the speaker ready room yet, please do so very soon. Don't wait until the last minute. The speaker

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ready rook is there to make sure all of the technology works the way it should. It's located in Chicago E, which is one floor down from the ballroom. We hope you will get there as quickly as you can.

Reminder, for lunch today, the food court attached to the hotel has a variety of options. There's also the market, which is here within the Hyatt. So we hope you will grab your lunch and come back for the poster sessions that start at 12:45. Then we've also planned a number of new activities this year for students and parents and families. They're in your program app. Check it out there. We hope you will support those.

For the early risers in the group, we had roundtable sessions this morning, starting at 7:00. There will be roundtable sessions again tomorrow morning at 7:00. So that's an opportunity to network.

And we're off to a great start. We look forward to getting to know more of you. We hope you enjoy this time together and take home some concrete things to work on. So thanks for coming! [Applause]