WEBVTT 1 00:00:00.000 --> 00:00:02.315 2 00:00:02.335 --> 00:00:03.116 Good morning. 3 00:00:03.136 --> 00:00:05.218 I'm delighted to be here. 4 00:00:05.238 --> 00:00:08.321 With the exception of my wife, my children 5 00:00:08.341 --> 00:00:12.592 and my grandchildren and just recently, my first great grandchild. 6 00:00:12.612 --> 00:00:16.696 You are my favorite. 7 00:00:16.716 --> 00:00:17.297 Speaker 8 00:00:17.317 --> 00:00:22.035 and I have learned so much over the years and had the privilege 9 00:00:22.055 --> 00:00:25.905 of being involved in such a grand program. 10 00:00:25.925 --> 00:00:30.176 So thank you for allowing me that opportunity 11 00:00:30.196 --> 00:00:33.947 for or the last 35 or 40 years 12 00:00:33.967 --> 00:00:36.916 prior to the time we had this conference. 13 00:00:36.936 --> 00:00:42.055 So I invite you to think with me 14 00:00:42.075 --> 00:00:46.126 about why EHDI has lasted for 25 years 15 00:00:46.146 --> 00:00:50.363 and why it continues to thrive. 16 00:00:50.383 --> 00:00:51.965 As good as any years. 17 00:00:51.985 --> 00:00:53.233 It is like a family. 18 00:00:53.253 --> 00:00:56.136 We've heard that over and over in this conference 19 00:00:56.156 --> 00:01:01.007 and like all big families, there have been some bumps along the way. 20 00:01:01.027 --> 00:01:05.245 There have been some disappointments with funding, some uncertainty with funding. 21 00:01:05.265 --> 00:01:09.783 There have even occasionally been unkind words spoken. 22 00:01:09.803 --> 00:01:11.351 Motives questioned, 23 00:01:11.371 --> 00:01:14.187 Facts misrepresented. 24 00:01:14.207 --> 00:01:18.191 But because we are all committed to the same goal, 25 00:01:18.211 --> 00:01:20.360 for the most part, we reconciled 26 00:01:20.380 --> 00:01:24.431 and we continue to do it together. 27 00:01:24.451 --> 00:01:27.700 Through it all, we've been given the wonderful opportunity 28 00:01:27.720 --> 00:01:33.073 to help children and families live more fulfilled and happy lives. 29 00:01:33.093 --> 00:01:35.909 And what more can you ask for in life 30 00:01:35.929 --> 00:01:39.312 that you gave to through those sorts of things? 31 00:01:39.332 --> 00:01:43.750 So for 25 years, we've held this conference 32 00:01:43.770 --> 00:01:45.885 and we've learned a lot, 33 00:01:45.905 --> 00:01:49.022 but we still have a lot more to learn. 34 00:01:49.042 --> 00:01:53.460 And one of the most important things I think we need to focus on 35 00:01:53.480 --> 00:01:56.463 is that everyone here doing it 36 00:01:56.483 --> 00:01:59.466 together is really what makes it here. 37 00:01:59.486 --> 00:02:04.604 And what has allowed us to be as successful as we have 38 00:02:04.624 --> 00:02:06.973 Janet mentioned that we have posters 39 00:02:06.993 --> 00:02:10.810 throughout the corridors of people who have 40 00:02:10.830 --> 00:02:15.315 made notable contributions. 41 00:02:15.335 --> 00:02:16.983 When we decided to do that, 42 00:02:17.003 --> 00:02:21.087 we thought it was an easier task, than it turned out to be. 43 00:02:21.107 --> 00:02:24.524 And we've certainly left people out 44 00:02:24.544 --> 00:02:28.528 that deserve to be included. 45 00:02:28.548 --> 00:02:32.165 And we want you to think about that. 46 00:02:32.185 --> 00:02:36.636 Reflecting upon the accomplishments of the people who are on posters, but 47 00:02:36.656 --> 00:02:41.374 also to think about the accomplishments of people who are not yet listed. 48 00:02:41.394 --> 00:02:43.443 And as you think about their accomplishments, 49 00:02:43.463 --> 00:02:47.514 I hope you will remember what Helen Keller said. 50 00:02:47.534 --> 00:02:51.251 The world has moved along not only by the mighty shouts 51 00:02:51.271 --> 00:02:54.821 of its heroes, but also by the union of tiny 52 00:02:54.841 --> 00:02:58.992 pushes of each other toward that. 53 00:02:59.012 --> 00:03:01.094 I am so grateful to have been 54 00:03:01.114 --> 00:03:05.598 accidentally pulled into this field 35 years ago. 55 00:03:05.618 --> 00:03:10.603 I was actually trained as a statistician for my graduate degree work at, 56 00:03:10.623 --> 00:03:15.608 and it was just a happy series of coincidences 57 00:03:15.628 --> 00:03:21.648 that got me involved, and early identification of hearing loss. 58 00:03:21.668 --> 00:03:24.651 So it's not only the 59 00:03:24.671 --> 00:03:29.389 individuals who we recognize as heroes, 60 00:03:29.409 --> 00:03:33.193 but it's also the honest workers I want to focus on. 61 00:03:33.213 --> 00:03:35.862 in Helen Keller’s quote 62 00:03:35.882 --> 00:03:40.733 These are the people who have to move things forward. 63 00:03:40.753 --> 00:03:44.704 And to you, I am very grateful. 64 00:03:44.724 --> 00:03:46.906 It's also the organizations, 65 00:03:46.926 --> 00:03:50.443 such as those next door in the exhibit hall. 66 00:03:50.463 --> 00:03:53.012 Time does not permit me to even name 67 00:03:53.032 --> 00:03:55.748 all of the wonderful organizations. 68 00:03:55.768 --> 00:03:59.319 But let me give you just one example of an organization and working 69 00:03:59.339 --> 00:04:04.657 to improve the lives of deaf children for more than 150 years, 70 00:04:04.677 --> 00:04:09.095 Has been a regular attender, and has sponsored this conference. 71 00:04:09.115 --> 00:04:12.865 Gallaudet University was established during the administration of Abraham 72 00:04:12.885 --> 00:04:16.803 Lincoln, and has continued their work since that time. 73 00:04:16.823 --> 00:04:22.793 Watch this quick video. 74 00:04:22.813 --> 00:04:34.387 75 00:04:34.407 --> 00:04:40.377 And you. 76 00:04:40.397 --> 00:05:19.198 77 00:05:19.218 --> 00:05:19.799 So, as I 78 00:05:19.819 --> 00:05:23.102 mentioned, that's only one of the many organizations. 79 00:05:23.122 --> 00:05:27.507 But I think it's worthwhile to pause and reflect for the about 80 00:05:27.527 --> 00:05:30.643 where we would be without all of the wonderful organizations 81 00:05:30.663 --> 00:05:34.781 that have continued to provide us with structure and encouragement. 82 00:05:34.801 --> 00:05:37.150 We need to gather more. 83 00:05:37.170 --> 00:05:38.651 Into that fold. 84 00:05:38.671 --> 00:05:42.255 We have 45 exhibitors next door. 85 00:05:42.275 --> 00:05:46.526 There's really no reason why we don't have 60 to 75. 86 00:05:46.546 --> 00:05:51.464 And by coming to this conference, those that are here renew their energy 87 00:05:51.484 --> 00:05:55.902 and their commitment to serving deaf children and their families. 88 00:05:55.922 --> 00:05:58.871 Now, in preparation for sharing some thoughts with you 89 00:05:58.891 --> 00:06:02.709 about the state of EHDI and where we're going and where we’ve been. 90 00:06:02.729 --> 00:06:07.146 I want to provide a couple of historical contexts for you. 91 00:06:07.166 --> 00:06:10.249 The first one comes from William Shakespeare, 92 00:06:10.269 --> 00:06:13.820 who wrote in the play, The Tempest, 93 00:06:13.840 --> 00:06:16.656 “What's past is prologue.” 94 00:06:16.676 --> 00:06:20.526 What to come, in yours and my discharge?” 95 00:06:20.546 --> 00:06:24.564 Now, almost everyone here has heard the first half of that quote. 96 00:06:24.584 --> 00:06:25.998 “What's past is prologue” 97 00:06:26.018 --> 00:06:27.066 And it's important 98 00:06:27.086 --> 00:06:32.572 because it does lay a foundation for where we are and where we need to go. 99 00:06:32.592 --> 00:06:35.742 But I think the more important part of the that quote is 100 00:06:35.762 --> 00:06:39.312 “what to come, in yours and my discharge...” 101 00:06:39.332 --> 00:06:41.881 and it's individual people. 102 00:06:41.901 --> 00:06:45.351 It's the honest workers that Helen Keller referred to 103 00:06:45.371 --> 00:06:49.489 that have made EHDI what it is today. 104 00:06:49.509 --> 00:06:51.457 The “what’s past is prologue” 105 00:06:51.477 --> 00:06:56.162 as engraved on the National Archives building in Washington, D.C., 106 00:06:56.182 --> 00:06:59.832 but that the second part sometimes gets lost. 107 00:06:59.852 --> 00:07:02.468 I'll return to that concept in just a moment. 108 00:07:02.488 --> 00:07:08.458 But first, another story told by Supreme Court Justice William Douglass, 109 00:07:08.478 --> 00:07:09.475 110 00:07:09.495 --> 00:07:12.645 several decades ago, 111 00:07:12.665 --> 00:07:14.814 Justice Douglass was riding 112 00:07:14.834 --> 00:07:18.418 from the airport to his office in a cab. 113 00:07:18.438 --> 00:07:20.987 And as they pass the National Archives building, 114 00:07:21.007 --> 00:07:26.893 he indicated to the cab driver that quote, “What’s past is prologue”, 115 00:07:26.913 --> 00:07:30.463 And he said, what do you think that means? 116 00:07:30.483 --> 00:07:32.698 And the cab drivers in Washington, DC 117 00:07:32.718 --> 00:07:36.169 have a reputation for having an opinion about everything. 118 00:07:36.189 --> 00:07:41.374 And he thought for a moment, and then he said, 119 00:07:41.394 --> 00:07:45.711 that means we ain't seen nothing yet. 120 00:07:45.731 --> 00:07:46.546 And that is true of EHDI. 121 00:07:46.566 --> 00:07:50.550 We're only beginning to realize 122 00:07:50.570 --> 00:07:54.787 the profound impact that EHDI programs have for tens 123 00:07:54.807 --> 00:07:58.624 and tens of thousands of children have already had. 124 00:07:58.644 --> 00:08:02.328 But there's much more that we all need to be doing. 125 00:08:02.348 --> 00:08:06.566 And I hope with my words today, I will get each one of you 126 00:08:06.586 --> 00:08:11.270 to think about one little bit or a medium sized thing 127 00:08:11.290 --> 00:08:17.143 that you can become engaged in next week or next month or next year. 128 00:08:17.163 --> 00:08:17.577 I'd like to 129 00:08:17.597 --> 00:08:20.680 provide another piece of context. 130 00:08:20.700 --> 00:08:23.349 Some of you saw some of these slides 131 00:08:23.369 --> 00:08:26.819 last year, but it's central enough to what I'm talking about. 132 00:08:26.839 --> 00:08:29.922 I want to briefly, 133 00:08:29.942 --> 00:08:33.526 this is my father. 134 00:08:33.546 --> 00:08:36.596 He was a real cowboy. 135 00:08:36.616 --> 00:08:39.832 He was also a veterinarian. 136 00:08:39.852 --> 00:08:43.402 He was also a great father for this little boy. 137 00:08:43.422 --> 00:08:48.674 From the time I was old enough to walk, I rode horses. 138 00:08:48.694 --> 00:08:52.512 And as I got a little bit older, sometimes the saddle didn't fit 139 00:08:52.532 --> 00:08:58.417 and the horses were bigger, and sometimes they were completely untrained. 140 00:08:58.437 --> 00:09:00.753 We had about 80 head of horses 141 00:09:00.773 --> 00:09:05.992 at one time, when I was about eight years old, when my father said, 142 00:09:06.012 --> 00:09:08.628 every horse in the place is for sale. 143 00:09:08.648 --> 00:09:13.833 You train them and you can sell them and put the money in your college fund. 144 00:09:13.853 --> 00:09:15.801 Our horses weren't purebred horses. 145 00:09:15.821 --> 00:09:16.802 They were mutts. 146 00:09:16.822 --> 00:09:18.204 But they were great horses. 147 00:09:18.224 --> 00:09:20.506 And they taught me a lot. 148 00:09:20.526 --> 00:09:26.345 And as I got older, I went on pack trips frequently with my family. 149 00:09:26.365 --> 00:09:29.515 And then I was lucky enough to 150 00:09:29.535 --> 00:09:31.217 meet a lady who loved horses 151 00:09:31.237 --> 00:09:34.020 as much as I did. 152 00:09:34.040 --> 00:09:35.621 And then as our children 153 00:09:35.641 --> 00:09:39.058 came along, they rode horses. 154 00:09:39.078 --> 00:09:40.826 As grandchildren came along 155 00:09:40.846 --> 00:09:43.496 they rode horses, 156 00:09:43.516 --> 00:09:45.665 and pretty soon 157 00:09:45.685 --> 00:09:49.402 we ran out of horses. 158 00:09:49.422 --> 00:09:54.173 There were more grandkids than children, so they had to take turns. 159 00:09:54.193 --> 00:09:56.842 Now, I want to tell you a short story about this horse. 160 00:09:56.862 --> 00:09:58.811 Her name was Spindles. 161 00:09:58.831 --> 00:10:01.847 I was responsible for training Spindles. 162 00:10:01.867 --> 00:10:04.483 And one day - we lived in Northern California - 163 00:10:04.503 --> 00:10:06.752 And one day in the wintertime, 164 00:10:06.772 --> 00:10:09.956 My father said, we need to go on out to the back 165 00:10:09.976 --> 00:10:13.092 40 and check the horses that we put there. 166 00:10:13.112 --> 00:10:14.860 And that required us to cross 167 00:10:14.880 --> 00:10:18.097 What was normally a little creek was about 168 00:10:18.117 --> 00:10:21.267 ten feet wide and about six inches deep. 169 00:10:21.287 --> 00:10:23.703 But there's been a lot of rain in Northern California. 170 00:10:23.723 --> 00:10:27.807 That year, and when we got to where the creek was, about half 171 00:10:27.827 --> 00:10:32.945 a mile from the ranch house, I could see it was huge. 172 00:10:32.965 --> 00:10:35.548 And it was, I thought, at least 100ft 173 00:10:35.568 --> 00:10:38.618 wide and I couldn't see the bottom. 174 00:10:38.638 --> 00:10:41.721 And my father rode down in the creek with this big 175 00:10:41.741 --> 00:10:45.491 black horse, and I stopped and I said, what do I do? 176 00:10:45.511 --> 00:10:49.195 And he said, to ride down into the creek. 177 00:10:49.215 --> 00:10:52.164 And so he said, when you do that, 178 00:10:52.184 --> 00:10:55.468 lift your feet out of the stirrups, and just perch on top of the saddle, 179 00:10:55.488 --> 00:10:58.971 and you'll stay pretty dry and you'll be fine. 180 00:10:58.991 --> 00:11:01.841 And so I did, and we went out 181 00:11:01.861 --> 00:11:06.912 and checked on the horses in the back, and we came back, came to the same creek, 182 00:11:06.932 --> 00:11:08.614 And this time I was smart. 183 00:11:08.634 --> 00:11:10.049 I knew what to do. 184 00:11:10.069 --> 00:11:12.918 And so as my horse started out into the 185 00:11:12.938 --> 00:11:16.389 what I thought was the raging river, 186 00:11:16.409 --> 00:11:20.726 I pulled my feet out of the stirrups and perched up on top of the saddle, 187 00:11:20.746 --> 00:11:23.295 but my horse was smarter than I was, 188 00:11:23.315 --> 00:11:26.332 and she was waiting for that opportunity. 189 00:11:26.352 --> 00:11:29.201 And so as soon as I got my feet out of the stirrups, 190 00:11:29.221 --> 00:11:34.874 She shook and bucked a little and tossed me into the creek or the river as I thought it was. 191 00:11:34.894 --> 00:11:37.843 And I had my big winter coat on, my chaps, 192 00:11:37.863 --> 00:11:41.747 my boots, and I immediately 193 00:11:41.767 --> 00:11:43.649 assumed that I was going to drown. 194 00:11:43.669 --> 00:11:45.117 Right there. 195 00:11:45.137 --> 00:11:49.221 My father watched, and I started flailing 196 00:11:49.241 --> 00:11:52.291 and doing my best to get to the shore. 197 00:11:52.311 --> 00:11:55.895 When I finally got there, my father looked down and smiled. 198 00:11:55.915 --> 00:11:59.065 I said, I don't know, I could have drowned. 199 00:11:59.085 --> 00:12:03.369 Why didn't you save me? He said I wasn't too concerned. 200 00:12:03.389 --> 00:12:07.840 He said, it's only three feet deep. 201 00:12:07.860 --> 00:12:11.410 And so the lesson I want you to think about 202 00:12:11.430 --> 00:12:14.880 is that we need to keep our perspective 203 00:12:14.900 --> 00:12:17.717 as workers in the EHDI program. 204 00:12:17.737 --> 00:12:22.121 We've had a lot of unexpected things happened to us in the last two years, 205 00:12:22.141 --> 00:12:26.592 and it's been easy to get discouraged. 206 00:12:26.612 --> 00:12:29.662 And that isn't where we need to be, 207 00:12:29.682 --> 00:12:33.265 and it's probably not going to change in the near future. 208 00:12:33.285 --> 00:12:36.168 We need to keep our perspective. 209 00:12:36.188 --> 00:12:38.170 So four things to 210 00:12:38.190 --> 00:12:41.941 think about as I move forward with this talk. 211 00:12:41.961 --> 00:12:44.543 What's past is prologue. It's important. 212 00:12:44.563 --> 00:12:46.212 It lays the foundation. 213 00:12:46.232 --> 00:12:51.016 We should never forget all the people that were on those posters outside, 214 00:12:51.036 --> 00:12:55.421 because they provide us with information and inspiration. 215 00:12:55.441 --> 00:12:58.290 And then moving forward with that. 216 00:12:58.310 --> 00:13:03.262 But equally important is what can come is in yours and my discharge. 217 00:13:03.282 --> 00:13:06.398 So we're the ones that need to keep moving forward. 218 00:13:06.418 --> 00:13:09.668 It doesn't matter what those others have already accomplished 219 00:13:09.688 --> 00:13:12.838 in terms of what has to happen next. 220 00:13:12.858 --> 00:13:14.707 The third thing to think about 221 00:13:14.727 --> 00:13:18.277 is that we have been targeted, that we ain't seen nothing yet. 222 00:13:18.297 --> 00:13:21.580 I believe in ten years we'll look back at the EHDI 223 00:13:21.600 --> 00:13:25.351 meeting in Jacksonville, Florida, and just be amazed 224 00:13:25.371 --> 00:13:29.221 at how different things are, how much more we’ve accomplished. 225 00:13:29.241 --> 00:13:32.291 We'll still have challenges and things we need to do, 226 00:13:32.311 --> 00:13:35.861 but it will be an incredible experience 227 00:13:35.881 --> 00:13:38.898 to look back and look forward. 228 00:13:38.918 --> 00:13:42.434 And then finally, to not lose our perspective. 229 00:13:42.454 --> 00:13:43.636 So I want to talk to you. 230 00:13:43.656 --> 00:13:46.872 This has been about Sir Isaac Newton, 231 00:13:46.892 --> 00:13:49.742 widely recognized as one of the most 232 00:13:49.762 --> 00:13:53.679 brilliant scientists of all time. 233 00:13:53.699 --> 00:13:55.147 He was once asked 234 00:13:55.167 --> 00:13:57.917 why he was able to accomplish so much. 235 00:13:57.937 --> 00:14:00.419 And he said, if I have seen further, 236 00:14:00.439 --> 00:14:04.123 it is by standing on the shoulders of giants. 237 00:14:04.143 --> 00:14:06.559 So out there in the hall, 238 00:14:06.579 --> 00:14:12.932 we have posters of about 65 different people. We’ve named them 239 00:14:12.952 --> 00:14:15.668 EHDI heroes. 240 00:14:15.688 --> 00:14:19.471 EHDI coordinator Hall of Fame 241 00:14:19.491 --> 00:14:23.442 the Family Leadership awardees, 242 00:14:23.462 --> 00:14:26.245 and the Maxon awardees. 243 00:14:26.265 --> 00:14:28.747 I hope you'll take time to read through. 244 00:14:28.767 --> 00:14:33.185 You know some of these people you won't know others. 245 00:14:33.205 --> 00:14:34.687 I’d like to go through all of them 246 00:14:34.707 --> 00:14:37.990 here, but let me give you just three examples. 247 00:14:38.010 --> 00:14:39.992 Judith Marlowe, 248 00:14:40.012 --> 00:14:45.130 an audiologist in Florida who started the first universal newborn hearing screening 249 00:14:45.150 --> 00:14:50.236 program in the early 1980s, ten years before 250 00:14:50.256 --> 00:14:56.609 NIH recognized the importance of universal newborn hearing screening. 251 00:14:56.629 --> 00:15:02.648 [unknown], who as a parent leader has influenced hundreds of lives. 252 00:15:02.668 --> 00:15:06.552 And I think one of my favorite things about this conference 253 00:15:06.572 --> 00:15:12.825 is how much integrated into all that we do is the parent voice. 254 00:15:12.845 --> 00:15:16.695 As we work with other groups, such as the heel stick screening group, 255 00:15:16.715 --> 00:15:17.429 They're amazed. 256 00:15:17.449 --> 00:15:20.466 The parents are so involved in that EHDI programs, and that's 257 00:15:20.486 --> 00:15:26.772 what makes it vibrant and successful and enables us to stay grounded. 258 00:15:26.792 --> 00:15:31.043 Sheri Farinha, a deaf leader and advocate 259 00:15:31.063 --> 00:15:33.612 who helped us understand 260 00:15:33.632 --> 00:15:38.651 the importance of lived experience and we should never forget that. 261 00:15:38.671 --> 00:15:41.921 But we should also always remember that lived experience is different 262 00:15:41.941 --> 00:15:43.289 for everybody, 263 00:15:43.309 --> 00:15:46.292 and the lived experience you have, regardless of what 264 00:15:46.312 --> 00:15:50.029 your situation and circumstances are, is just as important 265 00:15:50.049 --> 00:15:53.899 as the lived experience as the person you're sitting next to. 266 00:15:53.919 --> 00:15:55.234 So there are, 267 00:15:55.254 --> 00:16:00.973 like I say, about 65 other people listed out there. 268 00:16:00.993 --> 00:16:05.511 We're sure that we've forgotten a lot of very important people. 269 00:16:05.531 --> 00:16:09.581 And so we've set up a table out there where there are blank 270 00:16:09.601 --> 00:16:12.818 sheets of paper labeled EHDI Hall of Fame 271 00:16:12.838 --> 00:16:15.854 coordinators and EHDI heroes. 272 00:16:15.874 --> 00:16:19.425 We hope you'll, during the break, go out and write down 273 00:16:19.445 --> 00:16:23.529 the name of the person you think we should have included, 274 00:16:23.549 --> 00:16:26.298 and we'll get in touch with all of those people. 275 00:16:26.318 --> 00:16:27.466 And we won’t 276 00:16:27.486 --> 00:16:32.104 make a poster for them right now, but we'll find 277 00:16:32.124 --> 00:16:34.406 you were also recognized 278 00:16:34.426 --> 00:16:38.711 as someone who has made a difference in the lives of children. 279 00:16:38.731 --> 00:16:42.715 So there are blank sheets now with the question mark on them. 280 00:16:42.735 --> 00:16:45.784 Please take time to do it. 281 00:16:45.804 --> 00:16:50.422 I'd like to talk for just a minute about what some of the Giants that 282 00:16:50.442 --> 00:16:54.560 we really can agree on, have said to us 283 00:16:54.580 --> 00:16:58.564 about where we've come from and where we should go 284 00:16:58.584 --> 00:17:00.933 first one: 285 00:17:00.953 --> 00:17:05.404 Of course, language develops so rapidly in the first months of life, the longer a child’s 286 00:17:05.424 --> 00:17:10.442 hearing loss goes undiscovered, the worse the outcome is likely to be. 287 00:17:10.462 --> 00:17:14.747 So this C. Everett Koop who was Surgeon General of the United States 288 00:17:14.767 --> 00:17:18.917 in the late 1980s, early 1990s. 289 00:17:18.937 --> 00:17:24.390 It was Doctor Koop who agreed to include newborn hearing screening 290 00:17:24.410 --> 00:17:29.495 into the Healthy People 2000 goal which was a landmark effort 291 00:17:29.515 --> 00:17:32.231 to improve the health of this country. 292 00:17:32.251 --> 00:17:33.399 Dr. Koop did that because 293 00:17:33.419 --> 00:17:38.537 a bunch of ordinary people like you and me contacted him and said, 294 00:17:38.557 --> 00:17:42.808 wow, this is something we should be paying more attention to. 295 00:17:42.828 --> 00:17:47.279 And he not only included it in Healthy People 2000, 296 00:17:47.299 --> 00:17:51.984 but he also was instrumental in the NIH 297 00:17:52.004 --> 00:17:57.823 consensus development conference that I think led to, 298 00:17:57.843 --> 00:18:01.593 newborn hearing screening becoming the standard of care. 299 00:18:01.613 --> 00:18:04.063 The second, hero is Marion Downes. 300 00:18:04.083 --> 00:18:09.234 We often talk about Marion as the mother of newborn hearing screening. 301 00:18:09.254 --> 00:18:12.838 We can't give enough credit to Marion for her 302 00:18:12.858 --> 00:18:15.507 decades of work. 303 00:18:15.527 --> 00:18:19.111 Speaking at this conference 20 years ago 304 00:18:19.131 --> 00:18:24.183 she had this to say: You remember that screening is nothing 305 00:18:24.203 --> 00:18:28.687 without the follow up and intervention program. 306 00:18:28.707 --> 00:18:31.623 One challenge comes after the other. 307 00:18:31.643 --> 00:18:35.794 I sure like to think of this 40 year period, 308 00:18:35.814 --> 00:18:38.931 when we were trying to get newborn screening 309 00:18:38.951 --> 00:18:42.568 and I like to think of it as similar 310 00:18:42.588 --> 00:18:46.405 to a Mahatma Gandhi’s work in India. 311 00:18:46.425 --> 00:18:51.543 And I want to read what he said, and I think it's pertinent to all of us. 312 00:18:51.563 --> 00:18:56.582 First, they ignored me, then they laughed at me. 313 00:18:56.602 --> 00:18:58.717 Then they fought me. 314 00:18:58.737 --> 00:19:02.054 And then we won. 315 00:19:02.074 --> 00:19:05.190 So we still have a lot of battles to win, 316 00:19:05.210 --> 00:19:07.693 but people like Marion 317 00:19:07.713 --> 00:19:12.531 and all of you are essential in winning those battles. 318 00:19:12.551 --> 00:19:17.769 Some of the things we're advocating for, people think are foolish, but they aren’t. 319 00:19:17.789 --> 00:19:20.839 And we need to keep pursuing them. 320 00:19:20.859 --> 00:19:23.041 The hero of mine is David Kemp, 321 00:19:23.061 --> 00:19:25.744 a British auditory physicist 322 00:19:25.764 --> 00:19:28.113 who had this to say about his discovery 323 00:19:28.133 --> 00:19:31.617 of Otoacoustic emissions: I got the first Otoacoustic Emission 324 00:19:31.637 --> 00:19:33.852 medical machine to show you here. 325 00:19:33.872 --> 00:19:36.088 this was made in 1977 326 00:19:36.108 --> 00:19:41.026 to demonstrate the clinical application 327 00:19:41.046 --> 00:19:44.563 for screening and, 328 00:19:44.583 --> 00:19:46.798 this is a little acoustic emissions probe. 329 00:19:46.818 --> 00:19:50.502 And it was effective. We could, demonstrate acoustic emissions in 330 00:19:50.522 --> 00:19:54.139 healthy ears and absent from impaired ears. 331 00:19:54.159 --> 00:19:56.608 And we imagined that people recognize the value 332 00:19:56.628 --> 00:19:59.912 of this instrument straightaway, but in fact it’s taken quite a long time as you know. 333 00:19:59.932 --> 00:20:01.346 Yes, 334 00:20:01.366 --> 00:20:02.681 The cochlear sounder. The cochlear sounder. That’s right. 335 00:20:02.701 --> 00:20:04.983 336 00:20:05.003 --> 00:20:06.552 So we imagined that people 337 00:20:06.572 --> 00:20:09.555 would recognize the value of this right away. 338 00:20:09.575 --> 00:20:13.425 But in fact it took many years after that for that to happen. 339 00:20:13.445 --> 00:20:16.428 So we shouldn't give up with our good ideas. 340 00:20:16.448 --> 00:20:20.232 And there's a lot of things out there percolating. 341 00:20:20.252 --> 00:20:23.368 The fourth one is Thomas Behrens, 342 00:20:23.388 --> 00:20:30.242 who, was one of the early supporters as a federal staff member 343 00:20:30.262 --> 00:20:34.913 of newborn hearing screening. It was his division that funded the Rhode Island project. 344 00:20:34.933 --> 00:20:39.284 It was also he who worked with C. Everett Koop 345 00:20:39.304 --> 00:20:45.557 and with others to provide more high profile exposure for newborn hearing screening. 346 00:20:45.577 --> 00:20:47.593 Tom attended that same conference, 347 00:20:47.613 --> 00:20:51.163 that Mary was at and had this to say. 348 00:20:51.183 --> 00:20:53.565 I'm so glad that all these things are happening, 349 00:20:53.585 --> 00:20:58.103 but I would like to recognize among many, many people, 350 00:20:58.123 --> 00:21:01.473 two people who were very instrumental 351 00:21:01.493 --> 00:21:03.709 and that’s Dr. Merle McPherson 352 00:21:03.729 --> 00:21:08.847 and Dr. Betty Vohr. And the whole Rhode Island group. 353 00:21:08.867 --> 00:21:12.050 They had the guts to come with this crazy idea Karl and I had 354 00:21:12.070 --> 00:21:15.487 to start the Rhode Island program. 355 00:21:15.507 --> 00:21:21.426 If they wouldn’t have had the guts to step up and do something where 356 00:21:21.446 --> 00:21:24.663 I would say, everybody was against us 357 00:21:24.683 --> 00:21:27.232 and thought we were crazy. 358 00:21:27.252 --> 00:21:32.037 But with their effort and continuous 359 00:21:32.057 --> 00:21:34.273 attendance to that task, 360 00:21:34.293 --> 00:21:36.441 That's what's happening now. 361 00:21:36.461 --> 00:21:38.010 And as Marion Downs said 362 00:21:38.030 --> 00:21:43.448 There are many, many more things to be done, and I hope 363 00:21:43.468 --> 00:21:46.118 you are going ahead with that 364 00:21:46.138 --> 00:21:51.189 because Marion and I are going to retire slowly. 365 00:21:51.209 --> 00:21:55.961 So Tom had the unique ability to work behind the scenes. 366 00:21:55.981 --> 00:21:58.897 Most of you never heard of him, but in my opinion, 367 00:21:58.917 --> 00:22:02.267 he's probably the godfather of newborn hearing screening. 368 00:22:02.287 --> 00:22:05.604 He was the one that was always shifting credit to others, 369 00:22:05.624 --> 00:22:09.641 was never looking for the limelight, but because of what he did. 370 00:22:09.661 --> 00:22:12.744 We have newborn screening today. 371 00:22:12.764 --> 00:22:13.812 A fifth giant 372 00:22:13.832 --> 00:22:16.415 in my mind is Lewis Cooper, 373 00:22:16.435 --> 00:22:20.352 president of the American Academy of Pediatrics, 374 00:22:20.372 --> 00:22:25.490 who really brought the AAP on board back in the early 2000s. 375 00:22:25.510 --> 00:22:27.793 He was the father of a deaf daughter. 376 00:22:27.813 --> 00:22:32.464 His wife was the deaf blind coordinator in New York. 377 00:22:32.484 --> 00:22:36.435 He was on the team and was a significant participant 378 00:22:36.455 --> 00:22:39.671 in the development of the measles vaccine 379 00:22:39.691 --> 00:22:43.475 that has saved hundreds of millions of lives 380 00:22:43.495 --> 00:22:47.546 over the past few years, and has presented 381 00:22:47.566 --> 00:22:52.250 thousands and thousands of children who are deaf and hard of hearing. 382 00:22:52.270 --> 00:22:55.253 So we have lots of giants 383 00:22:55.273 --> 00:22:57.889 on the shoulders of staff, 384 00:22:57.909 --> 00:23:01.293 but there's lots of other work that needs to be done. 385 00:23:01.313 --> 00:23:05.630 And Archimedes, a famous scientist, 386 00:23:05.650 --> 00:23:07.399 in the Greek era, 387 00:23:07.419 --> 00:23:11.803 said, give me a lever long enough and a place to stand, 388 00:23:11.823 --> 00:23:14.072 and I will move the world. 389 00:23:14.092 --> 00:23:17.409 We, as EHDI workers, are involved in moving the world. 390 00:23:17.429 --> 00:23:22.314 And to do that, we need levers, and we need a place to stand. 391 00:23:22.334 --> 00:23:28.754 The levers we have are the scientific advances that continue to be made every year. 392 00:23:28.774 --> 00:23:31.556 Funding is an important lever. 393 00:23:31.576 --> 00:23:34.693 People who have taught us and supported us, such as the people 394 00:23:34.713 --> 00:23:40.298 whose posters are up and down these halls, but also like our coworkers next to us. 395 00:23:40.318 --> 00:23:44.603 I'll be forever grateful to Antonia Maxon and Brandt Culpepper 396 00:23:44.623 --> 00:23:48.940 who helped me learn what audiology was. I didn’t really become an audiologist, 397 00:23:48.960 --> 00:23:50.876 but I knew a lot more about it 398 00:23:50.896 --> 00:23:53.812 than I would have known had it not been for those people. 399 00:23:53.832 --> 00:23:56.515 So I encourage you to share your knowledge 400 00:23:56.535 --> 00:23:59.017 and your experiences with your coworkers, 401 00:23:59.037 --> 00:24:03.622 and those are the levers that will enable us to continue to move forward. 402 00:24:03.642 --> 00:24:06.091 Now, as for the place to stand, 403 00:24:06.111 --> 00:24:10.162 we've all been plopped down in the middle of children and families 404 00:24:10.182 --> 00:24:15.934 with great needs and great potential, sometimes great frustration. 405 00:24:15.954 --> 00:24:19.838 But each of us has a place to stand, 406 00:24:19.858 --> 00:24:24.409 and from that place we push and pull and we tug. 407 00:24:24.429 --> 00:24:28.313 It hasn't worked perfectly, but as Archimedes 408 00:24:28.333 --> 00:24:31.817 said, the world has moved forward. 409 00:24:31.837 --> 00:24:34.753 Let me remind you of some of the honest workers 410 00:24:34.773 --> 00:24:39.191 who made this possible. 411 00:24:39.211 --> 00:24:42.894 The first one is Dr. Betty Vohr. 412 00:24:42.914 --> 00:24:46.631 I do a lot of things in school 413 00:24:46.651 --> 00:24:52.621 [voices overlapping] 414 00:24:52.641 --> 00:24:55.407 415 00:24:55.427 --> 00:25:00.111 That was confusing. 416 00:25:00.131 --> 00:25:02.380 Let me start that one again. 417 00:25:02.400 --> 00:25:04.649 The person I want to talk about is Jim Walsh. 418 00:25:04.669 --> 00:25:08.620 He was a Republican senator from Syracuse, 419 00:25:08.640 --> 00:25:12.791 an audiologist named Beth [unknown] invited him to come visit her newborn 420 00:25:12.811 --> 00:25:18.363 hearing screening program in about 1995, and she didn't think he’d come. 421 00:25:18.383 --> 00:25:20.365 He probably wonders why he did go, 422 00:25:20.385 --> 00:25:24.002 but he got there and he got excited about newborn hearing screening. 423 00:25:24.022 --> 00:25:28.740 He happened to be the head of an appropriations committee and Congress, 424 00:25:28.760 --> 00:25:31.510 and it was he who arranged 425 00:25:31.530 --> 00:25:36.781 for the funding that HRSA and CDC have had for the last 20 years 426 00:25:36.801 --> 00:25:39.651 to enable people to do newborn hearing screening. 427 00:25:39.671 --> 00:25:42.254 And that all happened because a single audiologist 428 00:25:42.274 --> 00:25:46.258 had an hairbrained idea and invited him to come visit. 429 00:25:46.278 --> 00:25:50.562 This is what he said some years later. 430 00:25:50.582 --> 00:25:52.264 I do lots of things in this job. 431 00:25:52.284 --> 00:25:55.500 I've been able to get to be successful in a lot of different ways, 432 00:25:55.520 --> 00:25:59.271 but I think this is probably the thing that I care the most about. 433 00:25:59.291 --> 00:26:02.307 I can feel the best about when all is said and done. 434 00:26:02.327 --> 00:26:04.175 This legislation. 435 00:26:04.195 --> 00:26:09.014 That's quite a statement from someone who was in Congress for over 25 years, 436 00:26:09.034 --> 00:26:12.017 said, this is the thing I feel best about, 437 00:26:12.037 --> 00:26:14.886 and it's the thing we ought to feel best about. 438 00:26:14.906 --> 00:26:19.658 What a wonderful opportunity we've had, to bless the lives of children and families. 439 00:26:19.678 --> 00:26:22.093 But there's still more to do. 440 00:26:22.113 --> 00:26:24.496 Okay, another person: 441 00:26:24.516 --> 00:26:27.632 here in needs to be seen within the context 442 00:26:27.652 --> 00:26:33.104 of a much bigger picture, that which is referred to as the 2010 agenda. 443 00:26:33.124 --> 00:26:34.973 The fourth activity 444 00:26:34.993 --> 00:26:38.877 Is related to early and continuous screening. If you have 445 00:26:38.897 --> 00:26:42.213 every child in health care, you've got good insurance. 446 00:26:42.233 --> 00:26:46.751 If you're working with families then you can 447 00:26:46.771 --> 00:26:47.385 do early and 448 00:26:47.405 --> 00:26:50.755 continuous assessments, make sure you're picking up children 449 00:26:50.775 --> 00:26:54.025 very early in getting the treatments they need. 450 00:26:54.045 --> 00:26:55.126 So Merle McPherson 451 00:26:55.146 --> 00:26:58.930 was the head of the Division of Children and Special Health Care Needs 452 00:26:58.950 --> 00:27:02.233 after the Rhode Island project was funded and completed. 453 00:27:02.253 --> 00:27:05.704 It was Merle who stepped up and said, we need to continue. 454 00:27:05.724 --> 00:27:08.106 We need to bring together a consortium. 455 00:27:08.126 --> 00:27:11.242 We're doing this. and 456 00:27:11.262 --> 00:27:14.112 they need to move this forward even more dramatically 457 00:27:14.132 --> 00:27:17.949 that it has been. Merle recognized that we needed a system. 458 00:27:17.969 --> 00:27:20.619 We didn't just need newborn hearing screening. 459 00:27:20.639 --> 00:27:23.788 We needed to connect that with diagnostics and early intervention 460 00:27:23.808 --> 00:27:27.459 and family support and health care financing. 461 00:27:27.479 --> 00:27:31.329 It's people like Merle who again, most people have never heard of. 462 00:27:31.349 --> 00:27:34.666 And she took this to the next level. 463 00:27:34.686 --> 00:27:36.167 And then there's Betty Vohr, 464 00:27:36.187 --> 00:27:40.572 who along with me was PI in the Rhode Island Project. 465 00:27:40.592 --> 00:27:44.576 Betty said something very important, and I hope you all remember. 466 00:27:44.596 --> 00:27:46.811 I have learned so much along the way. 467 00:27:46.831 --> 00:27:50.582 I have learned from colleagues working with audiologists, 468 00:27:50.602 --> 00:27:52.083 speech language therapists. 469 00:27:52.103 --> 00:27:56.154 Early interventionists. Probably most important are parents. 470 00:27:56.174 --> 00:28:00.625 I learned a great deal from them about being sensitive to the issues 471 00:28:00.645 --> 00:28:04.696 and having a child who is deaf and hard of hearing, or being a parent 472 00:28:04.716 --> 00:28:07.699 who is deaf or hard of hearing. 473 00:28:07.719 --> 00:28:10.602 So here's a world renowned neonatologist 474 00:28:10.622 --> 00:28:14.072 saying that most important, are parents. 475 00:28:14.092 --> 00:28:18.610 That's something that I think the EHDI system has embraced 476 00:28:18.630 --> 00:28:22.080 very successfully, and I hope we will never lose it. 477 00:28:22.100 --> 00:28:26.384 And these two people at the bottom, John Eichenwald and Irene Forsman 478 00:28:26.404 --> 00:28:29.554 were federal officials who took the money 479 00:28:29.574 --> 00:28:33.758 that Jim Walsh got allocated for newborn hearing screening programs 480 00:28:33.778 --> 00:28:36.461 and over decades were able to allocate 481 00:28:36.481 --> 00:28:39.431 that money in state systems to parent groups 482 00:28:39.451 --> 00:28:44.002 and were able to leverage the federal support 483 00:28:44.022 --> 00:28:50.075 in ways that could improve state-based EHDI programs. 484 00:28:50.095 --> 00:28:50.608 Now, having 485 00:28:50.628 --> 00:28:54.779 talked about some of the heroes for a moment, let me change my focus 486 00:28:54.799 --> 00:28:59.684 to where we need to be going and what we need to do. 487 00:28:59.704 --> 00:29:03.354 This is a pie chart showing how many children are reported 488 00:29:03.374 --> 00:29:08.293 to the CDC, as being deaf or hard of hearing. 489 00:29:08.313 --> 00:29:11.563 You'll notice that it's a very heterogeneous group. 490 00:29:11.583 --> 00:29:15.400 Almost 40% of them are children with unilateral hearing loss. 491 00:29:15.420 --> 00:29:19.370 But those are children just as important as those with bilateral profound hearing losses. 492 00:29:19.390 --> 00:29:23.508 The effects of not having hearing of any degree 493 00:29:23.528 --> 00:29:28.513 or severity is astounding, and we need to do a better job 494 00:29:28.533 --> 00:29:33.985 of making sure we include all children with hearing loss in our programs. 495 00:29:34.005 --> 00:29:37.055 I'd like to give you just two examples of the good things 496 00:29:37.075 --> 00:29:40.125 that happen when we do our work well. 497 00:29:40.145 --> 00:29:43.895 The first one is a short video of two little boys 498 00:29:43.915 --> 00:29:47.532 who were adopted into a family where the father is deaf. 499 00:29:47.552 --> 00:29:51.102 The language in that home is ASL. 500 00:29:51.122 --> 00:29:54.506 The mother is hearing but the language is ASL. 501 00:29:54.526 --> 00:29:58.143 These little boys were adopted from China when they were about a year old. 502 00:29:58.163 --> 00:30:02.380 In this video, they're about 18 months old when they came from China. 503 00:30:02.400 --> 00:30:05.517 They had no language, 504 00:30:05.537 --> 00:30:11.507 no way of communicating at all. Watch what happens. 505 00:30:11.527 --> 00:30:12.524 506 00:30:12.544 --> 00:30:16.127 There's no voice. 507 00:30:16.147 --> 00:30:22.117 He says: 508 00:30:22.137 --> 00:31:18.790 509 00:31:18.810 --> 00:31:22.193 Okay now, those two little boys have incredible language. 510 00:31:22.213 --> 00:31:25.930 After only six months being immersed in a home. 511 00:31:25.950 --> 00:31:27.465 that provided frequent 512 00:31:27.485 --> 00:31:32.103 and competent language models in ASL. 513 00:31:32.123 --> 00:31:32.437 they are 514 00:31:32.457 --> 00:31:35.540 remembering things from the past and inserting into the future 515 00:31:35.560 --> 00:31:38.810 they are understanding and talking about the context. 516 00:31:38.830 --> 00:31:41.779 They can start and stop conversation. 517 00:31:41.799 --> 00:31:45.250 This is what happens when we identify children early and give them 518 00:31:45.270 --> 00:31:47.118 Good language models. 519 00:31:47.138 --> 00:31:49.787 I want to play another clip of two little boys 520 00:31:49.807 --> 00:31:53.191 who took a different route but equally important. 521 00:31:53.211 --> 00:31:58.763 They were born with bilateral profound hearing loss, had hearing aids 522 00:31:58.783 --> 00:32:04.302 for a few months, but they had no hearing so the hearing aids didn’t amplify anything. 523 00:32:04.322 --> 00:32:06.638 And then they got cochlear implants. 524 00:32:06.658 --> 00:32:10.375 This is a video one of their mothers made 525 00:32:10.395 --> 00:32:14.479 on the first day, that she sent them off to their neighborhood 526 00:32:14.499 --> 00:32:20.469 kindergarten program. 527 00:32:20.489 --> 00:33:39.130 528 00:33:39.150 --> 00:33:41.399 So I don't know why it's taking you 529 00:33:41.419 --> 00:33:46.671 so long to get this done. 530 00:33:46.691 --> 00:33:49.540 Because it’s just voila. 531 00:33:49.560 --> 00:33:52.443 What happened that enabled us to move 532 00:33:52.463 --> 00:33:55.646 from where we were 40 years ago to where we are today? 533 00:33:55.666 --> 00:33:57.482 Whether the children are using 534 00:33:57.502 --> 00:34:02.053 American Sign Language, spoken English, cued speech, or something else? 535 00:34:02.073 --> 00:34:06.124 what enabled us to do that is 536 00:34:06.144 --> 00:34:07.492 we've got early identification 537 00:34:07.512 --> 00:34:09.460 of hearing loss. 538 00:34:09.480 --> 00:34:14.832 You've got the availability of much better hearing technology. 539 00:34:14.852 --> 00:34:17.702 And we've also learned a lot about teaching language. 540 00:34:17.722 --> 00:34:21.506 We don't have to have technology to teach language. 541 00:34:21.526 --> 00:34:22.540 There are other methods to do that. 542 00:34:22.560 --> 00:34:27.512 And because of that, we've been able to make progress. 543 00:34:27.532 --> 00:34:32.650 Now, I remind you of the four things I suggested we frame this talk 544 00:34:32.670 --> 00:34:37.722 What’s past is prologue. What to come, in yours and my discharge 545 00:34:37.742 --> 00:34:39.524 You ain't seen nothing yet. 546 00:34:39.544 --> 00:34:42.727 And don't lose your perspective. 547 00:34:42.747 --> 00:34:45.196 I want to show you another clip. 548 00:34:45.216 --> 00:34:46.931 It's a pretty grainy video. 549 00:34:46.951 --> 00:34:52.603 This is from a special that Walter Cronkite did in the early 1980s. 550 00:34:52.623 --> 00:34:57.208 And it shows how we were screening babies and how excited people were about 551 00:34:57.228 --> 00:34:59.210 This new prospect, 552 00:34:59.230 --> 00:35:00.111 the technology to 553 00:35:00.131 --> 00:35:03.614 identity hearing loss in infants exists. 554 00:35:03.634 --> 00:35:07.919 New electronic instrumentation is revolutionizing this work. 555 00:35:07.939 --> 00:35:11.022 In particular, the brainstem evoked response 556 00:35:11.042 --> 00:35:14.192 test called the BER. 557 00:35:14.212 --> 00:35:18.463 A BER such as this one at Albert Einstein Medical Center in New York, 558 00:35:18.483 --> 00:35:23.501 can be conducted even while the infant is sound asleep. 559 00:35:23.521 --> 00:35:24.535 A test sound, 560 00:35:24.555 --> 00:35:28.506 a series of clicks, is played over earphones. 561 00:35:28.526 --> 00:35:30.074 Minute electrical signals 562 00:35:30.094 --> 00:35:33.678 picked up from the scalp show whether audio information is reaching 563 00:35:33.698 --> 00:35:35.113 the brain. 564 00:35:35.133 --> 00:35:38.516 A computer sorts the signals, and if there is a problem, 565 00:35:38.536 --> 00:35:44.956 it tells the doctor where it is. 566 00:35:44.976 --> 00:35:45.590 Okay, 567 00:35:45.610 --> 00:35:49.894 that looks like a pretty involved procedure. 568 00:35:49.914 --> 00:35:52.997 Fortunately, we've made a lot of progress. 569 00:35:53.017 --> 00:35:57.101 But sometimes progress comes in little bitty steps, and we need to take 570 00:35:57.121 --> 00:36:01.172 the progress that we can get there and then build upon that. 571 00:36:01.192 --> 00:36:05.810 And that's where we are in many aspects of newborn screening and diagnosis 572 00:36:05.830 --> 00:36:08.779 and intervention in just a moment. 573 00:36:08.799 --> 00:36:11.682 But here's where we are today. 574 00:36:11.702 --> 00:36:12.850 In terms of screening. 575 00:36:12.870 --> 00:36:16.454 How often would babies hearing be checked? 576 00:36:16.474 --> 00:36:18.422 Thanks to advances in technology, 577 00:36:18.442 --> 00:36:22.560 we can now check on babies hearing shortly after birth. 578 00:36:22.580 --> 00:36:25.863 Your health care staff is concerned about your newborn's hearing, 579 00:36:25.883 --> 00:36:30.902 because one out of every 300 babies is born with a hearing loss. 580 00:36:30.922 --> 00:36:33.804 Children who cannot hear clearly will often have trouble 581 00:36:33.824 --> 00:36:35.339 learning to communicate. 582 00:36:35.359 --> 00:36:38.676 That's why it is important to check or screen each 583 00:36:38.696 --> 00:36:42.613 newborn’s hearing using one of two safe, simple, and painless 584 00:36:42.633 --> 00:36:44.048 procedures. 585 00:36:44.068 --> 00:36:46.884 Let's watch an example of each. 586 00:36:46.904 --> 00:36:49.287 One method is called OAE 587 00:36:49.307 --> 00:36:52.456 or otoacoustic emissions screening. 588 00:36:52.476 --> 00:36:56.194 In this process, a trained screener places a small earphone 589 00:36:56.214 --> 00:37:00.097 in the baby's ear that emits a series of soft sounds. 590 00:37:00.117 --> 00:37:05.036 The inner ear typically responds to these sounds by producing echoes called 591 00:37:05.056 --> 00:37:10.841 otoacoustic emissions, which are analyzed by the screening equipment. 592 00:37:10.861 --> 00:37:12.143 Another method is called 593 00:37:12.163 --> 00:37:15.179 AABR or automated auditory 594 00:37:15.199 --> 00:37:17.782 brainstem response screening. 595 00:37:17.802 --> 00:37:20.751 In this process, the trained screener places band-aid- 596 00:37:20.771 --> 00:37:23.754 like sensors on the baby's head. 597 00:37:23.774 --> 00:37:26.724 As soft sounds are played into the baby's ear, 598 00:37:26.744 --> 00:37:32.964 These sensors analyze the brain's response to the sound. 599 00:37:32.984 --> 00:37:34.665 No matter which method is used. 600 00:37:34.685 --> 00:37:40.655 In a few minutes, the screening is finished and the result is displayed. 601 00:37:40.675 --> 00:37:42.773 602 00:37:42.793 --> 00:37:45.910 Okay, so having reminded us where we've been 603 00:37:45.930 --> 00:37:48.913 so that we don't lose our perspective 604 00:37:48.933 --> 00:37:51.048 and thinking about the levers and 605 00:37:51.068 --> 00:37:54.085 places to stand that each of us have. 606 00:37:54.105 --> 00:37:57.021 I'd like to mention five areas of focus that I think 607 00:37:57.041 --> 00:38:01.325 we should be looking at during the next 5 to 10 years 608 00:38:01.345 --> 00:38:04.695 that really are in yours, and my discharge 609 00:38:04.715 --> 00:38:09.200 and fit into the category of “we ain’t seen nothin’ yet”. 610 00:38:09.220 --> 00:38:13.604 So first, as we started newborn hearing screening, 611 00:38:13.624 --> 00:38:18.075 we got involved more deeply than we probably should have, in trying 612 00:38:18.095 --> 00:38:22.580 to figure out when the screening, what equipment to use, 613 00:38:22.600 --> 00:38:24.849 How many times do we have to screen? 614 00:38:24.869 --> 00:38:25.349 And we thought 615 00:38:25.369 --> 00:38:29.220 it was all about the screening, and that was an important first step. 616 00:38:29.240 --> 00:38:33.591 But we kind of assumed that a miracle would occur when we got done screening, 617 00:38:33.611 --> 00:38:36.994 and everything would be successful. 618 00:38:37.014 --> 00:38:38.562 We soon realized that we needed 619 00:38:38.582 --> 00:38:41.732 a little more work after that step. 620 00:38:41.752 --> 00:38:45.803 and there was a lot to be done in terms of diagnosis, early intervention 621 00:38:45.823 --> 00:38:50.841 the medical home, data management, program evaluation, and family support. 622 00:38:50.861 --> 00:38:53.311 We've made incredible progress in some of those areas 623 00:38:53.331 --> 00:38:55.846 and very little progress in other areas. 624 00:38:55.866 --> 00:38:59.717 We still have a lot of work to do to create an EHDI system 625 00:38:59.737 --> 00:39:03.220 that is responsive to all children and all families, 626 00:39:03.240 --> 00:39:05.489 and we're the ones that need to be doing that. 627 00:39:05.509 --> 00:39:07.391 You and me. 628 00:39:07.411 --> 00:39:10.494 The second area is for children 629 00:39:10.514 --> 00:39:13.864 who are older than the newborn phase. 630 00:39:13.884 --> 00:39:18.602 So this data comes from the National Health Nutrition Examination Survey. 631 00:39:18.622 --> 00:39:22.673 It tells us that there are 7 to 10 children per thousand 632 00:39:22.693 --> 00:39:26.110 who are deaf or hard of hearing by the time they enter school. 633 00:39:26.130 --> 00:39:28.813 So that's 2 to 3 times as many children 634 00:39:28.833 --> 00:39:32.316 as we’re identifying in newborn hearing screening programs. 635 00:39:32.336 --> 00:39:36.120 Those children also need a great deal of help. 636 00:39:36.140 --> 00:39:39.023 We have some great resources on our kids area 637 00:39:39.043 --> 00:39:42.927 and on our website that can give guidance on how to do that. 638 00:39:42.947 --> 00:39:46.564 And there are a number of scientific studies that have been 639 00:39:46.584 --> 00:39:51.569 published showing that we can screen successfully in Head Start programs, 640 00:39:51.589 --> 00:39:55.539 in preschool programs, in federally qualified health centers. 641 00:39:55.559 --> 00:39:59.710 But we're not doing it yet. The person grants 642 00:39:59.730 --> 00:40:03.881 focused on that several years ago, but they didn't put any money into it. 643 00:40:03.901 --> 00:40:07.084 And so we've got to find the resources 644 00:40:07.104 --> 00:40:11.455 to get implementing these programs for 3-5 year old children. 645 00:40:11.475 --> 00:40:14.625 So that's the second area that 'd like you to think about. 646 00:40:14.645 --> 00:40:17.695 The third area is what we often refer to 647 00:40:17.715 --> 00:40:22.333 as tele-practice or tele-intervention or audiology. 648 00:40:22.353 --> 00:40:23.667 We're doing a lot more of that 649 00:40:23.687 --> 00:40:25.770 now than we were ten years ago. 650 00:40:25.790 --> 00:40:31.509 But it's not a routine practice and it is clearly within our reach. 651 00:40:31.529 --> 00:40:34.545 I want to play a short video of a little boy here 652 00:40:34.565 --> 00:40:38.749 who is in a teleintervention session with his mother. 653 00:40:38.769 --> 00:40:42.853 There's a graduate student and a faculty member up in the upper right hand corner. 654 00:40:42.873 --> 00:40:44.755 Watch what happens. 655 00:40:44.775 --> 00:40:47.691 Hi Alex! 656 00:40:47.711 --> 00:40:51.595 [Laughs] He’s looking up. 657 00:40:51.615 --> 00:40:53.864 So why don't you just present the sound and see, 658 00:40:53.884 --> 00:41:00.337 and then, we'll see if he's, you know, has any reaction, just to your voice. 659 00:41:00.357 --> 00:41:02.840 No toy? Yeah, just as usual. 660 00:41:02.860 --> 00:41:07.411 Present the sound first, and then we'll see if he looks and starts turning to you. 661 00:41:07.431 --> 00:41:09.647 Or anything like that. 662 00:41:09.667 --> 00:41:16.320 [Mom making sounds] 663 00:41:16.340 --> 00:41:19.123 Awesome. He looked right at you. 664 00:41:19.143 --> 00:41:23.794 [Mom making sounds] 665 00:41:23.814 --> 00:41:24.929 The toy? 666 00:41:24.949 --> 00:41:25.162 Yeah. 667 00:41:25.182 --> 00:41:31.152 So he looked up, so you can give him the reward. [Baby making sounds] (Mom) That’s right! 668 00:41:31.172 --> 00:41:37.208 669 00:41:37.228 --> 00:41:41.045 He shoots, he scores! 670 00:41:41.065 --> 00:41:43.080 What's the basic, 671 00:41:43.100 --> 00:41:47.852 is the really the first time I’ve seen that. That’s great! 672 00:41:47.872 --> 00:41:50.154 We've just begun to tap the surface with 673 00:41:50.174 --> 00:41:53.524 What can happen with two way video conferencing, 674 00:41:53.544 --> 00:41:57.628 whether it's intervention, diagnosis, or family support, 675 00:41:57.648 --> 00:42:00.831 there's more that we need to do, and it's within yours 676 00:42:00.851 --> 00:42:02.099 and my discharge. 677 00:42:02.119 --> 00:42:04.268 We need to move forward. 678 00:42:04.288 --> 00:42:08.472 The fourth area is Congenital Cytomegalovirus. 679 00:42:08.492 --> 00:42:12.376 That is much better known now than it was five years ago. 680 00:42:12.396 --> 00:42:16.280 Due to the work of mostly state EHDI coordinators. It started in Utah, 681 00:42:16.300 --> 00:42:20.918 and moved onto New York, Minneapolis, and other places. 682 00:42:20.938 --> 00:42:26.290 Cytomegalovirus is one of the most common viruses that affects humans. 683 00:42:26.310 --> 00:42:31.795 If you are not pregnant at the time, it has very little effect. 684 00:42:31.815 --> 00:42:34.465 It would be a very mild cold, 685 00:42:34.485 --> 00:42:39.303 but if you pregnant, about 20% of those babies will be born with congenital 686 00:42:39.323 --> 00:42:44.742 cytomegalovirus, and about 20% of those babies will have serious, 687 00:42:44.762 --> 00:42:47.645 morbidities. 688 00:42:47.665 --> 00:42:50.648 of 20,000 babies born each year with congenital 689 00:42:50.668 --> 00:42:53.684 cytomegalovirus, 400 will die. 690 00:42:53.704 --> 00:42:56.420 3,600 will be deaf or hard of hearing. 691 00:42:56.440 --> 00:42:58.989 And there are other conditions as well. 692 00:42:59.009 --> 00:43:01.325 So many states 693 00:43:01.345 --> 00:43:04.495 are now implementing what they call targeted screening of 694 00:43:04.515 --> 00:43:08.465 Cytomegalovirus, where they screen those babies that failed their newborn 695 00:43:08.485 --> 00:43:12.636 hearing screening test. The incidence of Cytomegalovirus 696 00:43:12.656 --> 00:43:17.074 among that group is about four times what it is in the general population. 697 00:43:17.094 --> 00:43:20.444 But there are still about half the children, 698 00:43:20.464 --> 00:43:24.381 who have congenital cytomegalovirus who will pass. 699 00:43:24.401 --> 00:43:26.951 A newborn hearing screening test. 700 00:43:26.971 --> 00:43:30.220 Utah has done some wonderful work in this area. 701 00:43:30.240 --> 00:43:31.922 This is one of my favorite graphs. 702 00:43:31.942 --> 00:43:35.893 When they started testing for Cytomegalovirus that has to be done 703 00:43:35.913 --> 00:43:41.031 within the first 21 days of life, whether it's congenital or aquired. 704 00:43:41.051 --> 00:43:46.704 They saw that diagnostic rates for all children go way up. 705 00:43:46.724 --> 00:43:50.874 So that means by about 30%, the children who were getting 706 00:43:50.894 --> 00:43:54.144 a diagnostic assessment for three months of age, 707 00:43:54.164 --> 00:43:59.383 because they were so focused on finding those babies with cytomegalovirus. 708 00:43:59.403 --> 00:44:02.519 A fifth area I wanted to point to as an area 709 00:44:02.539 --> 00:44:06.256 where we need more work, but great things are happening. 710 00:44:06.276 --> 00:44:09.760 I think the next big step in newborn hearing screening 711 00:44:09.780 --> 00:44:14.031 will be the fusion of doing physiological screenings, 712 00:44:14.051 --> 00:44:17.468 which we're doing now with otoacoustic emissions 713 00:44:17.488 --> 00:44:21.372 And ABR and combining that with screening for congenital 714 00:44:21.392 --> 00:44:26.910 cytomegalovirus for all babies, probably using a saliva test. 715 00:44:26.930 --> 00:44:29.713 And then doing bedside genetic screening. 716 00:44:29.733 --> 00:44:33.050 At least for targeted genetic 717 00:44:33.070 --> 00:44:34.551 mutations. 718 00:44:34.571 --> 00:44:37.821 There are places around the world that are doing that much better than what 719 00:44:37.841 --> 00:44:41.492 we're doing. These are two studies from China 720 00:44:41.512 --> 00:44:46.063 including in one case, about 240,000 babies that were screened. 721 00:44:46.083 --> 00:44:49.266 Both with physiological screenings and genetic screenings. 722 00:44:49.286 --> 00:44:52.369 And another case, 1.2 million children. 723 00:44:52.389 --> 00:44:55.272 They found that not only did they identify 724 00:44:55.292 --> 00:45:00.577 more babies with hearing loss, but they also were able to identify babies 725 00:45:00.597 --> 00:45:01.145 who had genetic 726 00:45:01.165 --> 00:45:05.115 mutations that would cause other, morbidities. 727 00:45:05.135 --> 00:45:07.885 And so there is a lot of work being done. 728 00:45:07.905 --> 00:45:12.222 We need to catch up with that work. 729 00:45:12.242 --> 00:45:13.724 For appears as well. 730 00:45:13.744 --> 00:45:17.061 There was a report at the European Union 731 00:45:17.081 --> 00:45:19.263 Conference on Genetics, where 732 00:45:19.283 --> 00:45:23.767 five children in China were treated with, 733 00:45:23.787 --> 00:45:28.472 an injection that contained a neutral virus 734 00:45:28.492 --> 00:45:31.442 and included the correct DNA sequence 735 00:45:31.462 --> 00:45:35.079 for the Otoferlin mutation. 736 00:45:35.099 --> 00:45:37.448 And within a few months, 737 00:45:37.468 --> 00:45:40.884 other people around the world were reporting it well. 738 00:45:40.904 --> 00:45:43.787 And was being publicized not only in scientific journals 739 00:45:43.807 --> 00:45:47.391 but in the popular press. 740 00:45:47.411 --> 00:45:50.494 An article in The Lancet came out 741 00:45:50.514 --> 00:45:55.699 in January of 2024 showing that not only the babies 742 00:45:55.719 --> 00:46:01.538 from China. There were babies from France and the United States and 743 00:46:01.558 --> 00:46:03.073 that were successfully treated. 744 00:46:03.093 --> 00:46:07.010 But we don't know where those gene therapies are going to go yet. 745 00:46:07.030 --> 00:46:09.613 We don't know whether it will have long lasting effects. 746 00:46:09.633 --> 00:46:11.982 We don't know whether there will be side effects. 747 00:46:12.002 --> 00:46:16.253 We don't know whether it's possible to do the same sort of gene therapy 748 00:46:16.273 --> 00:46:19.323 with other genetic mutations. 749 00:46:19.343 --> 00:46:23.994 There are about 250 different genetic mutations that cause hearing loss. 750 00:46:24.014 --> 00:46:28.599 But about ten of those account for 90% of all hearing loss. 751 00:46:28.619 --> 00:46:31.602 If we can successfully use gene therapy 752 00:46:31.622 --> 00:46:37.207 to treat other genes, such as GJB2 or usher syndrome, 753 00:46:37.227 --> 00:46:42.579 [unknown] it will be a game changer for what happens to children 754 00:46:42.599 --> 00:46:46.884 who are born withthose genetic mutations. 755 00:46:46.904 --> 00:46:50.287 And an article that came out in April of 2024 756 00:46:50.307 --> 00:46:53.390 for the editor of Molecular Therapy said 757 00:46:53.410 --> 00:46:56.393 the data is compelling and astonishing 758 00:46:56.413 --> 00:47:00.998 and indelibly celebrated the way this gene therapy can change lives. 759 00:47:01.018 --> 00:47:04.034 As I said, there's a lot that has to be done still. 760 00:47:04.054 --> 00:47:09.173 So those are just five variants, that I think deserve our attention and our continued effort 761 00:47:09.193 --> 00:47:14.645 and the input from honest workers in the field, like all of you. 762 00:47:14.665 --> 00:47:16.480 So I remind you 763 00:47:16.500 --> 00:47:20.651 again of the four things we started with. 764 00:47:20.671 --> 00:47:23.587 And my invitation to you 765 00:47:23.607 --> 00:47:28.358 is to think about the areas where we need to make improvement 766 00:47:28.378 --> 00:47:31.228 and then move forward in your own way 767 00:47:31.248 --> 00:47:34.598 from your place to stand. 768 00:47:34.618 --> 00:47:39.336 And the levers that you have to move the world. 769 00:47:39.356 --> 00:47:41.471 This is our 25th anniversary. 770 00:47:41.491 --> 00:47:46.910 There's a balloon arch that we invite you to take pictures. 771 00:47:46.930 --> 00:47:49.813 And here's a harebrained idea 772 00:47:49.833 --> 00:47:50.380 Gather your EHDI team. 773 00:47:50.400 --> 00:47:55.586 Take a picture and then write to your congressmen 774 00:47:55.606 --> 00:48:00.490 and your state representatives and say, we just attended this EHDI conference. 775 00:48:00.510 --> 00:48:03.493 And what's happening with children and families as a result of EHDI 776 00:48:03.513 --> 00:48:06.463 is absolutely astonishing. 777 00:48:06.483 --> 00:48:12.269 And you, as my legislator in the United States, 778 00:48:12.289 --> 00:48:16.006 Congress or Senate or in my state legislature, 779 00:48:16.026 --> 00:48:18.475 this is, this is an opportunity for you 780 00:48:18.495 --> 00:48:22.212 to do something incredible and change people's lives. 781 00:48:22.232 --> 00:48:22.579 Okay. 782 00:48:22.599 --> 00:48:28.118 One final example from my horseback riding life. 783 00:48:28.138 --> 00:48:28.986 This is my son, Brigham. 784 00:48:29.006 --> 00:48:31.488 When he was 10 years old. 785 00:48:31.508 --> 00:48:35.259 Any of you who know about jumping horses, 786 00:48:35.279 --> 00:48:38.495 you know, that one of the secrets to being successful 787 00:48:38.515 --> 00:48:43.433 and you have to look over the rail, 788 00:48:43.453 --> 00:48:45.669 not down at the rail. 789 00:48:45.689 --> 00:48:49.172 If you look down at the rail, the horse senses that, 790 00:48:49.192 --> 00:48:52.376 and disastrous things happen. 791 00:48:52.396 --> 00:48:57.281 You go off the horse and end up in the dirt. 792 00:48:57.301 --> 00:49:02.119 So an important part of this lesson is that you get back on the horse. 793 00:49:02.139 --> 00:49:04.688 And here's what happened when he got on the horse 794 00:49:04.708 --> 00:49:10.127 and looked over there right off down the road and said, what is possible? 795 00:49:10.147 --> 00:49:13.931 What can we do that will be successful? 796 00:49:13.951 --> 00:49:17.801 “The world has moved along not only by the mighty shoves of its heroes, 797 00:49:17.821 --> 00:49:22.139 but also by the aggregate of tiny pushes of each honest worker. 798 00:49:22.159 --> 00:49:26.009 I hope each of you will leave this session today and think about 799 00:49:26.029 --> 00:49:30.380 what can I do to move the ball down the road? 800 00:49:30.400 --> 00:49:33.550 What can I do to make EHDI a more comprehensive, 801 00:49:33.570 --> 00:49:38.388 successful program and to bless the lives of even more people? 802 00:49:38.408 --> 00:49:39.356 Thank you for being people who 803 00:49:39.376 --> 00:49:44.561 recognize that everyone here is doing it together. 804 00:49:44.581 --> 00:49:47.197 We have lots of second chances, 805 00:49:47.217 --> 00:49:51.335 as my son did after he fell off that horse to get back on. 806 00:49:51.355 --> 00:49:52.302 And to continue 807 00:49:52.322 --> 00:49:56.473 with the wonderful work of EHDI forward during the next 25 years. 808 00:49:56.493 --> 00:50:06.998 Thank you.