WEBVTT 1 00:00:00.000 --> 00:00:01.980 WILLIAM EISERMAN: 2 00:00:02.000 --> 00:00:02.980 Good day, everyone. 3 00:00:03.000 --> 00:00:04.980 I would like to welcome you 4 00:00:05.000 --> 00:00:06.980 to today's webinar entitled 5 00:00:07.000 --> 00:00:08.980 The Shift to Equality and Equity Through Direct 6 00:00:09.000 --> 00:00:12.980 Referrals to Parent-to-Parent Support. 7 00:00:13.000 --> 00:00:14.980 My name is Will Eiserman, 8 00:00:15.000 --> 00:00:16.980 and I am happy 9 00:00:17.000 --> 00:00:17.980 to be facilitating 10 00:00:18.000 --> 00:00:19.980 today's webinar. 11 00:00:20.000 --> 00:00:21.980 I am the Associate Director 12 00:00:22.000 --> 00:00:27.970 of the 13 00:00:27.990 --> 00:00:28.980 14 00:00:29.000 --> 00:00:30.980 national assessment for hearing and assessment 15 00:00:31.000 --> 00:00:32.980 management. Known as NCHAM. 16 00:00:33.000 --> 00:00:34.980 Which also serves as the EHDI 17 00:00:35.000 --> 00:00:35.980 National Technical Resource Center 18 00:00:36.000 --> 00:00:37.980 based at Utah State University. 19 00:00:38.000 --> 00:00:39.980 Today's webinar 20 00:00:40.000 --> 00:00:41.980 is being offered 21 00:00:42.000 --> 00:00:43.980 by the EHDI 22 00:00:44.000 --> 00:00:47.980 NTRC, 23 00:00:48.000 --> 00:00:49.980 and will be recorded. Which means if anything 24 00:00:50.000 --> 00:00:52.980 disrupts your full attention or participation 25 00:00:53.000 --> 00:00:54.980 in today's webinar, 26 00:00:55.000 --> 00:00:58.980 you will be able to access it again on our website 27 00:00:59.000 --> 00:01:00.980 . Which is, 28 00:01:01.000 --> 00:01:03.980 infanthearing.org 29 00:01:04.000 --> 00:01:09.980 in the next couple of days. 30 00:01:10.000 --> 00:01:13.980 Keep that in mind if there are any individuals who might 31 00:01:14.000 --> 00:01:16.980 benefit from today's information, who are not 32 00:01:17.000 --> 00:01:18.980 attending today. You can direct them to 33 00:01:19.000 --> 00:01:22.980 infanthearing.org as well. I want to get a shot out of 34 00:01:23.000 --> 00:01:25.980 gratitude for our interpreters and captioners 35 00:01:26.000 --> 00:01:28.980 today, for helping make this meeting more accessible 36 00:01:29.000 --> 00:01:31.980 for those who may be in attendance. 37 00:01:32.000 --> 00:01:33.980 Excuse me. 38 00:01:34.000 --> 00:01:36.980 We are going to have our presenters 39 00:01:37.000 --> 00:01:38.980 present for the next little while, 40 00:01:39.000 --> 00:01:42.980 and then when they are done, we will invite you 41 00:01:43.000 --> 00:01:43.980 to submit your questions 42 00:01:44.000 --> 00:01:45.980 in the Q&A 43 00:01:46.000 --> 00:01:46.980 field. 44 00:01:47.000 --> 00:01:49.980 But refrain from doing that 45 00:01:50.000 --> 00:01:52.980 until we invite you to do so. 46 00:01:53.000 --> 00:01:57.980 And then we will open up for a discussion at the end. 47 00:01:58.000 --> 00:01:59.980 So, we are joined today 48 00:02:00.000 --> 00:02:01.980 by an incredible group of colleagues 49 00:02:02.000 --> 00:02:04.980 from the great state of Illinois. 50 00:02:05.000 --> 00:02:07.980 I will allow them to introduce themselves, 51 00:02:08.000 --> 00:02:10.980 I will hand it over to them now. 52 00:02:11.000 --> 00:02:13.980 Ginger, are you going to kick it off? 53 00:02:14.000 --> 00:02:14.980 GINGER MULLIN: 54 00:02:15.000 --> 00:02:16.980 Thank you so much, I sure am. 55 00:02:17.000 --> 00:02:20.980 I name is Ginger Mullin and I of the Illinois 56 00:02:21.000 --> 00:02:22.980 EHDI coordinator. I would like to everyone 57 00:02:23.000 --> 00:02:25.980 ! I would like to welcome 58 00:02:26.000 --> 00:02:26.980 everybody to 59 00:02:27.000 --> 00:02:28.980 The Shift to Equality and Equity Through Direct 60 00:02:29.000 --> 00:02:31.980 Referrals to Parent-to-Parent Support. 61 00:02:32.000 --> 00:02:33.980 We appreciate the opportunity to share our 62 00:02:34.000 --> 00:02:37.980 experience in a safe space, as we all work together 63 00:02:38.000 --> 00:02:40.980 towards learning and improving. Today we ask for 64 00:02:41.000 --> 00:02:44.980 grace as we present, at times we may use specific terms, 65 00:02:45.000 --> 00:02:47.980 and they want everyone to understand that multiple 66 00:02:48.000 --> 00:02:50.980 terms may also be appropriate. Some examples 67 00:02:51.000 --> 00:02:54.980 are, for our state we use guide by your side. 68 00:02:55.000 --> 00:02:58.980 We believe the information is relevant to all types of 69 00:02:59.000 --> 00:03:00.980 family-based organizations. Another example, could be 70 00:03:01.000 --> 00:03:03.980 determined hearing loss. He could also use atypical 71 00:03:04.000 --> 00:03:05.980 hearing, or describe the type 72 00:03:06.000 --> 00:03:11.970 and degree of hearing loss. 73 00:03:11.990 --> 00:03:12.980 74 00:03:13.000 --> 00:03:16.980 With that we will move to our next slide, and people 75 00:03:17.000 --> 00:03:19.980 say welcome again! I would like to introduce you 76 00:03:20.000 --> 00:03:22.980 to the speakers today. We have Carrie Balian, who is 77 00:03:23.000 --> 00:03:26.980 our guide by your side coordinator. And she has 78 00:03:27.000 --> 00:03:31.980 been our Guide by Your Side 79 00:03:32.000 --> 00:03:35.980 coordinator since 2009, she is a parent, a true 80 00:03:36.000 --> 00:03:39.980 professional, and advocate, and a friend. As I said, I am 81 00:03:40.000 --> 00:03:42.980 Ginger Mullin, and I am an audiologist by 82 00:03:43.000 --> 00:03:45.980 training, I am currently at the Department of Public 83 00:03:46.000 --> 00:03:49.980 Health and I have been the EHDI coordinator since 2005. 84 00:03:50.000 --> 00:03:52.980 We also have Gabrielle Bires, she was a social 85 00:03:53.000 --> 00:03:55.980 service program letter at the Department of Public health 86 00:03:56.000 --> 00:03:59.980 and has recently taken a position with the CDC as a 87 00:04:00.000 --> 00:04:02.980 public health advisor for the center for surveillance, 88 00:04:03.000 --> 00:04:05.980 epidemiology, and laboratory services. And Kate Jordan, 89 00:04:06.000 --> 00:04:08.980 she is also an audiologist and currently the vision and 90 00:04:09.000 --> 00:04:10.980 hearing consulted at the department, 91 00:04:11.000 --> 00:04:14.980 and has been part of the EHDI team for many years. 92 00:04:15.000 --> 00:04:18.980 Each of them may share a little bit more with you, as 93 00:04:19.000 --> 00:04:20.980 they present. Our other sound beginnings 94 00:04:21.000 --> 00:04:23.980 leaders that are not presenting today are Andrea 95 00:04:24.000 --> 00:04:26.980 Marwah, Andrea Johnson. In addition, the Illinois 96 00:04:27.000 --> 00:04:27.980 EHDI program is supported 97 00:04:28.000 --> 00:04:31.980 through numerous collaborations 98 00:04:32.000 --> 00:04:33.980 . And the program it is 99 00:04:34.000 --> 00:04:36.980 supported by a total of five Illinois EHDI 100 00:04:37.000 --> 00:04:38.980 Department of Public Health staff. 101 00:04:39.000 --> 00:04:40.980 12 Illinois guy by your side staff, 102 00:04:41.000 --> 00:04:42.980 and 16 hands and 103 00:04:43.000 --> 00:04:43.980 board members. 104 00:04:44.000 --> 00:04:46.980 We would like to thank 105 00:04:47.000 --> 00:04:49.980 The Centers for Disease Control and Prevention and 106 00:04:50.000 --> 00:04:52.980 the health resource service administration for their 107 00:04:53.000 --> 00:04:54.980 funding of our projects. Next slide. 108 00:04:55.000 --> 00:04:57.980 Today we are going to address the following 109 00:04:58.000 --> 00:05:00.980 , which are steps in our timeline 110 00:05:01.000 --> 00:05:02.980 that led to direct referrals. 111 00:05:03.000 --> 00:05:04.980 Areas that were impacted by direct referrals, 112 00:05:05.000 --> 00:05:07.980 and the shift in family needs 113 00:05:08.000 --> 00:05:08.980 since direct referrals began. 114 00:05:09.000 --> 00:05:11.980 Next slide. 115 00:05:12.000 --> 00:05:13.980 So, how did we get there? 116 00:05:14.000 --> 00:05:14.980 Illinois Sound Beginnings 117 00:05:15.000 --> 00:05:16.980 has been a collaboration 118 00:05:17.000 --> 00:05:21.980 since its inception. Originally, 119 00:05:22.000 --> 00:05:23.980 sound beginnings stood for the collaboration between the 120 00:05:24.000 --> 00:05:26.980 Illinois Department of Public Health, division of 121 00:05:27.000 --> 00:05:29.980 specialist care for children, and the Bureau of early 122 00:05:30.000 --> 00:05:31.980 intervention. Now, Illinois Sound 123 00:05:32.000 --> 00:05:34.980 Beginnings also includes the strong and robust partnership 124 00:05:35.000 --> 00:05:38.980 with Illinois Hands & Voices Chapter and God by your side. 125 00:05:39.000 --> 00:05:42.980 The Illinois 126 00:05:43.000 --> 00:05:45.980 Department is headed 127 00:05:46.000 --> 00:05:48.980 -- is fully grant funded. 128 00:05:49.000 --> 00:05:52.980 Through the years the EHDI program has strived to meet 129 00:05:53.000 --> 00:05:56.980 the EHDI one, three, six goals in a timely manner. 130 00:05:57.000 --> 00:05:59.980 We began our parent to parent support in 2005, 131 00:06:00.000 --> 00:06:05.970 and started our night by your side program in 2009. 132 00:06:05.990 --> 00:06:06.980 133 00:06:07.000 --> 00:06:10.980 It took a lot of planning, we had many false starts. 134 00:06:11.000 --> 00:06:13.980 We relied on specific timing, and we required a lot 135 00:06:14.000 --> 00:06:17.980 of flex ability to initiate our parent to parent support 136 00:06:18.000 --> 00:06:21.980 for families of children with a suspected or confirmed 137 00:06:22.000 --> 00:06:22.980 hearing loss. 138 00:06:23.000 --> 00:06:28.980 The parent voice was needed in the Illinois EHDI program 139 00:06:29.000 --> 00:06:31.980 to help us understand the needs of our geographically, 140 00:06:32.000 --> 00:06:33.980 culturally, racially, and economically diverse state. 141 00:06:34.000 --> 00:06:36.980 The provision of parent to parent support which includes 142 00:06:37.000 --> 00:06:38.980 unbiased information, resources, and one-on-one 143 00:06:39.000 --> 00:06:40.980 support by transparent guides, 144 00:06:41.000 --> 00:06:42.980 was the beginning of our family-based organization 145 00:06:43.000 --> 00:06:44.980 and the states collaborative journey. 146 00:06:45.000 --> 00:06:49.980 Since 2005, 147 00:06:50.000 --> 00:06:51.980 at least annually, both programs have reviewed goals 148 00:06:52.000 --> 00:06:54.980 of both the state and the family-based organization. 149 00:06:55.000 --> 00:06:55.980 Each 150 00:06:56.000 --> 00:06:57.980 audio (Audio interference) 151 00:06:58.000 --> 00:07:01.980 has needs 152 00:07:02.000 --> 00:07:05.980 , and we need to listen to one another. Collectively, 153 00:07:06.000 --> 00:07:08.980 we wrote of numerous 154 00:07:09.000 --> 00:07:09.980 proposals, goals, activities, and 155 00:07:10.000 --> 00:07:10.980 justifications. Unfortunately, 156 00:07:11.000 --> 00:07:14.980 not all of them were used but we were prepared. 157 00:07:15.000 --> 00:07:16.980 We also saluted 158 00:07:17.000 --> 00:07:20.980 solicited for additional partners. 159 00:07:21.000 --> 00:07:22.980 Our numbers dropped in the early 2010, 160 00:07:23.000 --> 00:07:24.980 had trouble with sustainability 161 00:07:25.000 --> 00:07:28.980 as well as widespread reach. 162 00:07:29.000 --> 00:07:30.980 The EHDI program has had increasing programmatic 163 00:07:31.000 --> 00:07:33.980 demands. But, 164 00:07:34.000 --> 00:07:36.980 we also wanted to retain our commitment to parent support. 165 00:07:37.000 --> 00:07:38.980 As a partnership, 166 00:07:39.000 --> 00:07:42.980 the two entities have had to pivot many times together. 167 00:07:43.000 --> 00:07:46.980 And come up with atypical solutions to keep the program 168 00:07:47.000 --> 00:07:47.980 viable, 169 00:07:48.000 --> 00:07:51.980 and expand our reach to all areas of the state. As we 170 00:07:52.000 --> 00:07:55.980 will explain later. 171 00:07:56.000 --> 00:07:59.980 You can read more about our activities and some unique 172 00:08:00.000 --> 00:08:02.980 ideas in our annual reports that are posted on the 173 00:08:03.000 --> 00:08:05.980 Department of Public Health's website. Today, we will 174 00:08:06.000 --> 00:08:08.980 highlight our direct referral project which has 175 00:08:09.000 --> 00:08:10.980 significantly impacted our journey towards equity for 176 00:08:11.000 --> 00:08:13.980 all Illinois families. Next slide, please. It is 177 00:08:14.000 --> 00:08:16.980 also important to remember 178 00:08:17.000 --> 00:08:20.980 that sometimes the right people need to be at the 179 00:08:21.000 --> 00:08:22.980 table. Sometimes you have to wait 180 00:08:23.000 --> 00:08:26.980 for someone to retire or move on before you present an 181 00:08:27.000 --> 00:08:29.980 idea. Or again. Also you need to 182 00:08:30.000 --> 00:08:32.980 have ideas ready to respond to opportunities on very 183 00:08:33.000 --> 00:08:34.980 short notice. Writing up ideas, 184 00:08:35.000 --> 00:08:38.980 even in a rough draft form, will help you embrace a time 185 00:08:39.000 --> 00:08:40.980 sensitive opportunities. Next slide. Opportunities 186 00:08:41.000 --> 00:08:42.980 often come from hallway conversations with people 187 00:08:43.000 --> 00:08:46.980 who have related missions. You always have to keep in 188 00:08:47.000 --> 00:08:48.980 mind 189 00:08:49.000 --> 00:08:51.980 what each side can gain from the collaboration. Just 190 00:08:52.000 --> 00:08:54.980 because something is needed and could improve outcomes 191 00:08:55.000 --> 00:08:58.980 for everyone, 192 00:08:59.000 --> 00:09:00.980 – and could improve outcomes, everyone needs to 193 00:09:01.000 --> 00:09:04.980 feel like they are getting something for their efforts. 194 00:09:05.000 --> 00:09:07.980 Ryan needs to be sustainable and allow those involved 195 00:09:08.000 --> 00:09:12.980 to maximize efficiency and resources. 196 00:09:13.000 --> 00:09:15.980 We need to have honest conversations about what 197 00:09:16.000 --> 00:09:17.980 entities define as their mission, 198 00:09:18.000 --> 00:09:20.980 what boundaries exist and what funding 199 00:09:21.000 --> 00:09:23.980 exists. In a time with limited 200 00:09:24.000 --> 00:09:25.980 bandwidth and resources we must be innovative 201 00:09:26.000 --> 00:09:28.980 so our efforts can be scalable and sustainable. 202 00:09:29.000 --> 00:09:31.980 Single idea programs cannot survive in the current 203 00:09:32.000 --> 00:09:35.980 environment. Next slide. 204 00:09:36.000 --> 00:09:39.980 As I stated, the Illinois EHDI program is grant funded, 205 00:09:40.000 --> 00:09:42.980 and we are responsible to those of funders. 206 00:09:43.000 --> 00:09:45.980 We must maximize funds by leveraging resources and 207 00:09:46.000 --> 00:09:47.980 partnerships. Illinois hands envoy's is God 208 00:09:48.000 --> 00:09:52.980 by your side currently receives grant funding 209 00:09:53.000 --> 00:09:54.980 from the Department of Public Health 210 00:09:55.000 --> 00:09:56.980 . 211 00:09:57.000 --> 00:10:01.980 Activities go beyond one-on-one support, 212 00:10:02.000 --> 00:10:05.980 and include the inclusion of parents at all stages of the 213 00:10:06.000 --> 00:10:07.980 EHDI program. For activities that for 214 00:10:08.000 --> 00:10:09.980 outside the EHDI scope, hands and 215 00:10:10.000 --> 00:10:12.980 voices 216 00:10:13.000 --> 00:10:16.980 help with activities. 217 00:10:17.000 --> 00:10:20.980 Next slide. 218 00:10:21.000 --> 00:10:23.980 We cannot talk about family support 219 00:10:24.000 --> 00:10:24.980 without mentioning 220 00:10:25.000 --> 00:10:27.980 FEHDI, or the family EHDI project. 221 00:10:28.000 --> 00:10:33.980 HRSA created the 222 00:10:34.000 --> 00:10:36.980 projects to increase 20% from baseline, the number of 223 00:10:37.000 --> 00:10:42.980 families enrolled in 224 00:10:43.000 --> 00:10:46.980 support programs from six months of age. At the time of 225 00:10:47.000 --> 00:10:48.980 initial funding definitions for family support were 226 00:10:49.000 --> 00:10:51.980 defined at the state level. A grassroots workgroup was 227 00:10:52.000 --> 00:10:53.980 formed to identify 228 00:10:54.000 --> 00:10:56.980 standards for enrollment so it could be reported 229 00:10:57.000 --> 00:10:58.980 universally. In addition to definitions, a 230 00:10:59.000 --> 00:11:01.980 data entry form was created 231 00:11:02.000 --> 00:11:04.980 to assist in pulling child specific data from EHDI's 232 00:11:05.000 --> 00:11:09.980 systems. 233 00:11:10.000 --> 00:11:12.980 Standard data collection across EHDI programs is vital 234 00:11:13.000 --> 00:11:15.980 to improving the EHDI system. And meeting the needs of 235 00:11:16.000 --> 00:11:18.980 families we serve in an equitable manner, across the 236 00:11:19.000 --> 00:11:20.980 country. FEHDI definitions and 237 00:11:21.000 --> 00:11:22.980 information and be found@infanthearing.org, or 238 00:11:23.000 --> 00:11:25.980 contact any of us. 239 00:11:26.000 --> 00:11:28.980 These data points are critical to making success 240 00:11:29.000 --> 00:11:31.980 and progress. And I would like to read you 241 00:11:32.000 --> 00:11:35.980 a quote from one of the FEHDI participants to underline the 242 00:11:36.000 --> 00:11:39.980 importance of people coming together for mutual gain. The 243 00:11:40.000 --> 00:11:43.980 quote reads, "I felt a sense of unity as we all came 244 00:11:44.000 --> 00:11:45.980 together to discuss parameters and definitions. 245 00:11:46.000 --> 00:11:49.980 It was refreshing to be part of something that could big 246 00:11:50.000 --> 00:11:53.980 reporting not only easier to figure out, but to have 247 00:11:54.000 --> 00:11:55.980 consistency between estates. This hopefully 248 00:11:56.000 --> 00:11:59.980 will allow us to see across the nation, how we are doing. 249 00:12:00.000 --> 00:12:02.980 Celebrate our successes, and evaluate areas to improve. 250 00:12:03.000 --> 00:12:05.980 I have hope that this will bring more 251 00:12:06.000 --> 00:12:08.980 parent partners to the table 252 00:12:09.000 --> 00:12:12.980 as a part of a larger team creating connections, 253 00:12:13.000 --> 00:12:15.980 developing rules, a sense of purpose, and a mindset of 254 00:12:16.000 --> 00:12:19.980 quality improvement." That is the end of the quote. 255 00:12:20.000 --> 00:12:22.980 You can see that we have to make an environment that 256 00:12:23.000 --> 00:12:23.980 benefits many 257 00:12:24.000 --> 00:12:27.980 when resources are few. But if we come together, that 258 00:12:28.000 --> 00:12:29.980 is easy to do. Next slide. 259 00:12:30.000 --> 00:12:32.980 KATE JORDAN: 260 00:12:33.000 --> 00:12:35.980 Hello, this is Kate Jordan, I am an ideologist 261 00:12:36.000 --> 00:12:37.980 and consultant with the EHDI 262 00:12:38.000 --> 00:12:40.980 Illinois program. Today I would like to talk to 263 00:12:41.000 --> 00:12:43.980 about the day-to-day processes 264 00:12:44.000 --> 00:12:45.980 and the management of the direct referrals. 265 00:12:46.000 --> 00:12:48.980 We began making direct referrals 266 00:12:49.000 --> 00:12:50.980 guide 267 00:12:51.000 --> 00:12:52.980 by your side in July 2020, 268 00:12:53.000 --> 00:12:56.980 just over two years. 269 00:12:57.000 --> 00:13:00.980 And 270 00:13:01.000 --> 00:13:03.980 hi track our EHDI information system is a flex 271 00:13:04.000 --> 00:13:05.980 both system and it was adapted 272 00:13:06.000 --> 00:13:09.980 for us to be able to make these direct referrals. 273 00:13:10.000 --> 00:13:12.980 The addition of this process really is integrated 274 00:13:13.000 --> 00:13:15.980 into hi track, and it has been seamless 275 00:13:16.000 --> 00:13:18.980 and really very little extra work for us. 276 00:13:19.000 --> 00:13:22.980 Because along with our workflow, 277 00:13:23.000 --> 00:13:25.980 -- it goes right along with our workflow. 278 00:13:26.000 --> 00:13:27.980 This allows us to make 279 00:13:28.000 --> 00:13:30.980 erect referrals and follow-up 280 00:13:31.000 --> 00:13:33.980 communications within our stable and secure database, 281 00:13:34.000 --> 00:13:35.980 versus sending a lot of emails. 282 00:13:36.000 --> 00:13:38.980 Sending private information… About individuals. 283 00:13:39.000 --> 00:13:42.980 We do not have to include this, we can civilly say, " 284 00:13:43.000 --> 00:13:45.980 I shared a group of records with you, 285 00:13:46.000 --> 00:13:46.980 " 286 00:13:47.000 --> 00:13:51.980 and then they are able to get in high track and look 287 00:13:52.000 --> 00:13:53.980 for themselves. They were given access with 288 00:13:54.000 --> 00:13:56.980 unique groups, and tailored access. 289 00:13:57.000 --> 00:13:58.980 liking. I will also do a quick audio 290 00:13:59.000 --> 00:14:02.980 check with each of our presenters here. When I call 291 00:14:03.000 --> 00:14:06.980 your name, if you could speak up for a moment and maybe say 292 00:14:07.000 --> 00:14:08.980 the title of today's webinar. 293 00:14:09.000 --> 00:14:10.980 ... Some may have read only 294 00:14:11.000 --> 00:14:13.980 versus editing access to hide track. 295 00:14:14.000 --> 00:14:19.970 As new users, they have the same training as our staff had 296 00:14:19.990 --> 00:14:20.980 297 00:14:21.000 --> 00:14:23.980 , as any users would be required to do. 298 00:14:24.000 --> 00:14:24.980 For our 299 00:14:25.000 --> 00:14:28.980 weekly process 300 00:14:29.000 --> 00:14:32.980 hearing loss reports that come in through the week, 301 00:14:33.000 --> 00:14:38.980 they are entered into the database 302 00:14:39.000 --> 00:14:42.980 and we put them in a to do basket of newly diagnosed 303 00:14:43.000 --> 00:14:44.980 children. We checked the demographics 304 00:14:45.000 --> 00:14:50.970 against the 305 00:14:50.990 --> 00:15:00.980 306 00:15:01.000 --> 00:15:03.980 diagnostic database here in Illinois and enter a note 307 00:15:04.000 --> 00:15:06.980 with any other information that might be useful for 308 00:15:07.000 --> 00:15:09.980 calling the parent. For example, the child is 309 00:15:10.000 --> 00:15:13.980 still a patient in the NICU or the family speaks a 310 00:15:14.000 --> 00:15:16.980 language other than English. Spanish speaking families can 311 00:15:17.000 --> 00:15:20.980 be routed directly from apparent grad -- from parent 312 00:15:21.000 --> 00:15:23.980 guide who is bilingual. We can send a quick email 313 00:15:24.000 --> 00:15:26.980 telling them that information has been shared and after 314 00:15:27.000 --> 00:15:30.980 that they will have access to all the children there. So 315 00:15:31.000 --> 00:15:33.980 advantages have been that this routine meets our 316 00:15:34.000 --> 00:15:36.980 standard of making referrals within seven days. 317 00:15:37.000 --> 00:15:39.980 Typically the guide by your side coordinator will text 318 00:15:40.000 --> 00:15:43.980 families within a day and give them a heads up 319 00:15:44.000 --> 00:15:48.980 that the organization 320 00:15:49.000 --> 00:15:51.980 will be working from home and they should answer calls 321 00:15:52.000 --> 00:15:55.980 from unfamiliar numbers. They don't want to get stuck 322 00:15:56.000 --> 00:15:57.980 in a phone take circle. 323 00:15:58.000 --> 00:16:00.980 The next day, the guide will follow up with 324 00:16:01.000 --> 00:16:06.970 a telephone call. 325 00:16:06.990 --> 00:16:10.980 326 00:16:11.000 --> 00:16:13.980 Because they are in Hi-Track, they can 327 00:16:14.000 --> 00:16:15.980 immediately update demographics and enter notes 328 00:16:16.000 --> 00:16:18.980 from other referrals being made to other agencies such 329 00:16:19.000 --> 00:16:24.970 as EI which makes smoother referrals all around. 330 00:16:24.990 --> 00:16:32.980 331 00:16:33.000 --> 00:16:35.980 When families are contacted by other agencies they have 332 00:16:36.000 --> 00:16:39.980 already spoken to God by your side and hopefully they are 333 00:16:40.000 --> 00:16:43.980 aware of the process and this information leads them to 334 00:16:44.000 --> 00:16:46.980 make informed decisions. They are also able to enter 335 00:16:47.000 --> 00:16:49.980 appointments, or put notes in about how the conversation 336 00:16:50.000 --> 00:16:52.980 went. And they are able to use 337 00:16:53.000 --> 00:16:55.980 Hi-Track for their own processes and letters and 338 00:16:56.000 --> 00:16:57.980 documentation. To collect their own data. 339 00:16:58.000 --> 00:17:01.980 There is very little extra work, but big gains for 340 00:17:02.000 --> 00:17:04.980 timeliness, accuracy, and connection. CARRIE BALIAN: 341 00:17:05.000 --> 00:17:10.970 This is Carrie, as 342 00:17:10.990 --> 00:17:35.980 343 00:17:36.000 --> 00:17:39.980 Ginger mentioned I am mother my child is born deaf and I 344 00:17:40.000 --> 00:17:42.980 am Monahan's by your site coordinator. Starting out we 345 00:17:43.000 --> 00:17:46.980 were cautious about how many users had access to this data 346 00:17:47.000 --> 00:17:50.980 system and so we started with a few users when someone was 347 00:17:51.000 --> 00:17:55.980 sick or on vacation there is always somebody to be used as 348 00:17:56.000 --> 00:17:57.980 backup. We also trained our parent 349 00:17:58.000 --> 00:18:00.980 guide who is Spanish-speaking so she can input data 350 00:18:01.000 --> 00:18:03.980 directly for family she reached out to. Getting 351 00:18:04.000 --> 00:18:09.980 started we knew we would have plenty of data 352 00:18:10.000 --> 00:18:13.980 , and having data is great but how can you make it 353 00:18:14.000 --> 00:18:16.980 accessible for collection? What data points you need to 354 00:18:17.000 --> 00:18:19.980 show for your progress? As Ginger mentioned it just 355 00:18:20.000 --> 00:18:22.980 so happened that we were starting our direct referral 356 00:18:23.000 --> 00:18:25.980 process by participating in the FEHDI process. Having 357 00:18:26.000 --> 00:18:29.980 data points was really helpful and that we knew what 358 00:18:30.000 --> 00:18:33.980 was going to be recommended to the CBC in the future for 359 00:18:34.000 --> 00:18:36.980 consideration of parents supporting. So we built those 360 00:18:37.000 --> 00:18:40.980 data points into our data boys it -- database in 361 00:18:41.000 --> 00:18:42.980 Hi-Track and copy this process creating special 362 00:18:43.000 --> 00:18:46.980 forms for each of the different specialist roles as 363 00:18:47.000 --> 00:18:48.980 well. The next step after knowing 364 00:18:49.000 --> 00:18:51.980 which data we needed to collect was having a way to 365 00:18:52.000 --> 00:18:55.980 store it and collect – having a way to store it and having 366 00:18:56.000 --> 00:18:59.980 a way to collect it. So we created a custom letter 367 00:19:00.000 --> 00:19:01.980 in Hi-Track that we would populate information onto 368 00:19:02.000 --> 00:19:04.980 when we received the referrals. This custom letter 369 00:19:05.000 --> 00:19:07.980 became her intake form. We have additional fields on 370 00:19:08.000 --> 00:19:10.980 it that are empty, that we complete as the family is 371 00:19:11.000 --> 00:19:13.980 enrolling in the program. After a family and roles, the 372 00:19:14.000 --> 00:19:16.980 additional information is added into Hi-Track by one of 373 00:19:17.000 --> 00:19:22.970 the guy by your side program users. 374 00:19:22.990 --> 00:19:24.980 375 00:19:25.000 --> 00:19:28.980 This is a great way to see the timeline of have the 376 00:19:29.000 --> 00:19:31.980 processes move along. We kept in mind that we want 377 00:19:32.000 --> 00:19:36.980 to have our ducks in a roll before we roll out even if it 378 00:19:37.000 --> 00:19:40.980 meant we had to push back or start a goal. Our start date 379 00:19:41.000 --> 00:19:43.980 goal was July 2020, so we could start fresh at the 380 00:19:44.000 --> 00:19:47.980 beginning of our quarter. By July 20 we were ready and 381 00:19:48.000 --> 00:19:50.980 we started receiving those direct referrals. I would 382 00:19:51.000 --> 00:19:53.980 reach out to those who referred and complete the 383 00:19:54.000 --> 00:19:57.980 intake if the family chose to enroll in our program. This 384 00:19:58.000 --> 00:20:00.980 allowed our program to limit the number of people trained 385 00:20:01.000 --> 00:20:04.980 in Hi-Track, but it was also how our process was handled 386 00:20:05.000 --> 00:20:07.980 before our business agreement and direct referrals. I will 387 00:20:08.000 --> 00:20:11.980 share more later about the specialist roles at the end 388 00:20:12.000 --> 00:20:15.980 of our timeline. Now we are getting to the fun 389 00:20:16.000 --> 00:20:18.980 part of the presentation. Gabrielle is going to share 390 00:20:19.000 --> 00:20:21.980 the impact that our direct referrals have had. GABRIELLE 391 00:20:22.000 --> 00:20:25.980 BIRES: This is Gabby and I am a program planner with 392 00:20:26.000 --> 00:20:27.980 Illinois EHDI. As our teammates have 393 00:20:28.000 --> 00:20:31.980 mentioned we have discussed so far how we got started on 394 00:20:32.000 --> 00:20:37.970 the processes we have created. 395 00:20:37.990 --> 00:20:38.980 396 00:20:39.000 --> 00:20:42.980 Briefly, our partnership has allowed for all families to 397 00:20:43.000 --> 00:20:44.980 have an opportunity to receive support, and has 398 00:20:45.000 --> 00:20:48.980 helped us to meet national benchmarks for parent to 399 00:20:49.000 --> 00:20:50.980 parent support. It has increased parent 400 00:20:51.000 --> 00:20:53.980 education regarding early intervention which has led to 401 00:20:54.000 --> 00:20:56.980 improved enrollment and guide by your side and early 402 00:20:57.000 --> 00:20:59.980 intervention. We have had some new roles 403 00:21:00.000 --> 00:21:02.980 and resources to meet the needs of families. In the 404 00:21:03.000 --> 00:21:06.980 next couple slides we will show data before and after 405 00:21:07.000 --> 00:21:08.980 direct referrals. Before direct referrals the 406 00:21:09.000 --> 00:21:12.980 timeline is July families. In the next couple slides we 407 00:21:13.000 --> 00:21:15.980 will show data before and after direct referrals. 408 00:21:16.000 --> 00:21:18.980 Before direct referrals the timeline is July 2019 to June 409 00:21:19.000 --> 00:21:22.980 2020 and after is July 2022 June 2022. Our reach wasn't 410 00:21:23.000 --> 00:21:25.980 limited by only providers who shared parent parent 411 00:21:26.000 --> 00:21:28.980 supporter referred the family themselves. As you can see 412 00:21:29.000 --> 00:21:32.980 the map colored by God by your side regions we were 413 00:21:33.000 --> 00:21:36.980 able to reach every corner of the state from direct 414 00:21:37.000 --> 00:21:40.980 referrals 415 00:21:41.000 --> 00:21:43.980 . This is from the EHDI program 416 00:21:44.000 --> 00:21:46.980 to get by your side. Just to provide a quick 417 00:21:47.000 --> 00:21:50.980 example, if you look at the before map, you can see that 418 00:21:51.000 --> 00:21:53.980 no families are referred in the southernmost regions of 419 00:21:54.000 --> 00:21:57.980 our state and if we look at after there has been 420 00:21:58.000 --> 00:22:00.980 geographic expansion across the state. The agreement also 421 00:22:01.000 --> 00:22:03.980 encourages racial equity as it allows God by your side to 422 00:22:04.000 --> 00:22:06.980 reach out to every family which in turn strengthens 423 00:22:07.000 --> 00:22:07.980 family 424 00:22:08.000 --> 00:22:10.980 empowerment because they have the option to refer to 425 00:22:11.000 --> 00:22:12.980 parent to parent support. This graph shows that after 426 00:22:13.000 --> 00:22:14.980 direct referrals, parent to parent support 427 00:22:15.000 --> 00:22:18.980 has been able to be provided to more racially diverse 428 00:22:19.000 --> 00:22:20.980 families. The greatest increase we have 429 00:22:21.000 --> 00:22:23.980 seen so far has been in the black African-American and 430 00:22:24.000 --> 00:22:29.970 Hispanic families. 431 00:22:29.990 --> 00:22:32.980 432 00:22:33.000 --> 00:22:34.980 The previous referred families would always have a 433 00:22:35.000 --> 00:22:40.970 very complicated situation, communication barriers, or 434 00:22:40.990 --> 00:22:51.980 435 00:22:52.000 --> 00:22:54.980 their child's hearing warranted more support. This 436 00:22:55.000 --> 00:22:57.980 graph shows that as our partnership continues, we are 437 00:22:58.000 --> 00:23:01.980 able to deal with a variety of losses. The great part of 438 00:23:02.000 --> 00:23:04.980 this chart represents the year 2020, the peaches 2021, 439 00:23:05.000 --> 00:23:08.980 and the black is 2022. Similar to these findings for 440 00:23:09.000 --> 00:23:14.970 the type of loss and degree of loss, this pie chart 441 00:23:14.990 --> 00:23:20.980 442 00:23:21.000 --> 00:23:23.980 shows before direct referrals 5% of the infants 443 00:23:24.000 --> 00:23:27.980 that were enrolled in God by your side had a mild hearing 444 00:23:28.000 --> 00:23:32.980 loss and the rest of the pie chart was split between that 445 00:23:33.000 --> 00:23:34.980 profound and moderate. After direct referrals we 446 00:23:35.000 --> 00:23:39.980 were hoping for more of a shift, and if we go to the 447 00:23:40.000 --> 00:23:42.980 next slide you can actually see that after direct 448 00:23:43.000 --> 00:23:46.980 referrals are pie chart has a much more equal percentages 449 00:23:47.000 --> 00:23:49.980 for the different degrees of hearing loss. So our 450 00:23:50.000 --> 00:23:52.980 partnerships allowed us to offer services to needs and 451 00:23:53.000 --> 00:23:55.980 populations with the larger variety of degrees of hearing 452 00:23:56.000 --> 00:23:57.980 loss. This far we have discussed 453 00:23:58.000 --> 00:24:00.980 location, racial communities, and different hearing loss 454 00:24:01.000 --> 00:24:02.980 levels. Now we are talking about 455 00:24:03.000 --> 00:24:08.970 enrollment. So 456 00:24:08.990 --> 00:24:10.980 457 00:24:11.000 --> 00:24:14.980 because of our partnership we have been able to connect 458 00:24:15.000 --> 00:24:17.980 with families much earlier than before. This is shown in 459 00:24:18.000 --> 00:24:21.980 the charts as most infants after direct referrals, are 460 00:24:22.000 --> 00:24:24.980 referred to parent to parent support and enrolled in that 461 00:24:25.000 --> 00:24:28.980 birth to six months of age category. If you compare that 462 00:24:29.000 --> 00:24:32.980 from before to after, the majority of infants were in 463 00:24:33.000 --> 00:24:35.980 that two-year and older so we are working on reaching 464 00:24:36.000 --> 00:24:38.980 families earlier. Just to share some 465 00:24:39.000 --> 00:24:43.980 enrollments per year, in 2020 466 00:24:44.000 --> 00:24:46.980 Just to share some enrollments per year, in 20 467 00:24:47.000 --> 00:24:50.980 2021 families were enrolled in God by your side. In 2021, 468 00:24:51.000 --> 00:24:53.980 161 families and in 2022, 83 families. This only 469 00:24:54.000 --> 00:24:57.980 represents half a year data collection so we are on 470 00:24:58.000 --> 00:25:03.970 target to exceed 2021 enrollment data for this year. 471 00:25:03.990 --> 00:25:21.980 472 00:25:22.000 --> 00:25:24.980 Early on in our agreement, because we were serving 473 00:25:25.000 --> 00:25:27.980 children much younger in age than ever before, families 474 00:25:28.000 --> 00:25:30.980 were still learning about and navigating appropriate 475 00:25:31.000 --> 00:25:31.980 services. This graph shows what 476 00:25:32.000 --> 00:25:34.980 knowledge the family had about early intervention 477 00:25:35.000 --> 00:25:37.980 before and after direct referrals. Yes is when they 478 00:25:38.000 --> 00:25:40.980 were aware of early intervention services, no 479 00:25:41.000 --> 00:25:43.980 means they did not know, pending means they have 480 00:25:44.000 --> 00:25:47.980 received a call or paperwork but have not moved forward 481 00:25:48.000 --> 00:25:50.980 from there. H doubt means the child is 482 00:25:51.000 --> 00:25:53.980 too old for services. You can see this chart shows 483 00:25:54.000 --> 00:25:56.980 a dramatic differences in families in the know and 484 00:25:57.000 --> 00:26:00.980 pending in before or after referrals. There were simply 485 00:26:01.000 --> 00:26:03.980 no families in the before referrals so because of 486 00:26:04.000 --> 00:26:06.980 knowing this information are intakes of change. Intakes 487 00:26:07.000 --> 00:26:08.980 have been focused on expanding what early 488 00:26:09.000 --> 00:26:11.980 intervention is, the process of receiving services, and 489 00:26:12.000 --> 00:26:15.980 helping him was connect their local offices. How are we 490 00:26:16.000 --> 00:26:17.980 doing meeting our national benchmarks of providing 491 00:26:18.000 --> 00:26:21.980 parent to parent support no later than six month of age? 492 00:26:22.000 --> 00:26:25.980 Before direct referrals, only about 12% of our families 493 00:26:26.000 --> 00:26:27.980 were reaching this national chart. After direct referrals 494 00:26:28.000 --> 00:26:32.980 we had around 67 – 68% which is really amazing. Just to 495 00:26:33.000 --> 00:26:38.970 conclude with some quick stats 496 00:26:38.990 --> 00:26:44.980 497 00:26:45.000 --> 00:26:48.980 , because we are able to reach families earlier it was 498 00:26:49.000 --> 00:26:52.980 really great to see that 95% of families enrolled in God 499 00:26:53.000 --> 00:26:56.980 by your side between the years of 2020 through 2022 500 00:26:57.000 --> 00:26:58.980 became enrolled a repenting enrollment in early 501 00:26:59.000 --> 00:27:01.980 intervention as well. The average aid of infant 502 00:27:02.000 --> 00:27:04.980 enrollment after direct referrals is 6.8 months. And 503 00:27:05.000 --> 00:27:08.980 as I mentioned earlier, our partnerships allowed us to 504 00:27:09.000 --> 00:27:11.980 create new parent resources and 17 new ones have been 505 00:27:12.000 --> 00:27:15.980 created which Carrie will not go into more detail about. 506 00:27:16.000 --> 00:27:21.970 CARRIE BALIAN: 507 00:27:21.990 --> 00:27:25.980 508 00:27:26.000 --> 00:27:28.980 As GAVI mentioned, other activities we have been able 509 00:27:29.000 --> 00:27:32.980 to do is really engage the parent voice early on. I will 510 00:27:33.000 --> 00:27:36.980 start by sharing our focus groups. We have assembled 511 00:27:37.000 --> 00:27:39.980 diverse groups of parents together feedback on the 512 00:27:40.000 --> 00:27:42.980 resources we use, program materials, and websites. In 513 00:27:43.000 --> 00:27:45.980 addition to discussing the intake process and messaging 514 00:27:46.000 --> 00:27:48.980 used when serving families with children identified a 515 00:27:49.000 --> 00:27:50.980 part of fury. Another product of our 516 00:27:51.000 --> 00:27:53.980 agreement were our snippets. Serving families younger men 517 00:27:54.000 --> 00:27:56.980 that they were just beginning to process understanding the 518 00:27:57.000 --> 00:27:59.980 diagnosis. After seeing this week after 519 00:28:00.000 --> 00:28:02.980 week, the idea of crating out one page handout with brief 520 00:28:03.000 --> 00:28:06.980 bullet points and QR codes to take them traditional 521 00:28:07.000 --> 00:28:08.980 learning was born. When deciding what to call 522 00:28:09.000 --> 00:28:13.980 them, the idea of a snippet of information came to mind 523 00:28:14.000 --> 00:28:16.980 and so our acronym is simple and informative parent to 524 00:28:17.000 --> 00:28:19.980 parent education tools. We shared how families were 525 00:28:20.000 --> 00:28:23.980 impacted by her switch to referrals. But how does this 526 00:28:24.000 --> 00:28:26.980 impact our team? One of the impacts, the 527 00:28:27.000 --> 00:28:28.980 biggest impact we had was understanding equality, 528 00:28:29.000 --> 00:28:32.980 equity, and justice. And be able to have honest 529 00:28:33.000 --> 00:28:35.980 and open conversations how to improve where we were. This 530 00:28:36.000 --> 00:28:39.980 ended up leading to another new role in our team. This 531 00:28:40.000 --> 00:28:42.980 role is our diversity and equity infusion specialist. 532 00:28:43.000 --> 00:28:45.980 Earlier this year we discussed the idea to want 533 00:28:46.000 --> 00:28:49.980 more of a leadership role and the idea was perfect 534 00:28:50.000 --> 00:28:52.980 because we had just added on more Spanish-speaking guides 535 00:28:53.000 --> 00:28:58.970 that could serve the Spanish speaking families we had 536 00:28:58.990 --> 00:29:00.980 537 00:29:01.000 --> 00:29:02.980 Our diversity equity and infusion specialist, 538 00:29:03.000 --> 00:29:05.980 provides 539 00:29:06.000 --> 00:29:07.980 supporting partners for the improvement of community 540 00:29:08.000 --> 00:29:10.980 outcomes within disparate populations 541 00:29:11.000 --> 00:29:14.980 while protecting the privacy of families. 542 00:29:15.000 --> 00:29:18.980 Lydia has shared a quote of what it means to be in this 543 00:29:19.000 --> 00:29:20.980 role. "Being a first generation 544 00:29:21.000 --> 00:29:24.980 Mexican-American needs more than a language 545 00:29:25.000 --> 00:29:26.980 barrier. Culture, ethnicity, patience 546 00:29:27.000 --> 00:29:27.980 and representation matters. 547 00:29:28.000 --> 00:29:29.980 Underserved communities need and deserve 548 00:29:30.000 --> 00:29:34.980 equal resources." 549 00:29:35.000 --> 00:29:35.980 So, I mentioned earlier 550 00:29:36.000 --> 00:29:37.980 that 551 00:29:38.000 --> 00:29:43.970 SNIPPETS 552 00:29:43.990 --> 00:29:45.980 553 00:29:46.000 --> 00:29:48.980 were created from the needs of earlier diagnosed families 554 00:29:49.000 --> 00:29:52.980 we were serving. We are going to dive a little 555 00:29:53.000 --> 00:29:55.980 deeper into what our team experienced serving families 556 00:29:56.000 --> 00:29:58.980 before direct referrals, and the shift that happened after 557 00:29:59.000 --> 00:30:02.980 direct referrals were in place. The first shift was 558 00:30:03.000 --> 00:30:05.980 that the families we were serving had babies. Sometimes 559 00:30:06.000 --> 00:30:09.980 they were less than one month old, and the family had 560 00:30:10.000 --> 00:30:12.980 potentially just been told about diagnosis one week 561 00:30:13.000 --> 00:30:15.980 before we spoke. This often made us the first 562 00:30:16.000 --> 00:30:19.980 point in of contact they were gathering information from to 563 00:30:20.000 --> 00:30:21.980 understand the diagnosis, and the next steps. 564 00:30:22.000 --> 00:30:25.980 Because of this, you should not put a time limit on the 565 00:30:26.000 --> 00:30:28.980 initial call. Listen, let them share, and 566 00:30:29.000 --> 00:30:32.980 do not forget to be that parent. Remember what it was 567 00:30:33.000 --> 00:30:35.980 like and how overwhelmed you felt after your child's 568 00:30:36.000 --> 00:30:38.980 diagnosis. I cannot tell you how many 569 00:30:39.000 --> 00:30:42.980 times I have heard from a family, "I do not even know 570 00:30:43.000 --> 00:30:46.980 what I need to know. What will happen next?" I 571 00:30:47.000 --> 00:30:49.980 connect with them by saying that I remember feeling that 572 00:30:50.000 --> 00:30:54.980 same way, that is what we are here for. By talking to a 573 00:30:55.000 --> 00:30:58.980 parent who is a bit further ahead on the journey they 574 00:30:59.000 --> 00:31:01.980 have a safe place to ask questions and understand 575 00:31:02.000 --> 00:31:04.980 those next steps. I also encourage them to keep 576 00:31:05.000 --> 00:31:07.980 asking. If there is something that 577 00:31:08.000 --> 00:31:10.980 they asked that they are still unsure about, or maybe 578 00:31:11.000 --> 00:31:14.980 they forgot the answer, they should not hesitate to ask 579 00:31:15.000 --> 00:31:16.980 again. It is all new, and it may 580 00:31:17.000 --> 00:31:20.980 take some time to get comfortable with. What I also 581 00:31:21.000 --> 00:31:24.980 found is that they are unsure of who does what, and what 582 00:31:25.000 --> 00:31:28.980 their babies hearing test results mean. I ask if I can 583 00:31:29.000 --> 00:31:32.980 send them information by email. On some of the 584 00:31:33.000 --> 00:31:35.980 resources and organizations that will be reaching out to 585 00:31:36.000 --> 00:31:38.980 them, so they can better understand why those 586 00:31:39.000 --> 00:31:41.980 providers are calling, and how they might help their 587 00:31:42.000 --> 00:31:43.980 family. By walking the family through 588 00:31:44.000 --> 00:31:47.980 what to expect next, you are also able to share what is 589 00:31:48.000 --> 00:31:50.980 typically appropriate for recommended providers, for a 590 00:31:51.000 --> 00:31:55.980 child who is deaf or hard of hearing. But also what to do 591 00:31:56.000 --> 00:31:58.980 if they do not hear from them. When they should be 592 00:31:59.000 --> 00:32:00.980 reaching out. They realized that their 593 00:32:01.000 --> 00:32:04.980 guide is more than a person to chat with him a it is 594 00:32:05.000 --> 00:32:06.980 someone who can help them understand services that are 595 00:32:07.000 --> 00:32:09.980 available to them, and where to turn when you receive 596 00:32:10.000 --> 00:32:12.980 mixed messages. In the past when we were an 597 00:32:13.000 --> 00:32:15.980 opt in program, we would get referrals of complex 598 00:32:16.000 --> 00:32:17.980 families, severe losses, and potential cochlear implant 599 00:32:18.000 --> 00:32:19.980 candidates. Not that those are a bad 600 00:32:20.000 --> 00:32:22.980 thing, but I think providers only offered services to 601 00:32:23.000 --> 00:32:24.980 those they felt would need support. Rather than 602 00:32:25.000 --> 00:32:26.980 informing all families about our services. After our 603 00:32:27.000 --> 00:32:29.980 direct referrals, we saw a huge variety of hearing 604 00:32:30.000 --> 00:32:30.980 differences. Unilateral, mild, (unknown 605 00:32:31.000 --> 00:32:31.980 term) 606 00:32:32.000 --> 00:32:34.980 conductive, and so forth. After experiencing this shift, 607 00:32:35.000 --> 00:32:37.980 we saw the areas where our Guide By Your Side 608 00:32:38.000 --> 00:32:39.980 team 609 00:32:40.000 --> 00:32:42.980 did have that direct experience but although they 610 00:32:43.000 --> 00:32:45.980 had training and resources to share, we wanted to consider 611 00:32:46.000 --> 00:32:46.980 adding 612 00:32:47.000 --> 00:32:48.980 to the team in some of these areas or updating our 613 00:32:49.000 --> 00:32:49.980 trainings. 614 00:32:50.000 --> 00:32:52.980 When our program was and often in a model, we 615 00:32:53.000 --> 00:32:53.980 typically matched 616 00:32:54.000 --> 00:32:55.980 families with a guide in their regional area. Now we 617 00:32:56.000 --> 00:32:56.980 are finding 618 00:32:57.000 --> 00:33:00.980 that the regions do not matter as much, and we tend 619 00:33:01.000 --> 00:33:02.980 to match more 620 00:33:03.000 --> 00:33:04.980 taste on the diagnosis, additional health concerns, 621 00:33:05.000 --> 00:33:08.980 and the ages of their children. 622 00:33:09.000 --> 00:33:11.980 Before direct referrals we saw very few requests for 623 00:33:12.000 --> 00:33:15.980 support to families where the parents were deaf themselves, 624 00:33:16.000 --> 00:33:18.980 or they spoke languages other than English or Spanish. 625 00:33:19.000 --> 00:33:20.980 Since we received referrals 626 00:33:21.000 --> 00:33:24.980 for all families whose child had been diagnosed as deaf or 627 00:33:25.000 --> 00:33:28.980 hard of hearing, we have had to work out how to serve 628 00:33:29.000 --> 00:33:31.980 families who spoke other languages. I also want to 629 00:33:32.000 --> 00:33:35.980 point out that we have connected with more deaf 630 00:33:36.000 --> 00:33:38.980 parents in the last 1.5 years who have had a child 631 00:33:39.000 --> 00:33:43.980 diagnosed as deaf or hard of hearing then we had in our 632 00:33:44.000 --> 00:33:46.980 entire 13 years of our program. There are two 633 00:33:47.000 --> 00:33:50.980 reasons why I believe this has happened. The first, all 634 00:33:51.000 --> 00:33:53.980 families are now referred to us. Providers do not assume 635 00:33:54.000 --> 00:33:57.980 that since the parents are deaf they do not need 636 00:33:58.000 --> 00:33:59.980 support. The second reason is that for 637 00:34:00.000 --> 00:34:03.980 those, where I see their primary language is ASL, I 638 00:34:04.000 --> 00:34:07.980 have a parent guide who is deaf reach out and explain 639 00:34:08.000 --> 00:34:10.980 what our program is. Then complete the intake if 640 00:34:11.000 --> 00:34:13.980 they want that ongoing support. We find the family 641 00:34:14.000 --> 00:34:16.980 feels comparable communicating in their own 642 00:34:17.000 --> 00:34:19.980 language and supported in their choices. We also found 643 00:34:20.000 --> 00:34:22.980 that in helping families early on in their journey, it 644 00:34:23.000 --> 00:34:26.980 prepared them to pay it forward. In our most recent 645 00:34:27.000 --> 00:34:29.980 call for applications 83% of those that applied previously 646 00:34:30.000 --> 00:34:33.980 had worked with a guide. Compared to 64% of applicants 647 00:34:34.000 --> 00:34:36.980 in 2020. The beauty of all this is 648 00:34:37.000 --> 00:34:40.980 they have experience on the other side of the table. They 649 00:34:41.000 --> 00:34:44.980 have had a sneak peak of the role of the guide. I think 650 00:34:45.000 --> 00:34:47.980 that with this Lived experience the applicants 651 00:34:48.000 --> 00:34:51.980 have a better understanding of the role, and it prepares 652 00:34:52.000 --> 00:34:54.980 them for what to expect, which increases our retention 653 00:34:55.000 --> 00:34:57.980 of guides. We have also had many newer 654 00:34:58.000 --> 00:35:00.980 families apply to be part of our ongoing quality 655 00:35:01.000 --> 00:35:03.980 improvement groups. So, support through COVID. 656 00:35:04.000 --> 00:35:07.980 And I just want to point out that… All this data, 657 00:35:08.000 --> 00:35:10.980 all of this happened during COVID. So I think that 658 00:35:11.000 --> 00:35:13.980 the stats and data really speak volumes 659 00:35:14.000 --> 00:35:17.980 for not only the impact of the Parent-to-Parent support, 660 00:35:18.000 --> 00:35:20.980 but what a crucial time in our journey of parenting 661 00:35:21.000 --> 00:35:23.980 to need the support as well. 662 00:35:24.000 --> 00:35:27.980 I have asked the team to share if there were any 663 00:35:28.000 --> 00:35:28.980 changes 664 00:35:29.000 --> 00:35:31.980 to support during COVID as compared to their experiences 665 00:35:32.000 --> 00:35:32.980 before the pandemic. 666 00:35:33.000 --> 00:35:36.980 They shared that there was a need for connections to food 667 00:35:37.000 --> 00:35:38.980 pantries, helping families navigate getting 668 00:35:39.000 --> 00:35:40.980 appointments, and 669 00:35:41.000 --> 00:35:43.980 rain storming the struggle of providers only allowing 670 00:35:44.000 --> 00:35:45.980 one person at appointments. 671 00:35:46.000 --> 00:35:49.980 Now that we have all had time to adjust to navigating 672 00:35:50.000 --> 00:35:53.980 life with COVID, I asked the guys if parent support looked 673 00:35:54.000 --> 00:35:57.980 the same as before COVID or if it was different. One 674 00:35:58.000 --> 00:36:01.980 died shared that the focus is shifting back to hearing 675 00:36:02.000 --> 00:36:03.980 loss. However, there are families 676 00:36:04.000 --> 00:36:05.980 who have lost loved ones, or their jobs, 677 00:36:06.000 --> 00:36:10.980 and overall stress and support is just different now. 678 00:36:11.000 --> 00:36:13.980 I mentioned earlier how, during our first year we 679 00:36:14.000 --> 00:36:16.980 explored other areas of support for specialist groups 680 00:36:17.000 --> 00:36:19.980 (?) shortly after starting our direct referrals we asked, 681 00:36:20.000 --> 00:36:21.980 what is next? 682 00:36:22.000 --> 00:36:23.980 It may have been crazy Alexis 683 00:36:24.000 --> 00:36:27.980 but we did. 684 00:36:28.000 --> 00:36:29.980 In October 2020 685 00:36:30.000 --> 00:36:30.980 we incorporated through a 686 00:36:31.000 --> 00:36:35.980 quality 687 00:36:36.000 --> 00:36:38.980 improvement process to the program partnerships, a 688 00:36:39.000 --> 00:36:40.980 specialist who follows up with families transitioning 689 00:36:41.000 --> 00:36:43.980 out of part C, 690 00:36:44.000 --> 00:36:46.980 early intervention, and into part B. US special education 691 00:36:47.000 --> 00:36:47.980 services under IDEA. 692 00:36:48.000 --> 00:36:52.980 I had concerns that since we were serving families 693 00:36:53.000 --> 00:36:55.980 younger in age that they would not get referred later, 694 00:36:56.000 --> 00:36:59.980 when times of transition happen. They would have the 695 00:37:00.000 --> 00:37:01.980 perception that if they accepted the Parent-to-Parent 696 00:37:02.000 --> 00:37:05.980 support services now, it would not be able to access 697 00:37:06.000 --> 00:37:06.980 them again later. 698 00:37:07.000 --> 00:37:10.980 In addition, due to COVID, I was fearful that those 699 00:37:11.000 --> 00:37:13.980 families who should be transitioning out of EI, 700 00:37:14.000 --> 00:37:16.980 would not be prepared for that change. All of these 701 00:37:17.000 --> 00:37:20.980 reasons prompted me to ask our Illinois EHDI team if it 702 00:37:21.000 --> 00:37:24.980 would be possible for us to create a transition special 703 00:37:25.000 --> 00:37:25.980 specialist role. 704 00:37:26.000 --> 00:37:28.980 Our transition specialist, Jaclyn, it's a list every 705 00:37:29.000 --> 00:37:32.980 month from our EHDI team of those who will be 706 00:37:33.000 --> 00:37:36.980 two years and six months. She then reaches out to check 707 00:37:37.000 --> 00:37:40.980 in with them, to see if they are aware of upcoming 708 00:37:41.000 --> 00:37:43.980 transition, and to send them a transition resource guide. 709 00:37:44.000 --> 00:37:46.980 We created to help families understand this process. 710 00:37:47.000 --> 00:37:51.980 This guide has a 12 topic areas with a brief overview 711 00:37:52.000 --> 00:37:56.980 of the topic, and a QR Code that will take them to a link 712 00:37:57.000 --> 00:37:57.980 with more information. 713 00:37:58.000 --> 00:38:00.980 The guide was created specifically to support this 714 00:38:01.000 --> 00:38:03.980 role, and is also available in Spanish. Then came 715 00:38:04.000 --> 00:38:07.980 another, what next moment. Enter our loss to follow-up or 716 00:38:08.000 --> 00:38:09.980 other LTF specialist. In February 21, 717 00:38:10.000 --> 00:38:14.980 the second role of loss to follow-up social 718 00:38:15.000 --> 00:38:16.980 specialist was introduced through our COVID private 719 00:38:17.000 --> 00:38:19.980 project rate 720 00:38:20.000 --> 00:38:24.980 . 721 00:38:25.000 --> 00:38:27.980 We were able to facilitate follow-up with families who 722 00:38:28.000 --> 00:38:29.980 did not make it for follow-up 723 00:38:30.000 --> 00:38:32.980 testing after a failed hearing screen. They would 724 00:38:33.000 --> 00:38:35.980 reach out to the family, answer questions, 725 00:38:36.000 --> 00:38:38.980 provide tips, to help them understand and increase the 726 00:38:39.000 --> 00:38:41.980 likelihood of a complete test. And provide support in 727 00:38:42.000 --> 00:38:45.980 finding facilities through EHDI towels, to go tooth for 728 00:38:46.000 --> 00:38:49.980 their diagnostic test. 729 00:38:50.000 --> 00:38:52.980 They would document their Commit occasion and results 730 00:38:53.000 --> 00:38:54.980 in Hi-Track. 731 00:38:55.000 --> 00:38:57.980 This created a connection with families, showing them 732 00:38:58.000 --> 00:39:00.980 that if the test did indeed confirm the hearing loss, 733 00:39:01.000 --> 00:39:03.980 that they would have support after the diagnosis. 734 00:39:04.000 --> 00:39:06.980 Since the initial rollout, we have tweaked the process 735 00:39:07.000 --> 00:39:09.980 and have dedicated one guide, 736 00:39:10.000 --> 00:39:12.980 Kelly, to a permanent role of LTS specialist. 737 00:39:13.000 --> 00:39:15.980 This role was a win-win for the 738 00:39:16.000 --> 00:39:17.980 EHDI and Guide By Your Side program. 739 00:39:18.000 --> 00:39:20.980 Because the parent 740 00:39:21.000 --> 00:39:23.980 who transitioned into this rule was beginning to 741 00:39:24.000 --> 00:39:27.980 question her elements as a guide. Her child was now 742 00:39:28.000 --> 00:39:31.980 older, and we were serving families very early on in the 743 00:39:32.000 --> 00:39:33.980 diagnosis. 744 00:39:34.000 --> 00:39:37.980 We were able to keep on a thoroughly trained and 745 00:39:38.000 --> 00:39:40.980 experienced team member while helping her feel just as 746 00:39:41.000 --> 00:39:43.980 resourceful and relevant to the cause. She has blossomed 747 00:39:44.000 --> 00:39:47.980 in this role, and takes pride in her 69% connection rate, 748 00:39:48.000 --> 00:39:51.980 and the amazing drop in the loss to follow-up percentage 749 00:39:52.000 --> 00:39:54.980 that the EHDI team has seen. Most recently, the diversity 750 00:39:55.000 --> 00:39:57.980 and equity infusion specialists, which I touched 751 00:39:58.000 --> 00:39:59.980 on earlier. 752 00:40:00.000 --> 00:40:02.980 The last point I want to mention is that the 753 00:40:03.000 --> 00:40:05.980 difference between the business approach and the 754 00:40:06.000 --> 00:40:09.980 squishy side of a parent approach. I believe deep in 755 00:40:10.000 --> 00:40:13.980 my heart that the success we have seen as a team is 756 00:40:14.000 --> 00:40:17.980 because as parents, we can relate, and they can relate 757 00:40:18.000 --> 00:40:19.980 to us. Kelly's success in dropping 758 00:40:20.000 --> 00:40:23.980 the loss to follow-up rate is in her passion to serve, 759 00:40:24.000 --> 00:40:27.980 and to see things through. While also sharing from her 760 00:40:28.000 --> 00:40:30.980 heart that she also once thought that the repeat 761 00:40:31.000 --> 00:40:33.980 hearing test was not necessary. I am not saying 762 00:40:34.000 --> 00:40:37.980 that our Illinois EHDI team is not passionate, because 763 00:40:38.000 --> 00:40:40.980 that is far from the case! But Parent-to-Parent support 764 00:40:41.000 --> 00:40:43.980 is just different. KATE JORDAN: This is Kate 765 00:40:44.000 --> 00:40:45.980 again. And this is a visual 766 00:40:46.000 --> 00:40:49.980 representation of the contact efforts made by the loss to 767 00:40:50.000 --> 00:40:52.980 follow-up specialist. This data is just pulled from 768 00:40:53.000 --> 00:40:53.980 February to July 2022. 769 00:40:54.000 --> 00:40:56.980 The reason for the small data set 770 00:40:57.000 --> 00:41:01.980 is that we actually had 771 00:41:02.000 --> 00:41:05.980 – Hi-Track made adjustments to our data system so we were 772 00:41:06.000 --> 00:41:09.980 able to pull this data. That was a Hi-Track update 773 00:41:10.000 --> 00:41:11.980 that went into place. In February. So, 774 00:41:12.000 --> 00:41:14.980 Kelly was able to contact 842 families 775 00:41:15.000 --> 00:41:18.980 . 59% responded. 776 00:41:19.000 --> 00:41:21.980 To a text or phone call. 777 00:41:22.000 --> 00:41:24.980 60% of her responses were from text messages. 778 00:41:25.000 --> 00:41:25.980 40% 779 00:41:26.000 --> 00:41:29.980 were from phone calls. 780 00:41:30.000 --> 00:41:31.980 73% of the families 781 00:41:32.000 --> 00:41:33.980 had no response 782 00:41:34.000 --> 00:41:34.980 at one instance. 783 00:41:35.000 --> 00:41:39.980 From this we learned 784 00:41:40.000 --> 00:41:42.980 that it will take multiple efforts to reach families and 785 00:41:43.000 --> 00:41:45.980 to build trust, and not to give up. 786 00:41:46.000 --> 00:41:46.980 For those families 787 00:41:47.000 --> 00:41:49.980 that were reached 788 00:41:50.000 --> 00:41:53.980 and asked about why they were not able to follow-up, 789 00:41:54.000 --> 00:41:56.980 some of the reasons were they did not have 790 00:41:57.000 --> 00:41:58.980 transportation, or there were scheduling conflicts. 791 00:41:59.000 --> 00:42:00.980 Next slide. 792 00:42:01.000 --> 00:42:02.980 I will get into talking about 793 00:42:03.000 --> 00:42:03.980 shared benefits. 794 00:42:04.000 --> 00:42:04.980 Just touching again 795 00:42:05.000 --> 00:42:07.980 on benefits 796 00:42:08.000 --> 00:42:09.980 to both the Illinois EHDI 797 00:42:10.000 --> 00:42:10.980 and 798 00:42:11.000 --> 00:42:12.980 to Hands & Voices 799 00:42:13.000 --> 00:42:14.980 Guide By Your Side. Next slide. 800 00:42:15.000 --> 00:42:17.980 Some quick data. 801 00:42:18.000 --> 00:42:19.980 Text messaging was our most successful 802 00:42:20.000 --> 00:42:23.980 loss to follow-up contacts effort. 803 00:42:24.000 --> 00:42:26.980 February and March were the most responsive months 804 00:42:27.000 --> 00:42:28.980 for the Guide By Your Side 805 00:42:29.000 --> 00:42:30.980 lost to follow-up efforts. 806 00:42:31.000 --> 00:42:32.980 And this is really… 807 00:42:33.000 --> 00:42:35.980 Interesting, for us. 808 00:42:36.000 --> 00:42:38.980 Because, this is right after the holiday season. 809 00:42:39.000 --> 00:42:39.980 And you know… 810 00:42:40.000 --> 00:42:42.980 Historically 811 00:42:43.000 --> 00:42:45.980 (Indiscernible) 812 00:42:46.000 --> 00:42:48.980 has had the least luck getting families who have 813 00:42:49.000 --> 00:42:49.980 children, 814 00:42:50.000 --> 00:42:55.970 who have been born over the holiday season, 815 00:42:55.990 --> 00:42:56.980 816 00:42:57.000 --> 00:43:00.980 in December and January to seek follow-up. That was a 817 00:43:01.000 --> 00:43:04.980 gap, so having this come in right on that tail is just 818 00:43:05.000 --> 00:43:08.980 more and more helpful. We have seen a drop from 27% 819 00:43:09.000 --> 00:43:11.980 , a full 10%, from 2020 820 00:43:12.000 --> 00:43:13.980 , a full 10%, from 2022 2021. 821 00:43:14.000 --> 00:43:18.980 The reports are still coming in. 822 00:43:19.000 --> 00:43:20.980 They have solidified an underside 823 00:43:21.000 --> 00:43:24.980 that number. Next slide. 824 00:43:25.000 --> 00:43:28.980 Just to quickly go over some of the benefits… 825 00:43:29.000 --> 00:43:29.980 During the COVID-19 pandemic 826 00:43:30.000 --> 00:43:35.980 , and even before that, 827 00:43:36.000 --> 00:43:39.980 at public health we were having difficulty meeting our 828 00:43:40.000 --> 00:43:42.980 1/3/6 goals in a timely manner. Our partnership with 829 00:43:43.000 --> 00:43:43.980 Hands & Voices 830 00:43:44.000 --> 00:43:46.980 Guide By Your Side has helped us reach additional 831 00:43:47.000 --> 00:43:50.980 families in more efficient ways. We were able to take 832 00:43:51.000 --> 00:43:53.980 advantage of them able to use more modern communication 833 00:43:54.000 --> 00:43:55.980 methods. Just texting… 834 00:43:56.000 --> 00:43:58.980 We already talked about how beneficial that has been and 835 00:43:59.000 --> 00:44:00.980 how successful that route has been. 836 00:44:01.000 --> 00:44:02.980 enrolled. We also needed support for 837 00:44:03.000 --> 00:44:05.980 referrals for English, Spanish, or ASL where that 838 00:44:06.000 --> 00:44:11.970 wasn't their first language (?). 839 00:44:11.990 --> 00:44:17.980 840 00:44:18.000 --> 00:44:20.980 These are parents living in the same community and are 841 00:44:21.000 --> 00:44:23.980 often more receptive interesting to focus for 842 00:44:24.000 --> 00:44:25.980 them. This raises the likelihood of 843 00:44:26.000 --> 00:44:29.980 parents to respond and take action. Hands and Voices God 844 00:44:30.000 --> 00:44:33.980 by your side gives parents the tools they need to make 845 00:44:34.000 --> 00:44:37.980 choices for what is right by their child and because they 846 00:44:38.000 --> 00:44:41.980 have an active 847 00:44:42.000 --> 00:44:44.980 education system and Hi-Track they can provide 848 00:44:45.000 --> 00:44:47.980 real-time updates and track their own outcomes and data. 849 00:44:48.000 --> 00:44:50.980 Parents worked alongside the EHDI program for growth and 850 00:44:51.000 --> 00:44:53.980 sustainability and they can overcome previously known 851 00:44:54.000 --> 00:44:54.980 barriers within the process. 852 00:44:55.000 --> 00:45:00.970 GINGER MULLIN: 853 00:45:00.990 --> 00:45:03.980 854 00:45:04.000 --> 00:45:08.980 I know we have shared a lot already but we have a few 855 00:45:09.000 --> 00:45:11.980 remaining things to share. Just a reminder that our 856 00:45:12.000 --> 00:45:14.980 journey was supported by our great full-time and part-time 857 00:45:15.000 --> 00:45:17.980 support staff. Our leadership team consists 858 00:45:18.000 --> 00:45:19.980 of myself, Gabby and Kate at the 859 00:45:20.000 --> 00:45:23.980 Department of Public health, as well as carry that you 860 00:45:24.000 --> 00:45:29.970 have heard from today and Andrea 861 00:45:29.990 --> 00:45:42.980 862 00:45:43.000 --> 00:45:46.980 mar why he was the director of Hands and Voices and 863 00:45:47.000 --> 00:45:49.980 Andrea Johnson who is the current president of Illinois 864 00:45:50.000 --> 00:45:52.980 Hands and Voices. Each of our Illinois team 865 00:45:53.000 --> 00:45:54.980 members have unique backgrounds and skills by 866 00:45:55.000 --> 00:45:58.980 allowing space and drawing out special skills to shine, 867 00:45:59.000 --> 00:46:02.980 we have been able to make the most progress during the 868 00:46:03.000 --> 00:46:08.970 pandemic when pivoting was essential. 869 00:46:08.990 --> 00:46:10.980 870 00:46:11.000 --> 00:46:13.980 So what is next? That is a question we 871 00:46:14.000 --> 00:46:17.980 constantly ask each other. Like many states, we do face 872 00:46:18.000 --> 00:46:20.980 changes in internal and external staffing. We have 873 00:46:21.000 --> 00:46:23.980 threats to funding, we have fatigue, and we have 874 00:46:24.000 --> 00:46:25.980 competing priorities. But thankfully through our 875 00:46:26.000 --> 00:46:28.980 collaboration we are able to leverage opportunities when 876 00:46:29.000 --> 00:46:31.980 barriers and threats arrive. Very often, one of the 877 00:46:32.000 --> 00:46:34.980 collaborating partners can help to keep the program 878 00:46:35.000 --> 00:46:37.980 moving forward when others experience roadblocks. It 879 00:46:38.000 --> 00:46:39.980 takes flexibility, conversations outside of nine 880 00:46:40.000 --> 00:46:43.980 – five, and way out of the box thinking. I think Carrie 881 00:46:44.000 --> 00:46:46.980 receives strange text messages from me all the time 882 00:46:47.000 --> 00:46:50.980 saying "Hey what about this" And at our meeting we 883 00:46:51.000 --> 00:46:53.980 discussed those ideas. Our current plans are in the 884 00:46:54.000 --> 00:46:56.980 following areas. First we would like to work 885 00:46:57.000 --> 00:46:59.980 on our website and social media. Our website is 886 00:47:00.000 --> 00:47:03.980 currently under a revamp and we want to increase access to 887 00:47:04.000 --> 00:47:06.980 parent materials. We have been reviewed -- 888 00:47:07.000 --> 00:47:09.980 revising wording so we are more culturally inclusive and 889 00:47:10.000 --> 00:47:12.980 we are translating all of our information into multiple 890 00:47:13.000 --> 00:47:15.980 languages. The website will be in 891 00:47:16.000 --> 00:47:18.980 Spanish and the snippets and other materials we hope to 892 00:47:19.000 --> 00:47:22.980 translate into the top 10 languages in Illinois. So we 893 00:47:23.000 --> 00:47:25.980 hope that you will still share seamlessly in those. We 894 00:47:26.000 --> 00:47:28.980 are working on marketing and enhancing our specialist 895 00:47:29.000 --> 00:47:30.980 roles. We want to introduce the 896 00:47:31.000 --> 00:47:36.970 philosophy... and 897 00:47:36.990 --> 00:47:38.980 898 00:47:39.000 --> 00:47:41.980 do some videos to examine that fostering joy. We also 899 00:47:42.000 --> 00:47:47.970 want to inform providers on trauma-informed care. 900 00:47:47.990 --> 00:47:55.980 901 00:47:56.000 --> 00:47:58.980 In the areas of continuous improvement, we will continue 902 00:47:59.000 --> 00:48:01.980 the health disparity analysis quantitative and qualitative. 903 00:48:02.000 --> 00:48:05.980 We will also do focus groups to provide a space for people 904 00:48:06.000 --> 00:48:09.980 to provide honest feedback, and to new ones that we plan 905 00:48:10.000 --> 00:48:15.970 to do are a Spanish-speaking and an African-American 906 00:48:15.990 --> 00:48:24.980 907 00:48:25.000 --> 00:48:27.980 or black focus group. Both of these providing 908 00:48:28.000 --> 00:48:30.980 essays space for a unique community to provide their 909 00:48:31.000 --> 00:48:33.980 feedback on how we can improve the EHDI system. Will 910 00:48:34.000 --> 00:48:36.980 also do continuous quality improvement for increased 911 00:48:37.000 --> 00:48:39.980 efficiency and data documentation in our EHDI 912 00:48:40.000 --> 00:48:41.980 system. Then there is always that 913 00:48:42.000 --> 00:48:44.980 sustainability we want to address. In the beginning we 914 00:48:45.000 --> 00:48:48.980 did have a business agreement. We ended up in a 915 00:48:49.000 --> 00:48:54.970 situation where 916 00:48:54.990 --> 00:48:55.980 917 00:48:56.000 --> 00:48:59.980 the players in our world had changed. We were able to 918 00:49:00.000 --> 00:49:02.980 propose doing a business agreement and our legal 919 00:49:03.000 --> 00:49:05.980 department helped us write that and create that between 920 00:49:06.000 --> 00:49:09.980 the Department of Public Health and Illinois Hands and 921 00:49:10.000 --> 00:49:12.980 Voices guide by your side. Because we have been dreaming 922 00:49:13.000 --> 00:49:18.970 about it for many years, 923 00:49:18.990 --> 00:49:21.980 924 00:49:22.000 --> 00:49:25.980 we had in our back pocket an outline of what we wanted it 925 00:49:26.000 --> 00:49:29.980 to include, so we were able to turn it around very 926 00:49:30.000 --> 00:49:31.980 quickly. When somebody just said "Hey 927 00:49:32.000 --> 00:49:35.980 maybe we could..." And we were right there with "Let's 928 00:49:36.000 --> 00:49:38.980 do it!". We want to go beyond that 929 00:49:39.000 --> 00:49:41.980 business agreement and have sustainability by embedding a 930 00:49:42.000 --> 00:49:44.980 lot of this into our administrative roles. 931 00:49:45.000 --> 00:49:48.980 Sometimes we still need to go back to our admit -- 932 00:49:49.000 --> 00:49:51.980 registration and our rules. We want to make sure that 933 00:49:52.000 --> 00:49:57.970 two-way communication is always required 934 00:49:57.990 --> 00:50:00.980 935 00:50:01.000 --> 00:50:03.980 with all stakeholders and further define who should be 936 00:50:04.000 --> 00:50:06.980 reported and the responsibility and timeline 937 00:50:07.000 --> 00:50:09.980 of that reporting. We also want to make sure 938 00:50:10.000 --> 00:50:12.980 that all patient level data and privacy is adhered to, 939 00:50:13.000 --> 00:50:16.980 and that security for all of that is that the most 940 00:50:17.000 --> 00:50:20.980 important level for all of us involved. Not just the 941 00:50:21.000 --> 00:50:24.980 department of public health, but also our vendor guide by 942 00:50:25.000 --> 00:50:26.980 your side or family-based organizations. We intend to 943 00:50:27.000 --> 00:50:30.980 keep working on resources for families and providers which 944 00:50:31.000 --> 00:50:33.980 we want to share seamlessly with everyone. We are 945 00:50:34.000 --> 00:50:36.980 promoting EHDI practices or the PEP materials for 946 00:50:37.000 --> 00:50:38.980 parents. We will continue to do the 947 00:50:39.000 --> 00:50:42.980 snippets which Carrie and Andrea have given birth to 948 00:50:43.000 --> 00:50:44.980 that idea. It has been hugely 949 00:50:45.000 --> 00:50:47.980 successful. We also want to look for what 950 00:50:48.000 --> 00:50:51.980 we can do for our deaf and hard of hearing guide in the 951 00:50:52.000 --> 00:50:54.980 future. We are not done yet, we 952 00:50:55.000 --> 00:50:58.980 always want to ask what's next because it heaped -- 953 00:50:59.000 --> 00:51:02.980 because it keeps us going but also helps us redefine our 954 00:51:03.000 --> 00:51:05.980 efficiency and effectiveness to the community we serve. So 955 00:51:06.000 --> 00:51:09.980 pivoting has been the key to get through Cove it in 956 00:51:10.000 --> 00:51:13.980 continuing to be the key to keep us moving forward in the 957 00:51:14.000 --> 00:51:17.980 challenging times.--COVID We want to thank all of you and 958 00:51:18.000 --> 00:51:20.980 we hope you go to our website. Know that that 959 00:51:21.000 --> 00:51:25.980 website is in a revamp so we hope you will go back often 960 00:51:26.000 --> 00:51:28.980 because there will be new things every time. WILLIAM 961 00:51:29.000 --> 00:51:33.980 EISERMAN: This is will 962 00:51:34.000 --> 00:51:37.980 , thank you for a great presentation. We have a few 963 00:51:38.000 --> 00:51:42.980 minutes for some questions so if any of you would like to 964 00:51:43.000 --> 00:51:44.980 post some questions to our presenters, you can type 965 00:51:45.000 --> 00:51:49.980 those in the Q&A box and I will read each question and 966 00:51:50.000 --> 00:51:52.980 invite our presenters to respond. The first question 967 00:51:53.000 --> 00:51:58.970 that has come in 968 00:51:58.990 --> 00:52:12.980 969 00:52:13.000 --> 00:52:16.980 reads as follows – it has to do with potential partnering 970 00:52:17.000 --> 00:52:18.980 with other established parent to parent support 971 00:52:19.000 --> 00:52:21.980 organizations. The question reads – there is 972 00:52:22.000 --> 00:52:25.980 a parent to parent program in most states. Illinois is one 973 00:52:26.000 --> 00:52:28.980 that there is not an established program. Is there 974 00:52:29.000 --> 00:52:31.980 any reason for not involving the established programs in 975 00:52:32.000 --> 00:52:34.980 other states, in our state referrals are often done 976 00:52:35.000 --> 00:52:37.980 through the established program which is parent to 977 00:52:38.000 --> 00:52:40.980 parent. Ginger or others, would you 978 00:52:41.000 --> 00:52:44.980 like to respond to that? GINGER MULLIN: I will ask for 979 00:52:45.000 --> 00:52:47.980 Kerry to join in. I think in this case parent 980 00:52:48.000 --> 00:52:50.980 to parent program is referring to a specific 981 00:52:51.000 --> 00:52:51.980 program, not 982 00:52:52.000 --> 00:52:54.980 the generic concept of parent to parent. In our 983 00:52:55.000 --> 00:52:57.980 scenario, the Department of Public Health put at grant 984 00:52:58.000 --> 00:53:03.970 that was discipline specific 985 00:53:03.990 --> 00:53:04.980 986 00:53:05.000 --> 00:53:07.980 and we wanted folks that offered parent to parent 987 00:53:08.000 --> 00:53:12.980 support in the domain of deaf and hard of hearing. Carrie D 988 00:53:13.000 --> 00:53:15.980 want to add to that? Am I missing something? I 989 00:53:16.000 --> 00:53:20.980 think I am missing a nuance of the questions of Carrie if 990 00:53:21.000 --> 00:53:22.980 you could help me... CARRIE BALIAN: 991 00:53:23.000 --> 00:53:25.980 I agree, I believe the question is referring to a 992 00:53:26.000 --> 00:53:28.980 specific brand of family support parent to parent 993 00:53:29.000 --> 00:53:34.970 programs, and so you are right 994 00:53:34.990 --> 00:53:37.980 995 00:53:38.000 --> 00:53:40.980 . We don't have that program in 996 00:53:41.000 --> 00:53:42.980 our state. Sometimes with those parent 997 00:53:43.000 --> 00:53:45.980 to parent programs, they are not discipline specific. So 998 00:53:46.000 --> 00:53:49.980 with that, we are fortunate enough to really understand 999 00:53:50.000 --> 00:53:53.980 the EHDI community and focus on the needs they have as a 1000 00:53:54.000 --> 00:53:54.980 program. 1001 00:53:55.000 --> 00:53:57.980 And again focus specifically on the needs with families 1002 00:53:58.000 --> 00:54:01.980 with children who are deaf and hard of hearing. So there 1003 00:54:02.000 --> 00:54:03.980 is the benefit 1004 00:54:04.000 --> 00:54:06.980 to focus and partner with discipline specific. Now with 1005 00:54:07.000 --> 00:54:09.980 that being said, I know there are other family based 1006 00:54:10.000 --> 00:54:13.980 programs who partner with their public health systems 1007 00:54:14.000 --> 00:54:16.980 and maybe there are more than one family-based 1008 00:54:17.000 --> 00:54:22.980 partnerships partnering 1009 00:54:23.000 --> 00:54:25.980 with that department. So that could be something of 1010 00:54:26.000 --> 00:54:28.980 a consideration. The only thing I would say is 1011 00:54:29.000 --> 00:54:30.980 that 1012 00:54:31.000 --> 00:54:33.980 sometimes when you have multiple partnerships it gets 1013 00:54:34.000 --> 00:54:37.980 to be difficult including all of those in the process 1014 00:54:38.000 --> 00:54:40.980 and making sure that everyone is working towards 1015 00:54:41.000 --> 00:54:41.980 the same goal. 1016 00:54:42.000 --> 00:54:45.980 So there are pros and cons. Sharing the work, but then 1017 00:54:46.000 --> 00:54:50.980 having more 1018 00:54:51.000 --> 00:54:54.980 chefs in the kitchen I guess for lack of better phrasing 1019 00:54:55.000 --> 00:55:00.970 at this time. WILLIAM EISERMAN: 1020 00:55:00.990 --> 00:55:01.980 1021 00:55:02.000 --> 00:55:05.980 Here is another related question – do you know of any 1022 00:55:06.000 --> 00:55:08.980 other states who have used your states protocols or 1023 00:55:09.000 --> 00:55:14.970 procedures as a template for their programs? GINGER MULLIN: 1024 00:55:14.990 --> 00:55:17.980 1025 00:55:18.000 --> 00:55:21.980 We just have the honor of being able to share this 1026 00:55:22.000 --> 00:55:24.980 information at the national leadership conference in New 1027 00:55:25.000 --> 00:55:30.970 York State last month 1028 00:55:30.990 --> 00:55:32.980 1029 00:55:33.000 --> 00:55:35.980 . All of our information is out 1030 00:55:36.000 --> 00:55:38.980 there and we will readily share it. Of course 1031 00:55:39.000 --> 00:55:41.980 everything is done with federal money so there is 1032 00:55:42.000 --> 00:55:44.980 absolutely no proprietary. We will give you anything we 1033 00:55:45.000 --> 00:55:47.980 have. We think that some folks are 1034 00:55:48.000 --> 00:55:50.980 starting to take some of the information we have shared. 1035 00:55:51.000 --> 00:55:54.980 We have tried to be transparent on the calls we 1036 00:55:55.000 --> 00:55:59.980 have been on, so we are not aware of folks in full swing 1037 00:56:00.000 --> 00:56:03.980 of using these ideas, but we will share anything with you. 1038 00:56:04.000 --> 00:56:05.980 We believe in share seamlessly, steel 1039 00:56:06.000 --> 00:56:08.980 shamelessly. So get a hold of any of us. 1040 00:56:09.000 --> 00:56:12.980 WILLIAM EISERMAN: Using about the expanded focus of EHDI to 1041 00:56:13.000 --> 00:56:18.970 include 1042 00:56:18.990 --> 00:56:19.980 1043 00:56:20.000 --> 00:56:23.980 children up to three years of age. How do you envision 1044 00:56:24.000 --> 00:56:26.980 parents of children with late onset or later identified 1045 00:56:27.000 --> 00:56:29.980 hearing loss receiving direct referrals to family supports 1046 00:56:30.000 --> 00:56:32.980 and if that happens, will they be connected to families 1047 00:56:33.000 --> 00:56:35.980 of other children with late onset or identified hearing 1048 00:56:36.000 --> 00:56:41.970 loss? GINGER MULLIN: 1049 00:56:41.990 --> 00:56:44.980 1050 00:56:45.000 --> 00:56:48.980 I can take the first part of it. Illinois state law says 1051 00:56:49.000 --> 00:56:51.980 that any newly identified hearing loss through the age 1052 00:56:52.000 --> 00:56:55.980 of six has to be reported to the Department of Public 1053 00:56:56.000 --> 00:56:59.980 Health so we will follow our referral process that is laid 1054 00:57:00.000 --> 00:57:03.980 out as a child's age dictates. Obviously we will 1055 00:57:04.000 --> 00:57:07.980 not refer to part C for a four-year-old but we will 1056 00:57:08.000 --> 00:57:10.980 make all the other referrals as needed. If they come 1057 00:57:11.000 --> 00:57:13.980 through the EHDI system, those are folks that carry 1058 00:57:14.000 --> 00:57:17.980 will work with. As we said, if there are 1059 00:57:18.000 --> 00:57:20.980 referrals at, or families need services later on in 1060 00:57:21.000 --> 00:57:24.980 life, that is where Illinois Hands and Voices – they serve 1061 00:57:25.000 --> 00:57:26.980 all the kids through graduation are even beyond. 1062 00:57:27.000 --> 00:57:30.980 They do some wonderful fundraising to be able 1063 00:57:31.000 --> 00:57:33.980 to address those specific concerns. We also have a 1064 00:57:34.000 --> 00:57:36.980 close connection to the Illinois school for the depth 1065 00:57:37.000 --> 00:57:40.980 that is able to address a lot of concerns with their 1066 00:57:41.000 --> 00:57:42.980 resources. Carried you want to comment? 1067 00:57:43.000 --> 00:57:43.980 CARRIE BALIAN: 1068 00:57:44.000 --> 00:57:46.980 We have had multiple opportunities where there was 1069 00:57:47.000 --> 00:57:52.980 a late onset where that EHDI team 1070 00:57:53.000 --> 00:57:56.980 it had been shared with them or the family came to us 1071 00:57:57.000 --> 00:58:00.980 first and we are able to share that information back 1072 00:58:01.000 --> 00:58:06.970 with EHDI so they could reach out to that audio adult 1073 00:58:06.990 --> 00:58:14.980 1074 00:58:15.000 --> 00:58:17.980 -- audiologist and request that report. So it has worked 1075 00:58:18.000 --> 00:58:20.980 both ways. We do serve those families as 1076 00:58:21.000 --> 00:58:24.980 far as connecting them with the parents who also has a 1077 00:58:25.000 --> 00:58:27.980 late onset. We are able to do that as 1078 00:58:28.000 --> 00:58:32.980 well, that is just one of the things you look for when 1079 00:58:33.000 --> 00:58:35.980 hiring for your team of parents. WILLIAM EISERMAN: 1080 00:58:36.000 --> 00:58:39.980 One final question and then we will wrap it up. Before 1081 00:58:40.000 --> 00:58:43.980 you all go, there will be a short evaluation, a link to 1082 00:58:44.000 --> 00:58:45.980 an evaluation and a certificate generator that 1083 00:58:46.000 --> 00:58:51.970 will appear in the chat field in a moment here if not 1084 00:58:51.990 --> 00:58:53.980 1085 00:58:54.000 --> 00:58:54.980 CARRIE BALIAN: 1086 00:58:55.000 --> 00:58:59.980 This is Carrie. 1087 00:59:00.000 --> 00:59:04.980 As part of my intake process I do ask the parent. So it is 1088 00:59:05.000 --> 00:59:07.980 parent reported. On my end. If there are any 1089 00:59:08.000 --> 00:59:10.980 additional needs aside from the hearing loss. GINGER 1090 00:59:11.000 --> 00:59:13.980 MULLIN: This is Ginger. We, as part 1091 00:59:14.000 --> 00:59:15.980 of our reprint of our website 1092 00:59:16.000 --> 00:59:19.980 we are trying to do a lot more with death and 1093 00:59:20.000 --> 00:59:20.980 death/blind. -- D/Deaf and 1094 00:59:21.000 --> 00:59:26.970 d/Deaf/blind. 1095 00:59:26.990 --> 00:59:28.980 1096 00:59:29.000 --> 00:59:33.980 We feel that we need to be that Lorax who speaks for the 1097 00:59:34.000 --> 00:59:34.980 trees for low incidence disabilities. 1098 00:59:35.000 --> 00:59:39.980 I hope that is an area of expansion that you will see 1099 00:59:40.000 --> 00:59:41.980 from us as we get input. 1100 00:59:42.000 --> 00:59:44.980 Illinois in their part to seat system have 1101 00:59:45.000 --> 00:59:49.980 developmental therapists specific to hearing loss 1102 00:59:50.000 --> 00:59:51.980 and specific 1103 00:59:52.000 --> 00:59:52.980 to hearing -- 1104 00:59:53.000 --> 00:59:55.980 specific to 1105 00:59:56.000 --> 00:59:58.980 vision issues. We want to continue to 1106 00:59:59.000 --> 01:00:00.980 partner with those, and Andrea, 1107 01:00:01.000 --> 01:00:03.980 our Executive Director in another phase of her life, 1108 01:00:04.000 --> 01:00:06.980 is a lot to do early intervention training 1109 01:00:07.000 --> 01:00:08.980 sessions. 1110 01:00:09.000 --> 01:00:12.980 Where they have a two day conference, every June. If 1111 01:00:13.000 --> 01:00:14.980 you are interested in that 1112 01:00:15.000 --> 01:00:15.980 audio (Audio interference) please 1113 01:00:16.000 --> 01:00:16.980 contact 1114 01:00:17.000 --> 01:00:18.980 Andrea Marwah 1115 01:00:19.000 --> 01:00:22.980 or one of us, and we will connect you with that. 1116 01:00:23.000 --> 01:00:24.980 As far as 1117 01:00:25.000 --> 01:00:28.980 other disabilities, we do rely on our part C to help us 1118 01:00:29.000 --> 01:00:33.980 address any **Audio lost** 1119 01:00:34.000 --> 01:00:38.980 WILLIAM EISERMAN: 1120 01:00:39.000 --> 01:00:42.980 It sounds like Ginger got cut off. Can you still hear 1121 01:00:43.000 --> 01:00:43.980 me? SPEAKER: I sure can. 1122 01:00:44.000 --> 01:00:49.970 WILLIAM EISERMAN: 1123 01:00:49.990 --> 01:00:50.980 1124 01:00:51.000 --> 01:00:54.980 This is will. We will wrap it up with a 1125 01:00:55.000 --> 01:00:57.980 giant thank you to our four presenters, Carrie, Ginger, 1126 01:00:58.000 --> 01:01:00.980 Debbie, and Kate. Another shot out of gratitude 1127 01:01:01.000 --> 01:01:03.980 to our captioners and interpreters today. And to 1128 01:01:04.000 --> 01:01:05.980 all of you for your participation today. 1129 01:01:06.000 --> 01:01:09.980 Ginger's email is in the chat 1130 01:01:10.000 --> 01:01:14.980 , if you need to contact any of the presenters that is a 1131 01:01:15.000 --> 01:01:16.980 great way to do it. 1132 01:01:17.000 --> 01:01:19.980 There is also the link to the evaluation and 1133 01:01:20.000 --> 01:01:22.980 certificate generator. You will find there to click 1134 01:01:23.000 --> 01:01:24.980 on. Remember, this webinar has 1135 01:01:25.000 --> 01:01:26.980 been recorded. And will be on 1136 01:01:27.000 --> 01:01:29.980 infanthearing.org in the next couple of days. 1137 01:01:30.000 --> 01:01:31.980 So go there, share it with others. 1138 01:01:32.000 --> 01:01:34.980 If it is of relevance to them. 1139 01:01:35.000 --> 01:01:37.980 Thank you everybody. I hope you have a wonderful 1140 01:01:38.000 --> 01:01:39.980 day, and enjoy the fall! 1141 01:01:40.000 --> 01:01:44.538 Live Captioning by Ai-Media