1 00:00:05,240 --> 00:00:08,040 WELCOME TO THIS MEETING OF THE 2 00:00:08,040 --> 00:00:10,120 INTERAGENCY AUTISM COORDINATING 3 00:00:10,120 --> 00:00:11,480 COMMITTEE STRATEGIC PLAN WORKING 4 00:00:11,480 --> 00:00:12,800 GROUP. 5 00:00:12,800 --> 00:00:14,000 WE'RE WELCOMING YOU BACK FOR A 6 00:00:14,000 --> 00:00:17,040 SECOND DAY OF THIS MEETING. 7 00:00:17,040 --> 00:00:19,000 WELCOME TO OUR ONLINE AUDIENCE, 8 00:00:19,000 --> 00:00:20,880 WHO MAY BE VIEWING THROUGH NIH 9 00:00:20,880 --> 00:00:22,600 VIDEOCAST, AND TO MEMBERS OF THE 10 00:00:22,600 --> 00:00:24,160 COMMITTEE AND ALTERNATES WHO ARE 11 00:00:24,160 --> 00:00:25,920 SERVING WITH THE COMMITTEE 12 00:00:25,920 --> 00:00:26,880 TODAY. 13 00:00:26,880 --> 00:00:28,640 WE WENT THROUGH A LIST OF PEOPLE 14 00:00:28,640 --> 00:00:29,840 WHO WERE PRESENT YESTERDAY. 15 00:00:29,840 --> 00:00:33,560 WE'RE NOT GOING TO DO THAT AGAIN 16 00:00:33,560 --> 00:00:35,000 TODAY, BUT THE SLIDE SET WILL BE 17 00:00:35,000 --> 00:00:36,200 POSTED THAT WILL SHOW THAT, AND 18 00:00:36,200 --> 00:00:37,720 YOU WILL SEE PEOPLE AS THEY COME 19 00:00:37,720 --> 00:00:42,760 IN AND OUT, AS THEY COMMENT ON 20 00:00:42,760 --> 00:00:47,360 VARIOUS DISCUSSION TOPICS TODAY. 21 00:00:47,360 --> 00:00:50,080 SO IN TERMS OF THE HOUSEKEEPING 22 00:00:50,080 --> 00:00:52,040 ITEMS, AGAIN, AS A REMINDER, IN 23 00:00:52,040 --> 00:00:53,240 CASE THERE'S ANYBODY HERE WHO 24 00:00:53,240 --> 00:00:56,320 WASN'T HERE YESTERDAY, WE WILL 25 00:00:56,320 --> 00:00:58,040 HAVE A PERSON WHO IS DESIGNATED 26 00:00:58,040 --> 00:01:01,760 FROM OUR OFFICE, STEVEN ISAAC 27 00:01:01,760 --> 00:01:02,760 ISAACSON, WHO WILL BE ABLE TO 28 00:01:02,760 --> 00:01:03,760 READ COMMENTS FOR ANYBODY WHO 29 00:01:03,760 --> 00:01:05,280 WANTS TO SUBMIT THEIR COMMENTS 30 00:01:05,280 --> 00:01:07,920 IN WRITING, AND HE HAS HIS NAME 31 00:01:07,920 --> 00:01:09,560 LABELED AS "SEND COMMENTS HERE" 32 00:01:09,560 --> 00:01:10,840 IN THE ZOOM CHAT SO YOU CAN SEND 33 00:01:10,840 --> 00:01:11,960 YOUR COMMENTS TO HIM AND HE'LL 34 00:01:11,960 --> 00:01:15,040 BE HAPPY TO READ THEM AND 35 00:01:15,040 --> 00:01:16,560 EVERYONE, YOU CAN KEEP YOUR 36 00:01:16,560 --> 00:01:18,200 CAMERAS OFF UNLESS YOU'RE 37 00:01:18,200 --> 00:01:19,280 SPEAKING, AND IF YOU WANT TO 38 00:01:19,280 --> 00:01:20,920 SPEAK AND YOU DON'T WANT TO TURN 39 00:01:20,920 --> 00:01:22,760 YOUR CAMERA ON, THAT'S FINE TOO. 40 00:01:22,760 --> 00:01:24,960 WE DON'T WANT ANYBODY TO GET 41 00:01:24,960 --> 00:01:27,480 CAMERA FATIGUE. 42 00:01:27,480 --> 00:01:29,320 AND WE WILL BE GOING THROUGH 43 00:01:29,320 --> 00:01:31,200 TODAY'S MEETING AGENDA. 44 00:01:31,200 --> 00:01:32,840 I PUBLISHED A NEW MEETING AGENDA 45 00:01:32,840 --> 00:01:35,760 THAT IS ONLINE ON THE IACC 46 00:01:35,760 --> 00:01:37,000 WEBSITE TO ADJUST FOR SOME 47 00:01:37,000 --> 00:01:40,400 THINGS THAT WE CHANGED AS OF THE 48 00:01:40,400 --> 00:01:41,720 MEETING YESTERDAY. 49 00:01:41,720 --> 00:01:43,600 SO WANTED TO MAKE SURE THAT THAT 50 00:01:43,600 --> 00:01:44,640 IS ALL WORKED OUT. 51 00:01:44,640 --> 00:01:46,520 AND I WORKED IN JUST ONE BREAK 52 00:01:46,520 --> 00:01:47,840 FOR TODAY BECAUSE YESTERDAY IT 53 00:01:47,840 --> 00:01:51,560 SEEMED LIKE ONE BREAK WAS ENOUGH 54 00:01:51,560 --> 00:01:52,520 SO IF YOU WANT TO FOLLOW ALONG 55 00:01:52,520 --> 00:01:54,400 WITH THE AGENDA, CHECK THE LINK 56 00:01:54,400 --> 00:01:56,120 ON THE IACC WEBSITE FOR THIS 57 00:01:56,120 --> 00:01:57,320 MEETING. 58 00:01:57,320 --> 00:02:00,400 BUT AGAIN, I'LL GO OVER A RECAP 59 00:02:00,400 --> 00:02:02,040 OF YESTERDAY'S MEETING. 60 00:02:02,040 --> 00:02:03,480 SO WE HAD A GREAT MEETING 61 00:02:03,480 --> 00:02:04,560 YESTERDAY, LOTS OF WONDERFUL 62 00:02:04,560 --> 00:02:06,320 FEEDBACK SHARED BY OUR MEMBERS 63 00:02:06,320 --> 00:02:07,760 ABOUT DIFFERENT SECTIONS OF THE 64 00:02:07,760 --> 00:02:10,240 STRATEGIC PLAN. 65 00:02:10,240 --> 00:02:12,000 SO WE WENT OVER QUESTIONS ONE, 66 00:02:12,000 --> 00:02:14,280 TWO, THREE AND FOUR OF THE IACC 67 00:02:14,280 --> 00:02:15,840 STRATEGIC PLAN AND OUT OF THE 68 00:02:15,840 --> 00:02:16,920 SEVEN QUESTION AREAS PLUS THERE 69 00:02:16,920 --> 00:02:18,120 ARE SOME OTHER AREAS WE'RE GOING 70 00:02:18,120 --> 00:02:21,280 TO TALK ABOUT TODAY. 71 00:02:21,280 --> 00:02:23,840 WE DISCUSSED THE PURPOSE OF THE 72 00:02:23,840 --> 00:02:25,240 IACC STRATEGIC PLAN, WE REVIEWED 73 00:02:25,240 --> 00:02:27,000 THE PROCESS AND THE TIMELINE, 74 00:02:27,000 --> 00:02:28,720 AND WE DID COLLECT THAT FEEDBACK 75 00:02:28,720 --> 00:02:30,080 FROM YOU ALL, WHICH WAS SO 76 00:02:30,080 --> 00:02:32,040 HELPFUL. 77 00:02:32,040 --> 00:02:34,880 SO TODAY, WHAT HAS CHANGED ON 78 00:02:34,880 --> 00:02:36,160 THE AGENDA IS WE'RE GOING TO GO 79 00:02:36,160 --> 00:02:39,160 THROUGH QUESTIONS 5, 6 AND 7, 80 00:02:39,160 --> 00:02:41,840 AND THEN WITH THE CROSS-CUTTING 81 00:02:41,840 --> 00:02:43,560 OBJECTIVES, SEX/GENDER AND 82 00:02:43,560 --> 00:02:44,920 DISPARITIES, WE'VE ADDED MORE 83 00:02:44,920 --> 00:02:46,360 TIME TO BE ABLE TO TALK ABOUT 84 00:02:46,360 --> 00:02:48,400 THOSE IN A LITTLE MORE DETAIL, 85 00:02:48,400 --> 00:02:50,160 AND WE HAVE COVID-19, AND THEN 86 00:02:50,160 --> 00:02:54,080 WE WILL CLOSE OUT TODAY'S 87 00:02:54,080 --> 00:02:55,240 MEETING. 88 00:02:55,240 --> 00:02:56,960 SO WITH THAT, I'M READY TO JUMP 89 00:02:56,960 --> 00:02:58,160 RIGHT INTO QUESTION 5, UNLESS 90 00:02:58,160 --> 00:02:59,360 THERE ARE ANY QUESTIONS FROM THE 91 00:02:59,360 --> 00:03:02,080 COMMITTEE. 92 00:03:02,080 --> 00:03:02,680 ALL RIGHT. 93 00:03:02,680 --> 00:03:03,960 SO WE'RE GOING TO START WITH 94 00:03:03,960 --> 00:03:05,280 QUESTION 5, WHICH IS ON SERVICES 95 00:03:05,280 --> 00:03:07,920 AND SUPPORTS. 96 00:03:07,920 --> 00:03:10,520 SO THE PROPOSED QUESTION 5 TEXT 97 00:03:10,520 --> 00:03:11,880 IS, WHAT SERVICES AND SUPPORTS 98 00:03:11,880 --> 00:03:13,760 ARE NEEDED TO MAXIMIZE HEALTH 99 00:03:13,760 --> 00:03:15,200 AND WELL-BEING? 100 00:03:15,200 --> 00:03:16,560 AND WE CHANGED THAT OVER FROM 101 00:03:16,560 --> 00:03:18,200 QUALITY OF LIFE, BECAUSE WE 102 00:03:18,200 --> 00:03:19,680 HEARD YESTERDAY THAT THAT WOULD 103 00:03:19,680 --> 00:03:21,440 MAYBE BE A BETTER WAY TO WORD 104 00:03:21,440 --> 00:03:23,200 THAT. 105 00:03:23,200 --> 00:03:27,040 SO THAT IS HOW WE HAVE IT NOW, 106 00:03:27,040 --> 00:03:28,240 BUT YOU'LL ALSO HAVE AN 107 00:03:28,240 --> 00:03:29,040 OPPORTUNITY ON THE SURVEY AFTER 108 00:03:29,040 --> 00:03:30,200 THE MEETING IF YOU HAVE ANY 109 00:03:30,200 --> 00:03:31,400 OTHER SUGGESTIONS ABOUT THE 110 00:03:31,400 --> 00:03:32,720 WORDING OF THE QUESTION. 111 00:03:32,720 --> 00:03:33,800 BUT WE'RE TRYING TO KEEP THEM 112 00:03:33,800 --> 00:03:40,720 SHORT AND READABLE. 113 00:03:40,720 --> 00:03:43,120 SO THE TOPICS INCLUDE EDUCATION, 114 00:03:43,120 --> 00:03:44,960 HEALTHCARE, CHILD SAFETY, 115 00:03:44,960 --> 00:03:47,480 INCLUDING ISSUES LIKE WANDERING, 116 00:03:47,480 --> 00:03:49,000 AND WE CAN ALSO ADD SOMETHING 117 00:03:49,000 --> 00:03:50,240 ABOUT WATER SAFETY AS I KNOW 118 00:03:50,240 --> 00:03:52,320 THAT'S AN ISSUE CONGRESS IS 119 00:03:52,320 --> 00:03:54,280 INTERESTED IN, AND I KNOW SCOTT 120 00:03:54,280 --> 00:03:55,600 ROBERTSON AND SOME OTHERS ON THE 121 00:03:55,600 --> 00:03:56,400 COMMITTEE HAVE MENTIONED THIS 122 00:03:56,400 --> 00:03:57,880 BEFORE AS WELL. 123 00:03:57,880 --> 00:04:04,440 SYSTEMS NAVIGATION, ENSURING 124 00:04:04,440 --> 00:04:05,880 INDIVIDUALIZATION, CHOICE, 125 00:04:05,880 --> 00:04:07,480 PERSON-CENTERED PLANNING AND 126 00:04:07,480 --> 00:04:08,800 SELF-DIRECTION. 127 00:04:08,800 --> 00:04:10,680 CAREGIVER AND FAMILY SUPPORTS. 128 00:04:10,680 --> 00:04:11,880 OUTCOMES, QUALITY OF SERVICES 129 00:04:11,880 --> 00:04:14,600 AND SERVICES NEEDS. 130 00:04:14,600 --> 00:04:15,960 THE TRAINING AND DEVELOPMENT OF 131 00:04:15,960 --> 00:04:18,640 THE SERVICES WORKFORCE. 132 00:04:18,640 --> 00:04:21,600 AND COORDINATION OF SERVICES. 133 00:04:21,600 --> 00:04:22,960 SO THAT'S A GENERAL OVERVIEW OF 134 00:04:22,960 --> 00:04:24,680 WHAT'S IN QUESTION 5. 135 00:04:24,680 --> 00:04:26,560 AND SO I'M GOING TO ASK THE SAME 136 00:04:26,560 --> 00:04:27,760 DISCUSSION QUESTIONS I'VE BEEN 137 00:04:27,760 --> 00:04:30,160 USING THROUGHOUT THIS MEETING, 138 00:04:30,160 --> 00:04:31,240 THROUGHOUT THE MEETING 139 00:04:31,240 --> 00:04:32,560 YESTERDAY, AND WE'LL USE THEM 140 00:04:32,560 --> 00:04:33,000 TODAY. 141 00:04:33,000 --> 00:04:34,520 ARE THERE ANY OTHER IMPORTANT 142 00:04:34,520 --> 00:04:35,720 TOPICS OR POINTS THAT WE NEED TO 143 00:04:35,720 --> 00:04:37,600 INCLUDE IN QUESTION 5? 144 00:04:37,600 --> 00:04:39,080 AND HAVE THERE BEEN ANY 145 00:04:39,080 --> 00:04:41,720 SIGNIFICANT RECENT CHANGES, 146 00:04:41,720 --> 00:04:43,040 WHETHER IT'S IN POLICY, IN 147 00:04:43,040 --> 00:04:45,000 RESEARCH OR SERVICES, THAT COULD 148 00:04:45,000 --> 00:04:47,880 IMPACT THE DIRECTION THAT WE 149 00:04:47,880 --> 00:04:49,160 WANT THE STRATEGIC PLAN TO TAKE 150 00:04:49,160 --> 00:04:50,360 IN THIS AREA. 151 00:04:50,360 --> 00:04:53,760 SO I HAVE A QUESTION OR I HAVE A 152 00:04:53,760 --> 00:04:56,520 COMMENT FROM IVANOVA SMITH. 153 00:04:56,520 --> 00:04:59,120 >> HELLO, THIS IS IVANOVA SMITH. 154 00:04:59,120 --> 00:05:02,960 MY COMMENT IS, I THINK WE SHOULD 155 00:05:02,960 --> 00:05:05,240 ADD TRANSITION TO ADULTHOOD, 156 00:05:05,240 --> 00:05:06,360 BECAUSE IT DEFINITELY SUPPORTS 157 00:05:06,360 --> 00:05:07,880 THE SERVICES THAT ARE NEEDED TO 158 00:05:07,880 --> 00:05:10,840 TRANSITION TO ADULTHOOD AND 159 00:05:10,840 --> 00:05:14,680 HELPING A PERSON BE SUPPORTED IN 160 00:05:14,680 --> 00:05:15,400 DOING ADULT ACTIVITIES. 161 00:05:15,400 --> 00:05:15,720 THANK YOU. 162 00:05:15,720 --> 00:05:18,720 >> THANK YOU IVANOVA. 163 00:05:18,720 --> 00:05:19,920 TRANSITION TO ADULTHOOD IS 164 00:05:19,920 --> 00:05:22,640 ACTUALLY THE FIRST ITEM IN 165 00:05:22,640 --> 00:05:24,160 QUESTION 6, WHICH IS ALL ABOUT 166 00:05:24,160 --> 00:05:26,160 ADULTHOOD AND SERVING THROUGHOUT 167 00:05:26,160 --> 00:05:26,800 THE LIFESPAN. 168 00:05:26,800 --> 00:05:27,560 >> OH, I'M SORRY. 169 00:05:27,560 --> 00:05:28,760 >> THAT'S NOT A PROBLEM AT ALL. 170 00:05:28,760 --> 00:05:30,080 SO WE WILL DEFINITELY COVER THAT 171 00:05:30,080 --> 00:05:32,720 IN QUESTION 6. 172 00:05:32,720 --> 00:05:39,400 VERY IMPORTANT TOPIC. 173 00:05:39,400 --> 00:05:43,000 JULIE LA TAYLOR. 174 00:05:43,000 --> 00:05:45,720 >> IF WE WANT TO PUT THAT IN 175 00:05:45,720 --> 00:05:46,680 QUESTION 5 OR A PIECE OF THAT, I 176 00:05:46,680 --> 00:05:48,320 THINK SORT OF THE CONTINUITY OF 177 00:05:48,320 --> 00:05:49,680 SERVICES BETWEEN SORT OF 178 00:05:49,680 --> 00:05:51,720 SCHOOL-BASED SERVICES AND ADULT 179 00:05:51,720 --> 00:05:53,120 SERVICES IS A REAL CHALLENGE, 180 00:05:53,120 --> 00:05:55,000 AND MAYBE THAT FITS BEST IN ONLY 181 00:05:55,000 --> 00:05:58,160 QUESTION 6, BUT IT KIND OF IS 182 00:05:58,160 --> 00:06:01,240 ALMOST A -- COORDINATION OF 183 00:06:01,240 --> 00:06:03,440 SERVICES PIECE TO WORK TOWARD 184 00:06:03,440 --> 00:06:04,400 BETTER CONTINUITY THERE THAN 185 00:06:04,400 --> 00:06:06,080 WHAT WE TYPICALLY SEE. 186 00:06:06,080 --> 00:06:07,160 >> OKAY. 187 00:06:07,160 --> 00:06:11,520 THANK YOU. 188 00:06:11,520 --> 00:06:12,840 JALYNN DA, DID YOU HAVE A 189 00:06:12,840 --> 00:06:13,560 COMMENT? 190 00:06:13,560 --> 00:06:16,800 I SAW YOU TURN ON YOUR CAMERA. 191 00:06:16,800 --> 00:06:18,960 >> YES. 192 00:06:18,960 --> 00:06:20,160 THERE'S SOMETHING WE HIT ON A 193 00:06:20,160 --> 00:06:21,800 LITTLE BIT YESTERDAY ABOUT THE 194 00:06:21,800 --> 00:06:23,480 NUMBER OF PEOPLE THAT ARE BEING 195 00:06:23,480 --> 00:06:27,400 DIAGNOSED AS ADULTS. 196 00:06:27,400 --> 00:06:29,240 AND HOW DO WE PUT THAT IN HERE 197 00:06:29,240 --> 00:06:32,760 AND MAYBE IN TWO PLACES? 198 00:06:32,760 --> 00:06:35,280 BECAUSE THE THING I KEEP HEARING 199 00:06:35,280 --> 00:06:37,360 IS, NOW THAT I HAVE A DIAGNOSIS 200 00:06:37,360 --> 00:06:41,040 AND I KNOW THAT I NEED SOME 201 00:06:41,040 --> 00:06:42,280 ASSISTANCE, HOW DO I GET THAT IF 202 00:06:42,280 --> 00:06:44,680 I'VE NOT BEEN ABLE TO HOLD A JOB 203 00:06:44,680 --> 00:06:45,640 BECAUSE OF SOME OF THE THINGS 204 00:06:45,640 --> 00:06:47,280 I'VE DISCOVERED ABOUT MYSELF 205 00:06:47,280 --> 00:06:49,840 THAT HAS KEPT ME FROM 206 00:06:49,840 --> 00:06:52,240 EMPLOYMENT, HOW DO I ACCESS 207 00:06:52,240 --> 00:06:55,840 THOSE THINGS SO I CAN BE MORE 208 00:06:55,840 --> 00:06:58,040 PRODUCTIVE, SO I CAN LEARN MORE 209 00:06:58,040 --> 00:07:00,320 ABOUT MYSELF? 210 00:07:00,320 --> 00:07:02,720 AND THE TERM YESTERDAY, TALKING 211 00:07:02,720 --> 00:07:04,160 ABOUT THINGS YESTERDAY ABOUT 212 00:07:04,160 --> 00:07:13,200 SERVICES FOR ADULTS, SOMEBODY -- 213 00:07:13,200 --> 00:07:14,400 SUPPORT NEEDS DOESN'T MEAN NO 214 00:07:14,400 --> 00:07:15,600 SUPPORT NEEDS, AND I THINK 215 00:07:15,600 --> 00:07:17,920 THAT'S SOMETHING WE NEED TO TAKE 216 00:07:17,920 --> 00:07:19,040 INTO CONSIDERATION VERY 217 00:07:19,040 --> 00:07:20,320 SERIOUSLY, IN LOOKING AT WHAT 218 00:07:20,320 --> 00:07:23,640 THOSE SERVICES AND SUPPORTS ARE. 219 00:07:23,640 --> 00:07:26,800 WHETHER IT COMES IN NUMBER 5 OR 220 00:07:26,800 --> 00:07:29,720 IT COMES IN NUMBER 6 OR BOTH. 221 00:07:29,720 --> 00:07:31,800 >> THANK YOU. 222 00:07:31,800 --> 00:07:35,880 SO WITH ADULT SERVICES RELATED 223 00:07:35,880 --> 00:07:37,280 TO DIAGNOSIS AND POST DIAGNOSIS, 224 00:07:37,280 --> 00:07:39,240 WE TO HAVE THAT IN QUESTION 6, 225 00:07:39,240 --> 00:07:40,920 BUT SOMETHING THAT YOU JUST 226 00:07:40,920 --> 00:07:42,760 MENTIONED ABOUT DESCRIBING THE 227 00:07:42,760 --> 00:07:45,600 RANGE OF WHAT CAN BE COVERED 228 00:07:45,600 --> 00:07:47,920 WITH HIGH SUPPORT NEEDS VERSUS 229 00:07:47,920 --> 00:07:49,400 LOW SUPPORT NEEDS, YOU KNOW, 230 00:07:49,400 --> 00:07:50,760 WHICH NONE OF THIS TERMINOLOGY 231 00:07:50,760 --> 00:07:53,600 IS PERFECT, BUT WE DEFINITELY 232 00:07:53,600 --> 00:07:54,880 RECOGNIZED FROM PREVIOUS 233 00:07:54,880 --> 00:08:00,160 DISCUSSIONS WITH THE COMMITTEE 234 00:08:00,160 --> 00:08:01,560 THAT INTELLECTUAL DISABILITY 235 00:08:01,560 --> 00:08:02,800 LANGUAGE AND COMMUNICATION 236 00:08:02,800 --> 00:08:03,960 DISABILITIES ARE ONE FORM, BUT 237 00:08:03,960 --> 00:08:06,520 THERE ARE MENTAL HEALTH 238 00:08:06,520 --> 00:08:07,120 CO-OCCURRING CONDITIONS AND 239 00:08:07,120 --> 00:08:09,000 OTHER KINDS OF CONDITIONS AND 240 00:08:09,000 --> 00:08:10,960 DISABILITIES THAT CAN LEAD TO 241 00:08:10,960 --> 00:08:12,280 HAVING HIGHER SUPPORT NEEDS. 242 00:08:12,280 --> 00:08:15,920 IT'S NOT JUST ONE SPECIFIC 243 00:08:15,920 --> 00:08:17,640 DEFINITION. 244 00:08:17,640 --> 00:08:19,400 SO I THINK QUESTION 5 MIGHT BE A 245 00:08:19,400 --> 00:08:21,680 GOOD PLACE TO DESCRIBE THAT AS A 246 00:08:21,680 --> 00:08:23,440 PREAMBLE TO GOING INTO WHAT THE 247 00:08:23,440 --> 00:08:26,840 DIFFERENT SUPPORTS ARE. 248 00:08:26,840 --> 00:08:28,240 SO WE CAN TRY TO DO THAT. 249 00:08:28,240 --> 00:08:29,800 >> THANK YOU. 250 00:08:29,800 --> 00:08:33,280 >> SAM? 251 00:08:33,280 --> 00:08:35,360 CRANE? 252 00:08:35,360 --> 00:08:39,520 >> HI, EVERYONE. 253 00:08:39,520 --> 00:08:41,400 THIS IS SORT OF A -- IT SOUNDS 254 00:08:41,400 --> 00:08:42,920 LIKE A MINOR POINT BUT I JUST 255 00:08:42,920 --> 00:08:46,960 WANT TO BE CAREFUL ON A BIT. 256 00:08:46,960 --> 00:08:51,360 RIGHT NOW WE HAVE ON PAGE 4 A 257 00:08:51,360 --> 00:08:52,760 STATEMENT THAT INDIVIDUALS WITH 258 00:08:52,760 --> 00:08:54,960 ASD ARE AT INCREASED RISK FOR 259 00:08:54,960 --> 00:08:56,160 DROWNING, AND I CHECKED THE SITE 260 00:08:56,160 --> 00:08:59,320 FOR IT, I'M NOT SURE THAT IT 261 00:08:59,320 --> 00:09:02,840 NECESSARILY SAYS WHAT WE'RE -- 262 00:09:02,840 --> 00:09:03,840 YOU KNOW, THAT ACTUALLY SUPPORTS 263 00:09:03,840 --> 00:09:05,000 THAT STATEMENT. 264 00:09:05,000 --> 00:09:08,600 I'M NOT AWARE OF ANY REALLY, 265 00:09:08,600 --> 00:09:13,440 REALLY GOOD EVIDENCE, GIVEN THAT 266 00:09:13,440 --> 00:09:17,040 DROWNING IS, I BELIEVE, FOR SOME 267 00:09:17,040 --> 00:09:19,560 AGE GROUPS, THE NUMBER ONE CAUSE 268 00:09:19,560 --> 00:09:21,320 OF UNINTENTIONAL DEATH IN 269 00:09:21,320 --> 00:09:21,920 CHILDREN OVERALL. 270 00:09:21,920 --> 00:09:25,440 YOU KNOW, FREQUENTLY IF WE SEE 271 00:09:25,440 --> 00:09:26,440 FREQUENT DROWNING DEATH IN KIDS 272 00:09:26,440 --> 00:09:27,960 WITH ASD, THAT'S CONSISTENT WITH 273 00:09:27,960 --> 00:09:29,480 THE FACT THAT WE SEE FREQUENT 274 00:09:29,480 --> 00:09:33,560 DROWNING DEATHS IN ALL CHILDREN. 275 00:09:33,560 --> 00:09:35,280 SO I THINK THAT WE COULD SAFELY 276 00:09:35,280 --> 00:09:37,160 SAY THAT, YOU KNOW, THERE IS 277 00:09:37,160 --> 00:09:40,000 CONCERN THAT DROWNING IS A 278 00:09:40,000 --> 00:09:41,200 COMMON CAUSE OF DEATH IN KIDS 279 00:09:41,200 --> 00:09:44,040 WHO WANDER, BUT NOT NECESSARILY 280 00:09:44,040 --> 00:09:50,840 THAT IT LIKE IT'S UNUSUALLY 281 00:09:50,840 --> 00:09:53,360 COMMON FOR KIDS WITH ASD. 282 00:09:53,360 --> 00:09:59,480 IN ADDITION, I THINK I'M 283 00:09:59,480 --> 00:10:04,200 SKEPTICAL OF CITING THE NIA 284 00:10:04,200 --> 00:10:05,400 BECAUSE I'VE HAD SIMILAR 285 00:10:05,400 --> 00:10:06,920 CONCERNS ABOUT THEIR RESEARCH, 286 00:10:06,920 --> 00:10:09,320 WHICH GENERALLY IS VERY FOCUSED 287 00:10:09,320 --> 00:10:12,160 ON REVIEWING NEWS ARTICLES AND 288 00:10:12,160 --> 00:10:14,560 SORT OF ANECDOTAL REPORTS ON 289 00:10:14,560 --> 00:10:18,160 SAFETY ISSUES THAT HAVEN'T -- 290 00:10:18,160 --> 00:10:21,920 AREN'T WHAT I WOULD CONSIDER 291 00:10:21,920 --> 00:10:22,640 PARTICULARLY EPIDEMIOLOGICALLY 292 00:10:22,640 --> 00:10:23,640 SOUND. 293 00:10:23,640 --> 00:10:27,800 I THINK IT IT ACTUALLY HIGHLIGHA 294 00:10:27,800 --> 00:10:31,320 REALLY PRESSING NEED FOR 295 00:10:31,320 --> 00:10:33,920 RIGOROUS EPIDEMIOLOGICAL 296 00:10:33,920 --> 00:10:36,440 RESEARCH ON ACCIDENTAL AND 297 00:10:36,440 --> 00:10:38,000 DROWNING DEATHS IN KIDS WITH 298 00:10:38,000 --> 00:10:39,040 ASD, BECAUSE WE REALLY JUST 299 00:10:39,040 --> 00:10:40,680 DON'T ACTUALLY HAVE VERY GOOD 300 00:10:40,680 --> 00:10:43,440 RESEARCH ON THAT AT ALL. 301 00:10:43,440 --> 00:10:44,080 >> THANK YOU. 302 00:10:44,080 --> 00:10:46,160 I DON'T KNOW IF WE HAVE ANYONE 303 00:10:46,160 --> 00:10:47,240 FROM DEPARTMENT OF JUSTICE ON 304 00:10:47,240 --> 00:10:47,920 THE CALL TODAY. 305 00:10:47,920 --> 00:10:51,000 DO WE HAVE ANYBODY FROM DOJ? 306 00:10:51,000 --> 00:10:53,640 I KNOW IN SPEAKING WITH DOJ THAT 307 00:10:53,640 --> 00:10:55,280 THERE'S A HIGH PROPORTION OF 308 00:10:55,280 --> 00:10:57,240 WANDERING CASES AND IN 309 00:10:57,240 --> 00:10:58,120 ACCIDENTAL DEATH THROUGH 310 00:10:58,120 --> 00:11:02,920 DROWNING, AND THAT MIGHT BE PART 311 00:11:02,920 --> 00:11:04,200 OF WHAT THE WATER SAFETY CONCERN 312 00:11:04,200 --> 00:11:05,880 IS, BUT WE CAN LOOK AT 313 00:11:05,880 --> 00:11:06,320 REFERENCES. 314 00:11:06,320 --> 00:11:12,560 I KNOW THAT DOJ HAS A REPORT BUT 315 00:11:12,560 --> 00:11:14,440 I DON'T KNOW IF IT'S A PUBLIC 316 00:11:14,440 --> 00:11:16,240 REPORT ABOUT THAT, BUT I CAN 317 00:11:16,240 --> 00:11:17,360 CHECK IN WITH OUR CONTACTS 318 00:11:17,360 --> 00:11:17,560 THERE. 319 00:11:17,560 --> 00:11:19,440 >> I THINK IT WOULD BE SAFE TO 320 00:11:19,440 --> 00:11:22,600 SAY THAT OF WANDERING DEATHS, 321 00:11:22,600 --> 00:11:24,240 DROWNING IS A VERY COMMON ONE. 322 00:11:24,240 --> 00:11:26,440 I THINK THAT WOULD BE A VERY 323 00:11:26,440 --> 00:11:31,920 SAFE THING TO SAY. 324 00:11:31,920 --> 00:11:33,640 I JUST DON'T KNOW IF THERE IS 325 00:11:33,640 --> 00:11:34,520 NECESSARILY EVIDENCE THAT KIDS 326 00:11:34,520 --> 00:11:36,720 WITH ASD COMPARED WITH KIDS WHO 327 00:11:36,720 --> 00:11:39,640 DON'T HAVE ASD ARE MORE LIKELY 328 00:11:39,640 --> 00:11:42,720 TO DIE BY DROWNING BECAUSE IT'S 329 00:11:42,720 --> 00:11:47,000 SUCH A -- I CAN GO ON ABOUT 330 00:11:47,000 --> 00:11:51,280 THIS, BUT DROWNING IS JUST A 331 00:11:51,280 --> 00:11:53,320 REALLY, REALLY COMMON CAUSE OF 332 00:11:53,320 --> 00:11:56,400 DEATH IN CHILDREN. 333 00:11:56,400 --> 00:11:56,840 ACROSS THE 334 00:11:56,840 --> 00:11:57,280 COUNTRY. 335 00:11:57,280 --> 00:12:00,000 SO I THINK THAT THAT'S ONE OF MY 336 00:12:00,000 --> 00:12:02,960 CONCERNS, AND I THINK THAT IT'S 337 00:12:02,960 --> 00:12:05,560 IMPORTANT THAT WE DO SOME REALLY 338 00:12:05,560 --> 00:12:11,480 GOOD RESEARCH ON -- THAT 339 00:12:11,480 --> 00:12:16,480 ACTUALLY LIKE COMPARES APPLES 340 00:12:16,480 --> 00:12:23,280 FOR APPLES, KIDS WITH ASD VERSUS 341 00:12:23,280 --> 00:12:24,200 KIDS WITHOUT ASD BECAUSE I 342 00:12:24,200 --> 00:12:25,680 HAVEN'T SEEN A GOOD COMPARISON. 343 00:12:25,680 --> 00:12:29,080 >> DOJ, I DON'T KNOW IF THEY 344 00:12:29,080 --> 00:12:30,200 HAVE ANYTHING THEY'LL BE 345 00:12:30,200 --> 00:12:31,520 PUBLISHING FORMALLY OR CAN CITE 346 00:12:31,520 --> 00:12:33,360 ANY DATA, I KNOW THEY HAVE SOME 347 00:12:33,360 --> 00:12:34,480 BECAUSE THEY'VE SHOWN TO ME, SO 348 00:12:34,480 --> 00:12:35,760 WE CAN LOOK INTO THAT FURTHER, 349 00:12:35,760 --> 00:12:38,760 BUT APPRECIATE THAT COMMENT. 350 00:12:38,760 --> 00:12:40,160 SCOTT, DO YOU HAVE SOME 351 00:12:40,160 --> 00:12:41,480 ADDITIONAL COMMENTS? 352 00:12:41,480 --> 00:12:47,160 >> YEAH, THANKS, SUSAN. 353 00:12:47,160 --> 00:12:48,320 SO I CONCUR THAT FOR THAT AREA 354 00:12:48,320 --> 00:12:49,640 AS FAR AS WATER SAFETY AND SOME 355 00:12:49,640 --> 00:12:51,840 OTHER AREAS, THAT IT'S HELPFUL 356 00:12:51,840 --> 00:12:55,680 TO HAVE HIGHER QUALITY EVIDENCE 357 00:12:55,680 --> 00:12:56,560 AND STATISTICAL SIGNIFICANCE ON 358 00:12:56,560 --> 00:12:57,760 THESE THINGS BECAUSE SOMETIMES 359 00:12:57,760 --> 00:12:59,920 ASSERTIONS ARE MADE IN SOME OF 360 00:12:59,920 --> 00:13:01,480 THESE AREAS ARE AUTISM BASED ON 361 00:13:01,480 --> 00:13:03,120 SMALLER SAMPLE SIZES OR EVIDENCE 362 00:13:03,120 --> 00:13:05,360 THAT MAY NOT BE GENERALIZABLE, 363 00:13:05,360 --> 00:13:08,720 AND IT GOOD TO HAVE SCRUTINY IN 364 00:13:08,720 --> 00:13:09,920 TERMS OF THINKING REALLY 365 00:13:09,920 --> 00:13:11,280 CRITICALLY ABOUT WHAT EVIDENCE 366 00:13:11,280 --> 00:13:13,560 IS PRESENTED BY EITHER JOURNAL 367 00:13:13,560 --> 00:13:16,240 ARTICLES OR REPORTS OUT IN THAT 368 00:13:16,240 --> 00:13:16,560 SPACE. 369 00:13:16,560 --> 00:13:18,000 I JUST WANT TO ADD ON THE WATER 370 00:13:18,000 --> 00:13:19,400 SAFETY BEFORE I JUST HAD A FEW 371 00:13:19,400 --> 00:13:21,040 OTHER ONES JUST TO MENTION 372 00:13:21,040 --> 00:13:21,480 BRIEFLY. 373 00:13:21,480 --> 00:13:23,120 THE WATER SAFETY IS EQUAL ACCESS 374 00:13:23,120 --> 00:13:25,440 TO SWIMMING SKILLS TOO IS 375 00:13:25,440 --> 00:13:27,720 SOMETHING THAT IS COMPLETELY 376 00:13:27,720 --> 00:13:29,440 UNDERSTUDIED IN RESEARCH AS FAR 377 00:13:29,440 --> 00:13:30,560 AS SUPPORTS AND SERVICES. 378 00:13:30,560 --> 00:13:32,440 I GREW UP ON A LAKE. 379 00:13:32,440 --> 00:13:35,280 MY PARENTS STILL ARE ON IT SO I 380 00:13:35,280 --> 00:13:37,680 LEARNED SWIMMING SKILLS READILY 381 00:13:37,680 --> 00:13:38,760 YOUNG AND USED TO SOMETIMES GO 382 00:13:38,760 --> 00:13:41,400 TO THE OCEAN, ET CETERA, FROM 383 00:13:41,400 --> 00:13:42,760 THE JERSEY SHORE, BUT A LOT OF 384 00:13:42,760 --> 00:13:46,200 THE FOLKS WHO ARE AUTISTIC LACK 385 00:13:46,200 --> 00:13:47,760 FULL ACCESS, EQUAL ACCESS TO 386 00:13:47,760 --> 00:13:49,280 INSTRUCTION IN SWIMMING SKILLS, 387 00:13:49,280 --> 00:13:51,680 WATER SAFETY, ET CETERA. 388 00:13:51,680 --> 00:13:53,320 WHICH I THINK PARALLELS SOME 389 00:13:53,320 --> 00:13:54,840 OTHER DIVERSE UNDERREPRESENTED 390 00:13:54,840 --> 00:13:56,160 POPULATION GROUPS WHERE THERE'S 391 00:13:56,160 --> 00:13:57,480 MARGINALIZATION, INCLUDING, FOR 392 00:13:57,480 --> 00:13:59,360 INSTANCE, BLACK AMERICANS HAVE 393 00:13:59,360 --> 00:14:00,640 HISTORICALLY BEEN VERY 394 00:14:00,640 --> 00:14:01,840 MARGINALIZED IN TERMS OF FULL 395 00:14:01,840 --> 00:14:03,400 EQUAL ACCESS TO SWIMMING SAFETY 396 00:14:03,400 --> 00:14:07,600 AND EQUAL ACCESS TO POOLS, ET 397 00:14:07,600 --> 00:14:10,280 CETERA, OVER TIME, ALONG WITH 398 00:14:10,280 --> 00:14:11,360 OTHER AREAS IN TERMS OF 399 00:14:11,360 --> 00:14:12,800 DISCRIMINATION THAT HAS HAPPENED 400 00:14:12,800 --> 00:14:13,920 HISTORICALLY HERE IN THE UNITED 401 00:14:13,920 --> 00:14:14,960 STATES. 402 00:14:14,960 --> 00:14:16,200 AND YOU KNOW, I THINK IT'S 403 00:14:16,200 --> 00:14:17,280 SOMETHING THAT IF WE'RE GOING TO 404 00:14:17,280 --> 00:14:18,480 HAVE WATER SAFETY IN HERE, THAT 405 00:14:18,480 --> 00:14:19,680 THE SWIMMING INSTRUCTION IS 406 00:14:19,680 --> 00:14:21,880 REALLY HELPFUL TO HAVE. 407 00:14:21,880 --> 00:14:23,960 A FEW OTHER THINGS THAT I WANTED 408 00:14:23,960 --> 00:14:26,240 TO ADD ON HERE, THE 409 00:14:26,240 --> 00:14:26,840 TRANSPORTATION SECTION SHOULD 410 00:14:26,840 --> 00:14:30,200 HAVE A LITTLE BIT MORE ON TRAVEL 411 00:14:30,200 --> 00:14:33,040 TRAINING FOR CHILDREN AND YOUTH 412 00:14:33,040 --> 00:14:34,440 WHO ARE AUTISTIC AS FAR AS 413 00:14:34,440 --> 00:14:37,920 LEARNING TO USE TRANSPORTATION 414 00:14:37,920 --> 00:14:40,680 SYSTEMS, AND THAT VARIOUS FOLKS 415 00:14:40,680 --> 00:14:42,000 HAVE AS FAR AS ADOLESCENCE IN 416 00:14:42,000 --> 00:14:44,080 LEARNING TO OBTAIN A DRIVER'S 417 00:14:44,080 --> 00:14:46,040 LICENSE AND HOW TO ACCESS PUBLIC 418 00:14:46,040 --> 00:14:46,400 TRANSPORTATION. 419 00:14:46,400 --> 00:14:47,680 THERE'S SOME STUDIES I CAN SEND 420 00:14:47,680 --> 00:14:52,520 YOU THAT YOU COULD SA CITE QUICY 421 00:14:52,520 --> 00:14:54,440 IN THERE AND EASILY AND ALSO A 422 00:14:54,440 --> 00:14:55,440 REPORT FROM NEW JERSEY THAT'S 423 00:14:55,440 --> 00:14:57,360 VERY EXTENSIVE ON THIS SPACE 424 00:14:57,360 --> 00:15:00,560 THAT WAS PUBLISHED OUT OF 425 00:15:00,560 --> 00:15:01,000 RUTGERS UNIVERSITY. 426 00:15:01,000 --> 00:15:02,880 I FEEL LIKE I SHOULD COVER 427 00:15:02,880 --> 00:15:04,320 TRANSPORTATION ESPECIALLY SINCE 428 00:15:04,320 --> 00:15:08,360 DOT DOES NOT THAT TO NOT HAPN 429 00:15:08,360 --> 00:15:10,080 THIS COMMITTEE, BECAUSE THAT'S A 430 00:15:10,080 --> 00:15:11,640 MAJOR FOCUS AS FAR AS HERE IN 431 00:15:11,640 --> 00:15:14,160 THIS SPACE. 432 00:15:14,160 --> 00:15:15,240 AND THEN JUST A COUPLE OTHER 433 00:15:15,240 --> 00:15:18,960 THINGS THAT I WANTED TO CALL OUT 434 00:15:18,960 --> 00:15:19,920 WAS THE HOUSING AREA ON HERE 435 00:15:19,920 --> 00:15:21,160 DOES NOT MENTION THE HIGH RATE 436 00:15:21,160 --> 00:15:22,920 OF HOMELESSNESS THAT HAS BEEN 437 00:15:22,920 --> 00:15:24,800 FOUND BY RESEARCH OUT IN THE 438 00:15:24,800 --> 00:15:27,520 UNITED KINGDOM, AND ACROSS 439 00:15:27,520 --> 00:15:28,680 EUROPE, BUT WE NEED MORE 440 00:15:28,680 --> 00:15:31,440 RESEARCH ON THAT HOMELESSNESS 441 00:15:31,440 --> 00:15:33,400 FOCUS HERE IN THE UNITED STATES. 442 00:15:33,400 --> 00:15:35,400 IT'S A MAJOR GAP AS FAR AS THAT 443 00:15:35,400 --> 00:15:36,480 HOUSING, AND IT SEEMS LIKE 444 00:15:36,480 --> 00:15:38,520 THERE'S A REALLY HIGH RATE OF 445 00:15:38,520 --> 00:15:40,200 HOMELESSNESS AMONG AUTISTIC 446 00:15:40,200 --> 00:15:41,840 PEOPLE, BUT WE NEED A LOT MORE 447 00:15:41,840 --> 00:15:44,640 RESEARCH IN THAT SPACE ON 448 00:15:44,640 --> 00:15:47,480 HOUSING ACCESS AND VARIOUS 449 00:15:47,480 --> 00:15:48,720 FOLKS' EXPERIENCES AND HOW THAT 450 00:15:48,720 --> 00:15:50,040 RELATES BACK TO QUALITY OF LIFE. 451 00:15:50,040 --> 00:15:50,880 AND THEN JUST A COUPLE OTHER 452 00:15:50,880 --> 00:15:53,200 THINGS THAT I WANTED TO 453 00:15:53,200 --> 00:15:54,720 HIGHLIGHT WERE THE EDUCATION 454 00:15:54,720 --> 00:15:57,240 SYSTEM, THAT FULL CONTINUUM OF 455 00:15:57,240 --> 00:16:00,120 ACCESS FOR EDUCATION THAT HELPS 456 00:16:00,120 --> 00:16:01,960 FOLKS DEVELOP THEIR SKILLS AND 457 00:16:01,960 --> 00:16:04,240 TALENTS THROUGH EDUCATION IN 458 00:16:04,240 --> 00:16:06,120 K-12 AND THEN THE 459 00:16:06,120 --> 00:16:07,960 CROSS-CONNECTION ON THAT FOR 460 00:16:07,960 --> 00:16:08,960 TRANSITIONING OVER TO HIGHER 461 00:16:08,960 --> 00:16:10,320 EDUCATION AND POST SECONDARY 462 00:16:10,320 --> 00:16:11,920 EDUCATION AND TRAINING, THAT A 463 00:16:11,920 --> 00:16:13,560 LOT OF FOLKS DON'T HAVE EQUAL 464 00:16:13,560 --> 00:16:15,720 ACCESS INCLUDING ESPECIALLY 465 00:16:15,720 --> 00:16:16,840 AUTISTIC PEOPLE, OTHER FOLKS 466 00:16:16,840 --> 00:16:18,400 WITH DISABILITIES TO EDUCATION 467 00:16:18,400 --> 00:16:19,680 ACROSS THE BOARD AS THEY'RE 468 00:16:19,680 --> 00:16:24,600 GROWING UP, AND HAVING RECEIVED 469 00:16:24,600 --> 00:16:25,320 ACCOMMODATIONS, SUPPORTS THEY 470 00:16:25,320 --> 00:16:27,200 NEED TO BE SUCCESSFUL IN SCHOOL, 471 00:16:27,200 --> 00:16:29,160 AGAIN IN K-12 AND BEYOND, AND 472 00:16:29,160 --> 00:16:31,160 HAVING FULL TRANSITION SUPPORTS 473 00:16:31,160 --> 00:16:32,680 THAT ARE CONSISTENTLY ABLE TO 474 00:16:32,680 --> 00:16:36,640 EMPOWER FOEMPOWER FOLKS TO HAVEL 475 00:16:36,640 --> 00:16:37,800 ACCESS TO EDUCATION. 476 00:16:37,800 --> 00:16:39,240 THE OTHER ELEMENT I WANTED TO 477 00:16:39,240 --> 00:16:41,160 TOUCH UPON WAS INCLUDING HERE IN 478 00:16:41,160 --> 00:16:43,600 THE EDUCATION SYSTEM, THE 479 00:16:43,600 --> 00:16:45,600 WORKFORCE TRAINING AND OTHER 480 00:16:45,600 --> 00:16:46,800 AREAS, THAT THERE SHOULD BE 481 00:16:46,800 --> 00:16:48,000 PARTNERSHIPS OF AUTISTIC PEOPLE 482 00:16:48,000 --> 00:16:50,280 ON EDUCATING SERVICE PROVIDERS 483 00:16:50,280 --> 00:16:55,080 ABOUT AUTISM, THE LIVED 484 00:16:55,080 --> 00:16:56,280 EXPERIENCE, PROMISING PRACTICES. 485 00:16:56,280 --> 00:16:57,960 I THINK IT SHOULD BE WEAVED INTO 486 00:16:57,960 --> 00:16:59,280 HERE THROUGHOUT THIS SECTION AND 487 00:16:59,280 --> 00:17:00,760 OTHER ASPECTS OF THE STRATEGIC 488 00:17:00,760 --> 00:17:02,520 PLAN, IS THAT PARTNERSHIP 489 00:17:02,520 --> 00:17:03,960 COLLABORATION WITH AUTISTIC 490 00:17:03,960 --> 00:17:04,400 PEOPLE. 491 00:17:04,400 --> 00:17:06,360 IT'S VERY UNDEREMPHASIZED IN 492 00:17:06,360 --> 00:17:08,920 RESEARCH, AND PRACTICE, AND THIS 493 00:17:08,920 --> 00:17:09,960 FITS INTO THE OTHER AREAS WE 494 00:17:09,960 --> 00:17:11,520 TOUCHED UPON, FOR INSTANCE, 495 00:17:11,520 --> 00:17:13,360 YESTERDAY LIKE PEER SUPPORTS, 496 00:17:13,360 --> 00:17:15,000 WHERE THAT COLLABORATION WITH 497 00:17:15,000 --> 00:17:17,320 AUTISTIC PEOPLE IS IMMENSELY 498 00:17:17,320 --> 00:17:18,280 IMPORTANT, AND HAVING TRAINING 499 00:17:18,280 --> 00:17:21,680 FOR AUTISTIC PEOPLE TO HELP 500 00:17:21,680 --> 00:17:22,560 EMPOWER YOU A TUS TICK PEOPLE 501 00:17:22,560 --> 00:17:23,840 AND FAMILIES AND TO ACCESS 502 00:17:23,840 --> 00:17:25,640 SUPPORTS AND SERVICES IN THAT 503 00:17:25,640 --> 00:17:26,480 SYSTEMS NAVIGATION PIECE THAT 504 00:17:26,480 --> 00:17:27,680 WAS ALSO MENTIONED YESTERDAY AS 505 00:17:27,680 --> 00:17:28,880 FAR AS ACCESS TO SUPPORTS AND 506 00:17:28,880 --> 00:17:30,160 SERVICES. 507 00:17:30,160 --> 00:17:31,880 >> THANK YOU SO MUCH, SCOTT, FOR 508 00:17:31,880 --> 00:17:32,600 THOSE COMMENTS. 509 00:17:32,600 --> 00:17:36,000 AND WE WILL TAKE THOSE DOWN. 510 00:17:36,000 --> 00:17:37,760 ON HOMELESSNESS, WE DID TALK 511 00:17:37,760 --> 00:17:39,760 ABOUT HOMELESSNESS AT OUR LAST 512 00:17:39,760 --> 00:17:41,280 IACC MEETING AND THAT IS INDEED 513 00:17:41,280 --> 00:17:43,000 ON THE FEDERAL AGENDA AND WE 514 00:17:43,000 --> 00:17:44,760 WILL WANT TO MAKE MENTION OF 515 00:17:44,760 --> 00:17:46,280 THAT IN THE STRATEGIC PLAN. 516 00:17:46,280 --> 00:17:49,000 SO APPRECIATE HEARING ABOUT 517 00:17:49,000 --> 00:17:49,200 THAT. 518 00:17:49,200 --> 00:17:52,760 I SAW ALYCIA HALLADAY, YOU HAD A 519 00:17:52,760 --> 00:17:53,480 REFERENCE TO SHARE. 520 00:17:53,480 --> 00:17:55,160 DO YOU MIND JUST HOPPING ON AND 521 00:17:55,160 --> 00:17:59,240 MENTIONING WHAT THAT IS? 522 00:17:59,240 --> 00:18:00,720 >> HI, EVERYBODY. 523 00:18:00,720 --> 00:18:03,880 SORRY, I SENT TO SUSAN FOR POINT 524 00:18:03,880 --> 00:18:06,400 OF CLARIFICATION, BUT IN FACT, 525 00:18:06,400 --> 00:18:08,080 THERE ARE A NUMBER OF 526 00:18:08,080 --> 00:18:09,040 EPIDEMIOLOGICAL STUDIES USING 527 00:18:09,040 --> 00:18:12,640 DIFFERENT DESIGNS THAT SHOW THAT 528 00:18:12,640 --> 00:18:16,800 DROWNING IS AT AN INCREASED RISK 529 00:18:16,800 --> 00:18:17,360 FOR KIDS. 530 00:18:17,360 --> 00:18:19,280 THE STUDY WAS IN CHILDREN, OR 531 00:18:19,280 --> 00:18:20,400 THE STUDIES HAVE BEEN IN 532 00:18:20,400 --> 00:18:21,800 CHILDREN, BUT THERE IS EVIDENCE 533 00:18:21,800 --> 00:18:24,920 TO SAY THAT DROWNING IS ONE OF 534 00:18:24,920 --> 00:18:27,000 THE LEADING CAUSES OF DEATH. 535 00:18:27,000 --> 00:18:28,840 SOME STUDIES ARE SHOWING THAT 536 00:18:28,840 --> 00:18:31,800 EPILEPSY HAS A HIGHER MORTALITY 537 00:18:31,800 --> 00:18:34,400 RATE THAN DROWNING, BUT YOU 538 00:18:34,400 --> 00:18:35,840 KNOW, I THINK THAT THERE IS 539 00:18:35,840 --> 00:18:37,040 SCIENTIFIC EVIDENCE FOR US TO BE 540 00:18:37,040 --> 00:18:38,680 VERY, VERY CONCERNED ABOUT 541 00:18:38,680 --> 00:18:39,920 DROWNING. 542 00:18:39,920 --> 00:18:42,720 AND I WON'T PRETEND TO KNOW 543 00:18:42,720 --> 00:18:44,360 WHAT, IN FACT, THE SOLUTION 544 00:18:44,360 --> 00:18:46,120 SHOULD BE, WHETHER IT'S SWIMMING 545 00:18:46,120 --> 00:18:47,200 LESSONS, WHETHER IT'S, YOU KNOW, 546 00:18:47,200 --> 00:18:49,200 KIDS WEARING THESE WATER -- 547 00:18:49,200 --> 00:18:51,360 THESE THINGS THAT TELL WHETHER 548 00:18:51,360 --> 00:18:52,800 THEY'RE IN CONTACT WITH WATER, 549 00:18:52,800 --> 00:18:55,840 THERE ARE SOME OF THESE WATER 550 00:18:55,840 --> 00:18:57,280 BRACELETS, MECHANISMS TO -- I 551 00:18:57,280 --> 00:18:59,440 THINK MECHANISMS TO ALLEVIATE 552 00:18:59,440 --> 00:19:00,880 WANDERING ARE A HIGH, HIGH 553 00:19:00,880 --> 00:19:01,840 PRIORITY, BUT I WANTED TO SEND 554 00:19:01,840 --> 00:19:04,280 SOME OF THAT EVIDENCE TO SUSAN 555 00:19:04,280 --> 00:19:08,000 JUST FOR HER INFORMATION. 556 00:19:08,000 --> 00:19:09,520 >> I APPRECIATE THAT. 557 00:19:09,520 --> 00:19:10,840 ALYCIA, IF YOU WOULDN'T MIND TO 558 00:19:10,840 --> 00:19:13,800 BE SENDING TO IACC TEAM TO MAKE 559 00:19:13,800 --> 00:19:15,960 SURE IT DOESN'T GET LOST IN THE 560 00:19:15,960 --> 00:19:17,360 CHAT, I'D LOVE TO HAVE THOSE 561 00:19:17,360 --> 00:19:17,680 REFERENCES. 562 00:19:17,680 --> 00:19:18,280 >> OKAY. 563 00:19:18,280 --> 00:19:20,160 SHOULD I EMAIL THEM OR SEND THEM 564 00:19:20,160 --> 00:19:20,360 TO -- 565 00:19:20,360 --> 00:19:20,920 >> MM-HMM. 566 00:19:20,920 --> 00:19:21,440 >> OKAY. 567 00:19:21,440 --> 00:19:23,120 >> IF YOU COULD JUST EMAIL THEM, 568 00:19:23,120 --> 00:19:24,080 THAT WOULD BE GREAT. 569 00:19:24,080 --> 00:19:25,520 OR IF YOU PUT THEM IN THE CHAT 570 00:19:25,520 --> 00:19:27,160 TO EVERYBODY, THEN OUR TEAM CAN 571 00:19:27,160 --> 00:19:28,120 JUST GRAB THEM OFF THE CHAT. 572 00:19:28,120 --> 00:19:30,200 >> I'LL JUST EMAIL THEM TO SAVE 573 00:19:30,200 --> 00:19:30,400 TIME. 574 00:19:30,400 --> 00:19:30,720 >> ALL RIGHT. 575 00:19:30,720 --> 00:19:31,720 THANK YOU. 576 00:19:31,720 --> 00:19:32,280 ALL RIGHT. 577 00:19:32,280 --> 00:19:34,120 I'M GOING TO GO TO STEVEN FOR 578 00:19:34,120 --> 00:19:39,280 WRITTEN COMMENT. 579 00:19:39,280 --> 00:19:41,560 >> GOOD AFTERNOON, EVERYONE. 580 00:19:41,560 --> 00:19:44,720 NICOLE WILLIAMS SEPTEMBE SENT MA 581 00:19:44,720 --> 00:19:46,320 COMMENT ASKING, DO WE NEED TO 582 00:19:46,320 --> 00:19:47,560 SPECIFICALLY MENTION THE 583 00:19:47,560 --> 00:19:48,480 TRAINING OF FIRST RESPONDERS 584 00:19:48,480 --> 00:19:51,120 WHEN WE SPEAK ABOUT TRAINING AND 585 00:19:51,120 --> 00:19:52,080 DEVELOPMENT ON THE SECOND TO 586 00:19:52,080 --> 00:19:53,320 LAST BULLET? 587 00:19:53,320 --> 00:19:55,680 >> THAT IS A GREAT COMMENT. 588 00:19:55,680 --> 00:19:57,680 WE CAN CERTAINLY MAKE SURE THAT 589 00:19:57,680 --> 00:19:59,400 WE PULL OUT TRAINING OF FIRST 590 00:19:59,400 --> 00:19:59,760 RESPONDERS. 591 00:19:59,760 --> 00:20:01,040 THERE IS SOMETHING MORE ABOUT 592 00:20:01,040 --> 00:20:04,400 THAT IN QUESTION 6, ESPECIALLY 593 00:20:04,400 --> 00:20:05,840 WITH REGARD TO, SAY, LAW 594 00:20:05,840 --> 00:20:06,560 ENFORCEMENT, BUT I THINK THAT 595 00:20:06,560 --> 00:20:07,480 WOULD BE APPROPRIATE TO PUT IN 596 00:20:07,480 --> 00:20:10,560 HERE TOO. 597 00:20:10,560 --> 00:20:11,560 >> THANKS, SUSAN. 598 00:20:11,560 --> 00:20:13,200 I JUST WASN'T SURE, ESPECIALLY 599 00:20:13,200 --> 00:20:14,920 IF THE DOJ IS NOT HERE, I DIDN'T 600 00:20:14,920 --> 00:20:16,480 KNOW WHETHER IT WOULD FIT WITH 601 00:20:16,480 --> 00:20:18,080 QUESTION 5 OR 6, SO I JUST 602 00:20:18,080 --> 00:20:18,960 THOUGHT I'D BRING IT UP NOW. 603 00:20:18,960 --> 00:20:20,720 >> I APPRECIATE THAT. 604 00:20:20,720 --> 00:20:22,040 THANK YOU TO YOU AND SCOTT BOTH 605 00:20:22,040 --> 00:20:23,360 FOR TRYING TO STEP IN FOR 606 00:20:23,360 --> 00:20:24,520 AGENCIES THAT MIGHT NOT BE 607 00:20:24,520 --> 00:20:26,960 REPRESENTED HERE TODAY. 608 00:20:26,960 --> 00:20:28,600 AND TRANSPORTATION IS ON THE 609 00:20:28,600 --> 00:20:30,240 FEDERAL INTERAGENCY WORK GROUP 610 00:20:30,240 --> 00:20:31,160 FOR AUTISM BUT THEY'RE NOT ON 611 00:20:31,160 --> 00:20:32,480 THE COMMITTEE, SO THARNTION 612 00:20:32,480 --> 00:20:36,480 STHANKS, SCOTT,FOR REPRESENTING. 613 00:20:36,480 --> 00:20:37,440 IVANOVA SMITH, DO YOU HAVE 614 00:20:37,440 --> 00:20:38,600 ANOTHER COMMENT? 615 00:20:38,600 --> 00:20:41,400 >> HELLO, THIS IS IVANOVA SMITH. 616 00:20:41,400 --> 00:20:42,920 I JUST WANT TO COMMENT ABOUT 617 00:20:42,920 --> 00:20:45,480 WANDERING. 618 00:20:45,480 --> 00:20:47,320 I THINK THAT'S REALLY IMPORTANT 619 00:20:47,320 --> 00:20:50,800 THAT AUTISTIC CHILDREN GET 620 00:20:50,800 --> 00:20:56,400 SUPPORT IN THEIR EXPLORATION, 621 00:20:56,400 --> 00:20:58,040 AND IS THERE A WAY WE CAN HAVE 622 00:20:58,040 --> 00:20:59,000 SERVICE PROVIDERS TO HAVE 623 00:20:59,000 --> 00:21:01,840 PARTNERSHIPS WITH, LIKE, HIKING 624 00:21:01,840 --> 00:21:04,160 GROUPS AND DIFFERENT GROUPS THAT 625 00:21:04,160 --> 00:21:06,240 ALLOWS PEOPLE TO GO ON LONG 626 00:21:06,240 --> 00:21:09,200 WALKS AND HELPING PROVIDE 627 00:21:09,200 --> 00:21:10,960 SUPPORT AUTISTIC PEOPLE IN 628 00:21:10,960 --> 00:21:13,440 EXPLORING THE ENVIRONMENT. 629 00:21:13,440 --> 00:21:15,080 AND I ALSO REALLY WANT TO 630 00:21:15,080 --> 00:21:16,440 EMPHASIZE THE IMPORTANCE OF 631 00:21:16,440 --> 00:21:18,680 SWIMMING LESSONS. 632 00:21:18,680 --> 00:21:22,880 IT'S REALLY IMPORTANT THAT 633 00:21:22,880 --> 00:21:24,600 AUTISTIC PEOPLE GET PRACTICE 634 00:21:24,600 --> 00:21:29,200 SWIMMING, BECAUSE YOU KNOW, FINE 635 00:21:29,200 --> 00:21:35,440 MOTOR SKILLS, THEY HAVE PROBLEMS 636 00:21:35,440 --> 00:21:36,640 WITH MOTOR PLANNING, GET 637 00:21:36,640 --> 00:21:37,640 SWIMMING LESSONS AS SOON AS 638 00:21:37,640 --> 00:21:39,400 POSSIBLE AND IT PROBABLY SHOULD 639 00:21:39,400 --> 00:21:40,480 BE PART OF THE EARLY 640 00:21:40,480 --> 00:21:42,120 INTERVENTION STRATEGIES, IF THEY 641 00:21:42,120 --> 00:21:44,520 CAN SHOW THAT AUTISTIC CHILDREN 642 00:21:44,520 --> 00:21:46,160 OR ANY CHILDREN THAT NEED EXTRA 643 00:21:46,160 --> 00:21:49,120 SUPPORTS GET SWIMMING LESSONS. 644 00:21:49,120 --> 00:21:51,040 AS PART OF THE EARLY 645 00:21:51,040 --> 00:21:54,680 INTERVENTION PROGRAMS. 646 00:21:54,680 --> 00:21:56,680 >> THANK YOU. 647 00:21:56,680 --> 00:22:00,520 AND YES, WE ALSO CAN BE THINKING 648 00:22:00,520 --> 00:22:02,120 ABOUT PHYSICAL ACTIVITY AS A 649 00:22:02,120 --> 00:22:04,440 HEALTH PROMOTION ACTIVITY AS 650 00:22:04,440 --> 00:22:08,160 WELL, AND NOT JUST THE SAFETY 651 00:22:08,160 --> 00:22:11,880 SIDE. 652 00:22:11,880 --> 00:22:13,560 SO THAT'S ANOTHER THING WE CAN 653 00:22:13,560 --> 00:22:14,520 PROBABLY PUT IN. 654 00:22:14,520 --> 00:22:15,320 DENA. 655 00:22:15,320 --> 00:22:22,400 >> GOOD AFTERNOON, EVERYBODY. 656 00:22:22,400 --> 00:22:24,360 I APOLOGIZE FOR JUMPING ON LATE 657 00:22:24,360 --> 00:22:26,320 AND IF THESE THINGS HAVE BEEN 658 00:22:26,320 --> 00:22:27,760 ADDRESSED, JUST DISMISS IT. 659 00:22:27,760 --> 00:22:29,000 BUT IN TERMS OF HEALTHCARE, AND 660 00:22:29,000 --> 00:22:31,040 I DON'T KNOW, MAYBE UNDER MENTAL 661 00:22:31,040 --> 00:22:32,480 HEALTH, THERE'S A SLIDE 662 00:22:32,480 --> 00:22:34,120 SOMEWHERE ELSE, BUT SUICIDE 663 00:22:34,120 --> 00:22:37,800 PREVENTION SERVICES, 664 00:22:37,800 --> 00:22:39,680 ACCOMMODATED SUICIDE PREVENTION 665 00:22:39,680 --> 00:22:43,160 SERVICES ARE NOT NOTED HERE. 666 00:22:43,160 --> 00:22:47,440 ALSO WORKFORCE TRAINING ON 667 00:22:47,440 --> 00:22:49,520 HEALTHCARE DELIVERY IS REALLY 668 00:22:49,520 --> 00:22:51,040 IMPORTANT FROM THE ER SYSTEM TO 669 00:22:51,040 --> 00:22:53,640 ANY OTHER MEDICAL SYSTEM WE HAVE 670 00:22:53,640 --> 00:22:56,720 TO 1/ NAVIGATE. 671 00:22:56,720 --> 00:22:59,040 IN TERMS OF SUPPORTS AND 672 00:22:59,040 --> 00:23:01,080 SERVICES, THE BARRIERS WE FACE 673 00:23:01,080 --> 00:23:03,880 IN NAVIGATING SOCIAL SECURITY 674 00:23:03,880 --> 00:23:04,600 ARE SIGNIFICANT. 675 00:23:04,600 --> 00:23:09,000 I MEAN, INDIVIDUALS ON SSI ARE 676 00:23:09,000 --> 00:23:11,160 MAKING FAR BELOW THE FEDERAL 677 00:23:11,160 --> 00:23:13,800 POVERTY LEVEL, AND HOUSING IN 678 00:23:13,800 --> 00:23:15,960 NEW YORK IS AVERAGED -- THIS WAS 679 00:23:15,960 --> 00:23:16,800 IN THE "NEW YORK TIMES," AT 680 00:23:16,800 --> 00:23:18,160 $5,000 A MONTH NOW IN NEW YORK 681 00:23:18,160 --> 00:23:19,240 CITY. 682 00:23:19,240 --> 00:23:21,120 AND A LOT OF PEOPLE WHO ARE 683 00:23:21,120 --> 00:23:22,560 DISABLED IN NEW YORK TRY TO LIVE 684 00:23:22,560 --> 00:23:23,640 IN THE CITY BECAUSE OF THE 685 00:23:23,640 --> 00:23:26,040 ACCESS TO TRANSPORTATION, BUT 686 00:23:26,040 --> 00:23:27,160 CLEARLY, YOU KNOW, THINGS ARE 687 00:23:27,160 --> 00:23:29,440 NOT EQUITABLE IN TERMS OF THAT 688 00:23:29,440 --> 00:23:31,200 NEED FOR A LIVING WAGE, WE HAVE 689 00:23:31,200 --> 00:23:33,360 ISSUES WITH THE MARRIAGE 690 00:23:33,360 --> 00:23:34,560 PENALTY, LIMITING THE AMOUNT OF 691 00:23:34,560 --> 00:23:37,640 MONEY A COUPLE CAN HAVE. 692 00:23:37,640 --> 00:23:40,040 SO I MEAN, I THINK PEOPLE HAVING 693 00:23:40,040 --> 00:23:44,320 SOMETHING THAT LOOKS CLOSER TO A 694 00:23:44,320 --> 00:23:46,960 LIVING WAGE IS CRITICAL BECAUSE 695 00:23:46,960 --> 00:23:48,240 POVERTY IS ANOTHER FORM OF 696 00:23:48,240 --> 00:23:48,720 TRAUMA, RIGHT? 697 00:23:48,720 --> 00:23:50,200 AND WE JUST TALKED ABOUT PEOPLE 698 00:23:50,200 --> 00:23:54,720 WHO ARE WITHOUT HOUSING. 699 00:23:54,720 --> 00:23:56,200 SO IT'S NOT JUST LIMITED TO 700 00:23:56,200 --> 00:23:56,400 THAT. 701 00:23:56,400 --> 00:23:58,000 PEOPLE WHO ARE TRYING TO LIVE ON 702 00:23:58,000 --> 00:23:59,320 $800 A MONTH ARE, YOU KNOW -- 703 00:23:59,320 --> 00:24:03,240 AND THEN THE PENALTIES FOR 704 00:24:03,240 --> 00:24:04,120 INADVERTENTLY OVERSTEPPING IN 705 00:24:04,120 --> 00:24:08,480 THOSE SYSTEMS ARE REALLY 706 00:24:08,480 --> 00:24:08,680 ABUSIVE. 707 00:24:08,680 --> 00:24:10,680 AND I ALSO DON'T SEE ANYTHING 708 00:24:10,680 --> 00:24:13,640 HERE THAT OFFERS AN OPTION FOR 709 00:24:13,640 --> 00:24:16,480 ADULTS OTHER THAN EMPLOYMENT. 710 00:24:16,480 --> 00:24:18,640 WE HAVE THIS MYSTICAL THINKING 711 00:24:18,640 --> 00:24:23,480 THAT IF SOMEONE HAS A JOB. 712 00:24:23,480 --> 00:24:25,040 THAT THAT WILL SOLVE ALL THE 713 00:24:25,040 --> 00:24:25,520 ISSUES. 714 00:24:25,520 --> 00:24:26,640 WE SEE THE RATES OF UNEMPLOYMENT 715 00:24:26,640 --> 00:24:28,800 IN OUR POPULATION, AND WHILE 716 00:24:28,800 --> 00:24:30,680 AGAIN PART OF THAT IS BECAUSE OF 717 00:24:30,680 --> 00:24:32,880 SERVICE DEFICITS, PART OF IT IS 718 00:24:32,880 --> 00:24:35,640 DUE TO WORKPLACE DISCRIMINATION, 719 00:24:35,640 --> 00:24:37,800 PART OF IT IS THAT NOT ALL 720 00:24:37,800 --> 00:24:38,600 AUTISTIC PEOPLE CAN WORK FULL 721 00:24:38,600 --> 00:24:40,640 TIME. 722 00:24:40,640 --> 00:24:42,720 AND NOT HAVING SOMETHING IN 723 00:24:42,720 --> 00:24:45,360 BETWEEN, SOMETHING WHERE PEOPLE 724 00:24:45,360 --> 00:24:47,760 CAN GO TO QUALITY RECREATIONAL 725 00:24:47,760 --> 00:24:51,120 PROGRAMS OR DAY PROGRAMS OR 726 00:24:51,120 --> 00:24:53,200 VOLUNTEERISM WITH SUPPORT, TO 727 00:24:53,200 --> 00:24:55,040 STILL HAVE A FULL AND ENRICHING 728 00:24:55,040 --> 00:24:57,480 LIFE IS REALLY A HUGE GAP IN 729 00:24:57,480 --> 00:24:59,400 TERMS OF SERVICE DELIVERY. 730 00:24:59,400 --> 00:25:01,640 SO I JUST WANTED TO ADD THOSE 731 00:25:01,640 --> 00:25:04,160 THINGS THERE. 732 00:25:04,160 --> 00:25:04,800 OKAY, WAIT A MINUTE. 733 00:25:04,800 --> 00:25:06,440 OKAY, I'M GOING TO WAIT FOR 734 00:25:06,440 --> 00:25:07,440 DISPARITIES LATER. 735 00:25:07,440 --> 00:25:07,680 THANKS. 736 00:25:07,680 --> 00:25:08,960 >> OKAY, THANKS. 737 00:25:08,960 --> 00:25:10,160 YES, AND SOME OF THOSE ISSUES 738 00:25:10,160 --> 00:25:11,560 ARE IN QUESTION 6. 739 00:25:11,560 --> 00:25:14,240 I KNOW IT'S A LITTLE CONFUSING 740 00:25:14,240 --> 00:25:15,720 FOR THE WAY THE PLAN 741 00:25:15,720 --> 00:25:16,720 HISTORICALLY WAS SET UP. 742 00:25:16,720 --> 00:25:19,720 THERE WAS A QUESTION 51ST, AND 743 00:25:19,720 --> 00:25:21,880 THEN QUESTION 6 CAME A YEAR 744 00:25:21,880 --> 00:25:23,320 LATER, BECAUSE THEY WANTED TO 745 00:25:23,320 --> 00:25:25,040 PULL OUT MORE ABOUT ADULTHOOD, 746 00:25:25,040 --> 00:25:26,240 AND WE'VE KEPT THAT STRUCTURE 747 00:25:26,240 --> 00:25:27,240 OVER THE YEARS. 748 00:25:27,240 --> 00:25:29,640 SO SOME OF THESE ISSUES ARE IN 749 00:25:29,640 --> 00:25:31,640 QUESTION 6, BUT THESE ARE 750 00:25:31,640 --> 00:25:32,480 HELPFUL COMMENTS SO I APPRECIATE 751 00:25:32,480 --> 00:25:33,800 THAT. 752 00:25:33,800 --> 00:25:34,800 THANK YOU, DENA. 753 00:25:34,800 --> 00:25:35,400 >> THANK YOU. 754 00:25:35,400 --> 00:25:39,520 >> SAM. 755 00:25:39,520 --> 00:25:41,800 >> THIS IS JUST A VERY SHORT 756 00:25:41,800 --> 00:25:44,520 COMMENT BUT I WOULD REALLY LIKE 757 00:25:44,520 --> 00:25:45,440 IVANOVA'S RECOMMENDATION ABOUT 758 00:25:45,440 --> 00:25:50,000 OUTDOOR PROGRAMS AND IT REMINDED 759 00:25:50,000 --> 00:25:53,280 ME OF NON-AUTISM-SPECIFIC 760 00:25:53,280 --> 00:25:55,680 RESEARCH SAYING THAT WHEN 761 00:25:55,680 --> 00:25:56,600 CHILDREN HAVE -- I BELIEVE THE 762 00:25:56,600 --> 00:25:58,720 TERM THAT THEY OFTEN USE IS 763 00:25:58,720 --> 00:26:00,360 RISKY, YOU KNOW, RISKY 764 00:26:00,360 --> 00:26:03,680 ACTIVITIES VERSUS DANGEROUS 765 00:26:03,680 --> 00:26:08,240 ACTIVITIES, RISKIER PLAYGROUNDS, 766 00:26:08,240 --> 00:26:15,160 RISKWHERE KIDS CAN EXPLORE THE 767 00:26:15,160 --> 00:26:16,040 BOUNDARY BETWEEN SAFETY AND 768 00:26:16,040 --> 00:26:19,000 RISK, THEY ARE ACTUALLY FAR LESS 769 00:26:19,000 --> 00:26:20,520 LIKELY T DIE FROM ACCIDENTAL 770 00:26:20,520 --> 00:26:21,280 INJURY. 771 00:26:21,280 --> 00:26:23,040 SO I THINK THAT THAT WOULD BE A 772 00:26:23,040 --> 00:26:27,720 REALLY FRUITFUL AREA TO EXPLORE, 773 00:26:27,720 --> 00:26:29,480 IS THE EXTENT TO WHICH THAT 774 00:26:29,480 --> 00:26:31,680 PRINCIPLE PLAYS OUT AMONG 775 00:26:31,680 --> 00:26:33,120 AUTISTIC CHILDREN, MANY OF WHOM, 776 00:26:33,120 --> 00:26:38,120 I THINK, PEOPLE MIGHT UNDERVALUE 777 00:26:38,120 --> 00:26:39,880 RISKY ACTIVITIES THINKING, OH, 778 00:26:39,880 --> 00:26:41,400 AUTISTIC CHILDREN ARE SO MUCH -- 779 00:26:41,400 --> 00:26:43,920 YOU KNOW, AT SO MUCH HIGHER RISK 780 00:26:43,920 --> 00:26:47,440 OF ACCIDENTAL DEATH MIGHT 781 00:26:47,440 --> 00:26:49,280 PARADOXICALLY EXACERBATE THAT 782 00:26:49,280 --> 00:26:51,800 RISK TO NOT OFFER SAFE 783 00:26:51,800 --> 00:26:55,440 OPPORTUNITIES TO ENGAGE IN RISK. 784 00:26:55,440 --> 00:26:56,600 >> THANK YOU, SAM. 785 00:26:56,600 --> 00:26:57,960 I KNOW I'VE READ THAT RESEARCH 786 00:26:57,960 --> 00:26:59,040 TOO. 787 00:26:59,040 --> 00:27:00,960 IT WASN'T AUTISM-SPECIFIC, BUT 788 00:27:00,960 --> 00:27:02,080 THAT'S A GOOD POINT. 789 00:27:02,080 --> 00:27:06,000 THANK YOU FOR RAISING THAT. 790 00:27:06,000 --> 00:27:06,960 SCOTT ROBERTSON. 791 00:27:06,960 --> 00:27:07,960 >> YEP. 792 00:27:07,960 --> 00:27:08,400 THANKS, SUSAN. 793 00:27:08,400 --> 00:27:13,160 I WANTED TO CONCUR WITH WHAT SAM 794 00:27:13,160 --> 00:27:14,880 JUST SHARED AS FAR AS THE 795 00:27:14,880 --> 00:27:16,960 DIGNITY OF RISK PRINCIPLE AND 796 00:27:16,960 --> 00:27:20,880 EQUAL ACCESS FOR AUTISTIC PEOPLE 797 00:27:20,880 --> 00:27:22,640 TO HAVE THAT PARALLEL THAT 798 00:27:22,640 --> 00:27:23,400 NON-AUTISTIC PEOPLE HAVE, AS FAR 799 00:27:23,400 --> 00:27:25,280 AS BEING ABLE TO PURSUE 800 00:27:25,280 --> 00:27:27,680 OPPORTUNITIES OF LIFE THAT FIT 801 00:27:27,680 --> 00:27:30,080 FOLKS' INTERESTS AND STRENGTHS, 802 00:27:30,080 --> 00:27:32,040 AND YOU KNOW, THAT MAY HAVE SOME 803 00:27:32,040 --> 00:27:33,680 SLIGHT CHALLENGES AT TIMES 804 00:27:33,680 --> 00:27:35,520 BECAUSE SOMETIMES FOLKS ARE SO 805 00:27:35,520 --> 00:27:37,920 OVERPROTECTED BECAUSE OF BELIEFS 806 00:27:37,920 --> 00:27:39,800 ABOUT -- AND THIS IS NOT JUST 807 00:27:39,800 --> 00:27:40,680 SPECIFIC TO AUTISM. 808 00:27:40,680 --> 00:27:42,000 THIS IS A CHALLENGE THAT WE'VE 809 00:27:42,000 --> 00:27:43,000 SEEN HISTORICALLY, FOR INSTANCE, 810 00:27:43,000 --> 00:27:48,680 IN DEVELOPMENT DISABILITIES MORE 811 00:27:48,680 --> 00:27:49,640 BROADLY AND OTHER SIGNIFICANT 812 00:27:49,640 --> 00:27:51,200 TYPES OF DISABILITIES, BUT I 813 00:27:51,200 --> 00:27:52,840 DEFINITELY CONCUR THAT FOLKS 814 00:27:52,840 --> 00:27:53,920 SHOULD BE ABLE TO HAVE DIFFERENT 815 00:27:53,920 --> 00:27:54,600 OPPORTUNITIES TO EXPERIENCE 816 00:27:54,600 --> 00:27:56,560 DIFFERENT ELEMENTS IN LIFE AND 817 00:27:56,560 --> 00:27:58,880 NOT BE SEGREGATED OR SEPARATED 818 00:27:58,880 --> 00:28:00,160 AWAY FROM OPPORTUNITIES TO 819 00:28:00,160 --> 00:28:01,880 PURSUE IN CHILDHOOD AND 820 00:28:01,880 --> 00:28:03,320 ADOLESCENCE, AND ADULT LIFE. 821 00:28:03,320 --> 00:28:04,440 THAT MEANS THAT FOLKS SHOULD 822 00:28:04,440 --> 00:28:05,720 ALSO HAVE THE SUPPORTS AND 823 00:28:05,720 --> 00:28:10,120 ACCOMMODATIONS THEY NEED TO 824 00:28:10,120 --> 00:28:11,120 MITIGATE DIFFICULTIES AND 825 00:28:11,120 --> 00:28:12,400 CHALLENGES AS THEY OCCUR, SO I 826 00:28:12,400 --> 00:28:13,720 THINK THERE'S THAT BALANCE POINT 827 00:28:13,720 --> 00:28:16,120 KIND OF ON THAT, AND THAT'S WHAT 828 00:28:16,120 --> 00:28:18,200 THE DIGNITY OF RISK PHILOSOPHY 829 00:28:18,200 --> 00:28:20,200 AND DEVELOPMENT DISABILITY 830 00:28:20,200 --> 00:28:21,160 COMMUNITY AND SELF DETERMINATION 831 00:28:21,160 --> 00:28:23,920 FOR FOLKS WHO ARE -- WITH 832 00:28:23,920 --> 00:28:25,640 DISABILITIES IN TERMS OF 833 00:28:25,640 --> 00:28:26,840 CHILDREN, ADOLESCENTS AND ADULTS 834 00:28:26,840 --> 00:28:27,280 IS SO IMPORTANT. 835 00:28:27,280 --> 00:28:30,800 AND I ALSO WANTED TO CONCUR WITH 836 00:28:30,800 --> 00:28:32,080 EMPHASIZING MORE HERE IN THE 837 00:28:32,080 --> 00:28:33,200 CHAPTER ON THE COMMUNITY LIVING 838 00:28:33,200 --> 00:28:34,880 ASPECT FOR CHILDREN, ADOLESCENTS 839 00:28:34,880 --> 00:28:35,880 AND ADULTS. 840 00:28:35,880 --> 00:28:36,800 AGAIN FOLKS ARE SOMETIMES 841 00:28:36,800 --> 00:28:39,640 SEPARATED AWAY FROM HAVING THAT 842 00:28:39,640 --> 00:28:41,160 FULL ACCESS, EQUAL ACCESS TO 843 00:28:41,160 --> 00:28:42,360 COMMUNITY LIVING ACROSS MANY 844 00:28:42,360 --> 00:28:44,440 DIFFERENT ACTIVITY, NOT JUST A 845 00:28:44,440 --> 00:28:46,120 SCHOOL, NOT JUST HEALTHCARE, BUT 846 00:28:46,120 --> 00:28:49,400 ALL THE OTHER ACTIVITY, LEISURE 847 00:28:49,400 --> 00:28:51,440 ACTIVITIES, RECREATION, THAT 848 00:28:51,440 --> 00:28:52,080 NON-AUTISTIC PEOPLE EXPERIENCE. 849 00:28:52,080 --> 00:28:54,400 WE DO HAVE A DERTH OF RESEARCH 850 00:28:54,400 --> 00:28:55,840 ON THAT AND A DERTH IN SOME 851 00:28:55,840 --> 00:28:58,120 CASES OF PROMISING AND BEST 852 00:28:58,120 --> 00:29:00,280 PRACTICES AND POLICIES ON THIS 853 00:29:00,280 --> 00:29:01,960 AS FAR AS THE SUBJECT AREA, AS 854 00:29:01,960 --> 00:29:03,840 FAR AS THE HUGE AREA OF 855 00:29:03,840 --> 00:29:05,560 COMMUNITY LIVING AND THE EQUAL 856 00:29:05,560 --> 00:29:07,000 ACCESS FOR AUTISTIC PEOPLE 857 00:29:07,000 --> 00:29:07,880 THROUGHOUT ALL THESE DIFFERENT 858 00:29:07,880 --> 00:29:10,280 AREAS, INCLUDING, AS I SAY, 859 00:29:10,280 --> 00:29:12,760 LEISURE AND RECREATION AND 860 00:29:12,760 --> 00:29:13,520 INDEPENDENT LIVING SKILL 861 00:29:13,520 --> 00:29:18,040 DEVELOPMENT FOR FOLKS AND 862 00:29:18,040 --> 00:29:19,680 CHILDHOOD, ADOLESCENT AND ADULT 863 00:29:19,680 --> 00:29:21,440 LIFE, THAT NON-AUTISTIC PEOPLE 864 00:29:21,440 --> 00:29:23,080 ARE DEVELOPING THESE SKILLS. 865 00:29:23,080 --> 00:29:24,400 SOME FOLKS, BECAUSE OF BELIEFS 866 00:29:24,400 --> 00:29:25,760 ABOUT AUTISM, BELIEFS ABOUT 867 00:29:25,760 --> 00:29:27,200 CAPABILITY OR OTHER CONCERNS, 868 00:29:27,200 --> 00:29:29,840 MAY NOT BE RECEIVING THE 869 00:29:29,840 --> 00:29:31,920 SUPPORTS AND SERVICES THEY NEED, 870 00:29:31,920 --> 00:29:34,120 AND THE ABILITY TO PURSUE 871 00:29:34,120 --> 00:29:35,320 OPPORTUNITIES AND HAVE THAT FULL 872 00:29:35,320 --> 00:29:39,360 ACCESS TO COMMUNITY LIFE THAT 873 00:29:39,360 --> 00:29:41,440 THEY WANT AND FITS THEIR 874 00:29:41,440 --> 00:29:42,520 INTEREST AND SKILLS AND HELPS 875 00:29:42,520 --> 00:29:44,080 THEM ALSO WITH PURSUING 876 00:29:44,080 --> 00:29:47,240 OPPORTUNITIES AS THEY GROW OLDER 877 00:29:47,240 --> 00:29:49,320 AND AGE, AGAIN, INTO ADOLESCENCE 878 00:29:49,320 --> 00:29:50,720 AND ADULT LIFE AND LATER ADULT 879 00:29:50,720 --> 00:29:51,160 LIFE. 880 00:29:51,160 --> 00:29:53,800 SO I DON'T KNOW -- MAYBE ACL IS 881 00:29:53,800 --> 00:29:55,120 ON HERE, IF THEY WANTED TO SPEAK 882 00:29:55,120 --> 00:29:56,440 MORE ON THAT COMMUNITY LIVING 883 00:29:56,440 --> 00:30:06,640 ELEMENT. 884 00:30:06,640 --> 00:30:08,440 >> THANK YOU, SCOTT, FOR THOSE 885 00:30:08,440 --> 00:30:09,400 COMMENTS. 886 00:30:09,400 --> 00:30:11,960 DO WE HAVE ANY ADDITIONAL 887 00:30:11,960 --> 00:30:14,040 COMMENTS ABOUT EDUCATION LIKE 888 00:30:14,040 --> 00:30:15,360 ANYTHING THAT IS AN IMPORTANT 889 00:30:15,360 --> 00:30:18,400 NEED MAYBE THAT MIGHT HAVE 890 00:30:18,400 --> 00:30:19,320 EMERGED IN THE LAST FEW YEARS? 891 00:30:19,320 --> 00:30:20,800 I KNOW WITH COVID, OF COURSE, 892 00:30:20,800 --> 00:30:21,920 THERE'S SOMETHING IN THE COVID 893 00:30:21,920 --> 00:30:25,080 SECTION THAT IS ABOUT SOME 894 00:30:25,080 --> 00:30:26,160 EDUCATIONAL ISSUES THAT WERE 895 00:30:26,160 --> 00:30:30,240 RAISED DURING THE PANDEMIC, BUT 896 00:30:30,240 --> 00:30:33,800 DENA, YOU HAVE A COMMENT? 897 00:30:33,800 --> 00:30:36,360 >> JUST THE INADEQUACY OF THE 898 00:30:36,360 --> 00:30:37,600 TRANSITIONAL SUPPORT SERVICES 899 00:30:37,600 --> 00:30:40,920 CONTINUES TO PLAGUE OUR 900 00:30:40,920 --> 00:30:42,800 POPULATION. 901 00:30:42,800 --> 00:30:44,120 LACK OF MEANINGFUL POST 902 00:30:44,120 --> 00:30:49,680 SECONDARY PROGRAMS. 903 00:30:49,680 --> 00:30:51,240 THEY EITHER WANT THE TWICE 904 00:30:51,240 --> 00:30:53,720 EXCEPTIONAL GIFTED AND TALENTED, 905 00:30:53,720 --> 00:30:56,560 FORMALLY AS PROFILE STUDENTS, OR 906 00:30:56,560 --> 00:30:57,760 THEY HAVE SPECIAL PROGRAMS FOR 907 00:30:57,760 --> 00:31:00,640 PEOPLE WITH INTELLECTUAL 908 00:31:00,640 --> 00:31:01,840 DISABILITIES, BOTH WHICH ARE 909 00:31:01,840 --> 00:31:04,760 DOING WONDERFUL THINS, BUT THINT 910 00:31:04,760 --> 00:31:06,240 THERE'S A HUGE ARRAY OF PEOPLE 911 00:31:06,240 --> 00:31:07,680 WHO NEED MUCH MORE INTENSIVE 912 00:31:07,680 --> 00:31:08,960 SUPPORT BUT ARE CAPABLE OF 913 00:31:08,960 --> 00:31:11,520 ACADEMIC SERVICES, AND THERE ARE 914 00:31:11,520 --> 00:31:14,080 VERY FEW PROGRAMS THAT DO THAT. 915 00:31:14,080 --> 00:31:16,240 ALSO THE I INORDINATELY HIGH 916 00:31:16,240 --> 00:31:18,360 WORKLOAD FOR DISABILITY SUPPORT 917 00:31:18,360 --> 00:31:19,760 PERSONNEL AT ALL UNIVERSITY 918 00:31:19,760 --> 00:31:22,000 SETTINGS, BUT PARTICULARLY AT 919 00:31:22,000 --> 00:31:23,160 COMMUNITY COLLEGES. 920 00:31:23,160 --> 00:31:24,680 MANY PARENTS SEND THEIR KIDS TO 921 00:31:24,680 --> 00:31:25,760 COMMUNITY COLLEGE TO KEEP THEM 922 00:31:25,760 --> 00:31:30,480 CLOSE TO HOME, NOT REALIZING HOW 923 00:31:30,480 --> 00:31:32,040 MANY KIDS WITH IEPs OR 924 00:31:32,040 --> 00:31:33,680 STUDENTS WHO NEEDED IEPs THAT 925 00:31:33,680 --> 00:31:36,400 NEVER RECEIVED THEM ARE PART OF 926 00:31:36,400 --> 00:31:37,960 THAT COMMUNITY COLLEGE PROFILE, 927 00:31:37,960 --> 00:31:40,560 AND THE CASELOADS THERE ARE 928 00:31:40,560 --> 00:31:43,720 ASTRONOMICAL. 929 00:31:43,720 --> 00:31:45,240 SO I THINK ANYTHING WE CAN 930 00:31:45,240 --> 00:31:47,880 MENTION ABOUT THE NEEDS FOR 931 00:31:47,880 --> 00:31:49,400 LOWER RATIOS FOR THOSE 932 00:31:49,400 --> 00:31:50,200 DISABILITY SUPPORT PEOPLE WOULD 933 00:31:50,200 --> 00:31:53,120 BE REALLY HELPFUL. 934 00:31:53,120 --> 00:31:55,000 >> THANK YOU, DENA. 935 00:31:55,000 --> 00:32:00,120 MITCHELL. 936 00:32:00,120 --> 00:32:01,960 ON BEHALF OF SAMHSA, DO YOU HAVE 937 00:32:01,960 --> 00:32:02,760 ANY COMMENTS? 938 00:32:02,760 --> 00:32:03,720 I SEE YOUR HAND IS RAISED. 939 00:32:03,720 --> 00:32:05,280 >> YES, I WAS JUST GOING TO 940 00:32:05,280 --> 00:32:06,480 SUGGEST THAT IN ADDITION TO 941 00:32:06,480 --> 00:32:07,760 PUBLIC SCHOOLS, THAT PRIVATE 942 00:32:07,760 --> 00:32:11,280 SCHOOLS, COLLAR TER SC CHARTER D 943 00:32:11,280 --> 00:32:12,600 HOMESCHOOLS BE TOUCHED ON. 944 00:32:12,600 --> 00:32:14,440 I'M LOOKING AT THE NCES 945 00:32:14,440 --> 00:32:15,560 STATISTICS REPORT FROM 2019, AND 946 00:32:15,560 --> 00:32:17,840 IT LOOKS LIKE TRADITIONAL PUBLIC 947 00:32:17,840 --> 00:32:20,040 SCHOOLS HAVE ABOUT 47 MILLION 948 00:32:20,040 --> 00:32:21,880 STUDENTS BUT CHARTER SCHOOLS NOW 949 00:32:21,880 --> 00:32:24,440 HAVE 3 MILLION, HOMESCHOOLS ARE 950 00:32:24,440 --> 00:32:25,160 1.7 MILLION, AND PRIVATE SCHOOLS 951 00:32:25,160 --> 00:32:28,560 ARE ABOUT 5.8 MILLION, SO THAT'S 952 00:32:28,560 --> 00:32:29,840 STILL POTENTIALLY A SUBSTANTIAL 953 00:32:29,840 --> 00:32:31,960 NUMBER OF THOSE WITH ASD WHO ARE 954 00:32:31,960 --> 00:32:35,040 BEING EDUCATED IN NON-PUBLIC 955 00:32:35,040 --> 00:32:36,240 SCHOOL SETTINGS THAT MAY HAVE 956 00:32:36,240 --> 00:32:39,840 CHALLENGES THAT MIGHT BE WORTH 957 00:32:39,840 --> 00:32:41,560 DISCUSSING IF POSSIBLE. 958 00:32:41,560 --> 00:32:44,840 >> DO WE HAVE ANYBODY FROM 959 00:32:44,840 --> 00:32:47,720 DEPARTMENT OF ED ON TODAY? 960 00:32:47,720 --> 00:32:48,360 I DON'T THINK SO. 961 00:32:48,360 --> 00:32:50,560 WHAT ARE THE PARTICULAR ISSUES 962 00:32:50,560 --> 00:32:53,040 THAT RELATE TO PRIVATE SCHOOLS, 963 00:32:53,040 --> 00:32:54,480 CHARTER SCHOOLS AND HOME SCHOOLS 964 00:32:54,480 --> 00:32:56,200 THAT WE WOULD WANT TO MENTION IN 965 00:32:56,200 --> 00:32:57,880 THE PLAN? 966 00:32:57,880 --> 00:33:00,720 I'M NOT 100% AWARE OF WHAT IS 967 00:33:00,720 --> 00:33:07,840 NEEDED THERE. 968 00:33:07,840 --> 00:33:09,480 >> I MIGHT JUST MENTION THAT IF 969 00:33:09,480 --> 00:33:10,680 THERE ISN'T A LOT OF RESEARCH, 970 00:33:10,680 --> 00:33:13,160 JUST IF THOSE ARE SETTINGS WHERE 971 00:33:13,160 --> 00:33:15,160 MAYBE SOME PEOPLE WITH ASD ARE 972 00:33:15,160 --> 00:33:17,680 RECEIVING THEIR EDUCATION. 973 00:33:17,680 --> 00:33:19,840 I'M NOT AN EXPERT ON THAT TOPIC, 974 00:33:19,840 --> 00:33:21,520 I WOULD DEFER TO OTHERS, BUT I 975 00:33:21,520 --> 00:33:22,600 JUST THOUGHT BECAUSE IT WAS 976 00:33:22,600 --> 00:33:24,360 DISCUSSION OF PUBLIC SCHOOLS AND 977 00:33:24,360 --> 00:33:26,240 WITHOUT GETTING INTO TOO MUCH OF 978 00:33:26,240 --> 00:33:27,640 SOME OF THE POLITICS AND STUFF, 979 00:33:27,640 --> 00:33:30,240 YOU KNOW, JUST IF THERE -- IT 980 00:33:30,240 --> 00:33:31,520 MIGHT BE GOOD TO HAVE DISCUSSION 981 00:33:31,520 --> 00:33:32,560 ON THE OTHER OPTIONS TOO, IF 982 00:33:32,560 --> 00:33:33,480 THERE'S RESEARCH ON IT. 983 00:33:33,480 --> 00:33:34,080 >> OKAY. 984 00:33:34,080 --> 00:33:34,720 THANK YOU. 985 00:33:34,720 --> 00:33:37,280 I CAN ALWAYS CHECK IN WITH 986 00:33:37,280 --> 00:33:37,840 DEPARTMENT OF EDUCATION TOO 987 00:33:37,840 --> 00:33:40,000 ABOUT THAT. 988 00:33:40,000 --> 00:33:40,880 THANK YOU. 989 00:33:40,880 --> 00:33:44,120 SO PAUL. 990 00:33:44,120 --> 00:33:46,240 >> A SMALL COMMENT, SUSAN. 991 00:33:46,240 --> 00:33:48,320 I'M JUST THINKING IT'S WORTH 992 00:33:48,320 --> 00:33:52,920 TOUCHING ON AAC, AUGMENTIVE AND 993 00:33:52,920 --> 00:33:53,560 ALTERNATIVE COMMUNICATION 994 00:33:53,560 --> 00:33:54,440 MODALITIES, IF IT DOESN'T 995 00:33:54,440 --> 00:33:55,200 ALREADY TOUCH ON THAT. 996 00:33:55,200 --> 00:33:57,040 OTHER PEOPLE ON THE COMMITTEE 997 00:33:57,040 --> 00:33:58,880 WILL HAVE THOUGHT MUCH MORE 998 00:33:58,880 --> 00:33:59,640 DEEPLY ABOUT THIS. 999 00:33:59,640 --> 00:34:00,960 IF I RECALL ALSO, ONE OR TWO 1000 00:34:00,960 --> 00:34:02,200 COMMITTEE MEETINGS A I THINK WE 1001 00:34:02,200 --> 00:34:04,480 RECEIVED A NUMBER OF PUBLIC 1002 00:34:04,480 --> 00:34:05,920 COMMENTS ABOUT AAC, AND I THINK 1003 00:34:05,920 --> 00:34:07,000 IT'S IMPORTANT THAT THESE KINDS 1004 00:34:07,000 --> 00:34:08,920 OF MODALITIES BE MADE AVAILABLE, 1005 00:34:08,920 --> 00:34:11,920 ARE ACCEPTED, YOU KNOW, AND THAT 1006 00:34:11,920 --> 00:34:15,640 THE SUPPORT FOR SOMETIMES 1007 00:34:15,640 --> 00:34:18,600 EXPENSIVE EQUIPMENT IS 1008 00:34:18,600 --> 00:34:21,560 AVAILABLE. 1009 00:34:21,560 --> 00:34:22,880 >> GREAT, THANK YOU. 1010 00:34:22,880 --> 00:34:25,520 WE TOUCH ON DEVELOPMENT OF AAC 1011 00:34:25,520 --> 00:34:27,400 IN THE INTERVENTION SECTION, BUT 1012 00:34:27,400 --> 00:34:28,680 DEPLOYMENT AND HAVING ADEQUATE 1013 00:34:28,680 --> 00:34:30,320 TRAINING FOR PEOPLE TO BE ABLE 1014 00:34:30,320 --> 00:34:33,040 TO USE AAC, GETTING ACCESS TO 1015 00:34:33,040 --> 00:34:38,240 THINGS, CAN BE A PART OF CHAPTE. 1016 00:34:38,240 --> 00:34:39,400 SO THANK YOU FOR THAT. 1017 00:34:39,400 --> 00:34:41,360 DENA, DO YOU HAVE ANOTHER 1018 00:34:41,360 --> 00:34:41,600 COMMENT? 1019 00:34:41,600 --> 00:34:43,680 >> YEAH. 1020 00:34:43,680 --> 00:34:45,200 I DON'T KNOW IF IT APPEARS 1021 00:34:45,200 --> 00:34:48,120 SOMEWHERE ELSE, BUT YOU KNOW, 1022 00:34:48,120 --> 00:34:49,360 REPRODUCTIVE HEALTHCARE, I KNOW 1023 00:34:49,360 --> 00:34:51,000 WE HAVE LGBTQ STUFF COMING UP IN 1024 00:34:51,000 --> 00:34:54,600 TERMS OF DISPARITIES. 1025 00:34:54,600 --> 00:35:00,520 BUT REPRODUCTIVE HEALTHCARE AND 1026 00:35:00,520 --> 00:35:01,400 PARTICULARLY HEALTHCARE THAT 1027 00:35:01,400 --> 00:35:04,640 SPECIALIZES IN TREATMENT FOR 1028 00:35:04,640 --> 00:35:05,960 SEXUAL ASSAULT, I THINK THERE'S 1029 00:35:05,960 --> 00:35:07,280 A HUGE VOID THERE. 1030 00:35:07,280 --> 00:35:09,680 AND GIVEN THE HIGH FREAK SEAL OF 1031 00:35:09,680 --> 00:35:15,080 SEXUAL FREQUENCY OFSEXUAL ABUSE, 1032 00:35:15,080 --> 00:35:16,160 HAVING PEOPLE WHO ARE HIGHLY 1033 00:35:16,160 --> 00:35:17,120 QUALIFIED TO ADDRESS THOSE 1034 00:35:17,120 --> 00:35:18,080 THINGS FOR THIS POPULATION IS 1035 00:35:18,080 --> 00:35:20,120 REALLY IMPORTANT. 1036 00:35:20,120 --> 00:35:23,280 >> THANK YOU. 1037 00:35:23,280 --> 00:35:25,840 I THINK THERE PROBABLY MAY BE 1038 00:35:25,840 --> 00:35:26,880 MORE THAN ONE PLACE THAT WE 1039 00:35:26,880 --> 00:35:27,520 COULD FIT SOMETHING IN ABOUT 1040 00:35:27,520 --> 00:35:27,960 THAT. 1041 00:35:27,960 --> 00:35:31,160 AND THAT HAS COME TO MY 1042 00:35:31,160 --> 00:35:32,440 ATTENTION TOO, ESPECIALLY WITH 1043 00:35:32,440 --> 00:35:36,480 REGARD TO, SAY, ONLINE 1044 00:35:36,480 --> 00:35:37,360 VICTIMIZATION, THAT THERE'S A 1045 00:35:37,360 --> 00:35:38,680 NEED FOR PROFESSIONALS WHO 1046 00:35:38,680 --> 00:35:41,720 UNDERSTAND HOW TO WORK WITH 1047 00:35:41,720 --> 00:35:43,040 PEOPLE ON THE AUTISM SPECTRUM TO 1048 00:35:43,040 --> 00:35:44,320 HELP THEM THROUGH SITUATIONS 1049 00:35:44,320 --> 00:35:45,800 WHERE THEY MAY HAVE BEEN 1050 00:35:45,800 --> 00:35:49,600 VICTIMIZED IN VARIOUS WAYS. 1051 00:35:49,600 --> 00:35:51,040 SCOTT, DO YOU HAVE ANOTHER 1052 00:35:51,040 --> 00:35:51,280 COMMENT? 1053 00:35:51,280 --> 00:35:52,560 >> YEAH. 1054 00:35:52,560 --> 00:35:55,520 FIRST I WANTED TO CONCUR WITH 1055 00:35:55,520 --> 00:35:57,600 THE MENTION OF AAC, THAT I THINK 1056 00:35:57,600 --> 00:35:59,480 THERE'S A PLACE FOR THAT IN HERE 1057 00:35:59,480 --> 00:36:01,880 ON SERVICE SUPPORTS TOO FOR 1058 00:36:01,880 --> 00:36:02,760 AUGMENTIVE ALTERNATIVE 1059 00:36:02,760 --> 00:36:04,160 COMMUNICATION, AS WELL AS ACCESS 1060 00:36:04,160 --> 00:36:06,800 TO, FOR INSTANCE, SUPPORTS LIKE 1061 00:36:06,800 --> 00:36:08,640 CAPTIONING THAT CAN BE HELPFUL 1062 00:36:08,640 --> 00:36:11,160 FOR FOLKS AS COMPLEMENTING 1063 00:36:11,160 --> 00:36:13,040 PROCESSING OF INFORMATION WHEN 1064 00:36:13,040 --> 00:36:15,000 YOU MAY EXPERIENCE AUDITORY 1065 00:36:15,000 --> 00:36:16,720 PROCESSING ISSUES. 1066 00:36:16,720 --> 00:36:18,480 THERE'S LIKE NO RESEARCH AT ALL 1067 00:36:18,480 --> 00:36:22,680 ON CAPTIONING ACCESS BY AUTISTIC 1068 00:36:22,680 --> 00:36:23,520 CHILDREN, ADOLESCENTS AND 1069 00:36:23,520 --> 00:36:23,840 ADULTS. 1070 00:36:23,840 --> 00:36:26,280 AND THE AAC USE AS FAR AS 1071 00:36:26,280 --> 00:36:27,320 SUPPORTING GOOD ACCESS TO TOOLS 1072 00:36:27,320 --> 00:36:30,080 AND TECHNOLOGIES AND FRANKLY 1073 00:36:30,080 --> 00:36:32,360 PART-TIME AAC USE TOO, THAT AAC 1074 00:36:32,360 --> 00:36:33,800 USE WOULD BE OF BENEFIT, I 1075 00:36:33,800 --> 00:36:35,960 THINK, TO MILLIONS MORE AUTISTIC 1076 00:36:35,960 --> 00:36:38,840 PEOPLE IN THE UNITED STATES, 1077 00:36:38,840 --> 00:36:40,680 WORLDWIDE, SOMETIMES EVEN ON AN 1078 00:36:40,680 --> 00:36:41,800 OCCASIONAL BASIS WHERE I THINK 1079 00:36:41,800 --> 00:36:44,000 FOLKS DON'T UNDERSTAND THAT WE 1080 00:36:44,000 --> 00:36:45,720 HAVE PART-TIME AND FULL TIME 1081 00:36:45,720 --> 00:36:46,640 USERS. 1082 00:36:46,640 --> 00:36:48,240 I USE AAC SOMETIMES MYSELF, AND 1083 00:36:48,240 --> 00:36:50,840 I THINK THAT WE NEED MORE 1084 00:36:50,840 --> 00:36:52,040 RESEARCH ON THAT, WE NEED TO 1085 00:36:52,040 --> 00:36:53,920 EMBED THAT MORE IN PRACTICES AND 1086 00:36:53,920 --> 00:36:55,480 POLICIES, THAT THERE'S A 1087 00:36:55,480 --> 00:36:59,080 SPECTRUM OF -- IF YOU WILL, OF 1088 00:36:59,080 --> 00:37:01,360 A AC TOOLS AND SUPPORTS AND 1089 00:37:01,360 --> 00:37:02,480 ACCESS, HIGH-TECH AND LOW TECH, 1090 00:37:02,480 --> 00:37:04,320 THAT IT CAN BE OF GREAT BENEFIT 1091 00:37:04,320 --> 00:37:05,640 TO MANY AUTISTIC PEOPLE, 1092 00:37:05,640 --> 00:37:07,080 INCLUDING FOLKS WHO OTHERWISE 1093 00:37:07,080 --> 00:37:10,360 ARE OFTEN SPEAKING WOULD FIND 1094 00:37:10,360 --> 00:37:11,920 BETTER ACCESS TO AAC AND 1095 00:37:11,920 --> 00:37:13,200 TRAINING ON AAC TOOLS AND 1096 00:37:13,200 --> 00:37:14,480 TECHNOLOGIES TO BE ABLE TO BE -- 1097 00:37:14,480 --> 00:37:15,800 AND SYSTEMS TO HELP THEM AND 1098 00:37:15,800 --> 00:37:17,000 SUPPORT BETTER COMMUNICATION 1099 00:37:17,000 --> 00:37:18,400 ACCESS IN SCHOOL, WORK, 1100 00:37:18,400 --> 00:37:20,840 COMMUNITY LIVING, HEALTHCARE. 1101 00:37:20,840 --> 00:37:22,240 I ALSO FORGOT TO MENTION, AND 1102 00:37:22,240 --> 00:37:23,800 YOU DON'T HAVE THIS IN HERE 1103 00:37:23,800 --> 00:37:24,880 PROBABLY PARTLY BECAUSE YOU MAY 1104 00:37:24,880 --> 00:37:26,400 NOT BE AWARE OF THE RESEARCH 1105 00:37:26,400 --> 00:37:28,160 THAT'S JUST BEEN -- IT'S BEING 1106 00:37:28,160 --> 00:37:31,000 PUBLISHED RIGHT NOW RECENTLY. 1107 00:37:31,000 --> 00:37:32,200 WE'RE STARTING TO NOW HAVE DATA 1108 00:37:32,200 --> 00:37:34,400 ON THE SERVICES CLIFF FOR -- AND 1109 00:37:34,400 --> 00:37:36,920 I THINK IT FITS WELL INTO THE 1110 00:37:36,920 --> 00:37:38,040 EDUCATIONAL SYSTEM MENTIONED 1111 00:37:38,040 --> 00:37:39,960 HERE, FOR INSTANCE, IN K-12, IS 1112 00:37:39,960 --> 00:37:42,280 THE SERVICES CLIFF IS THE 1113 00:37:42,280 --> 00:37:44,680 DROPOFF ON ACCESS FOR AUTISTIC 1114 00:37:44,680 --> 00:37:47,560 PEOPLE AS KIDS AND ADOLESCENTS 1115 00:37:47,560 --> 00:37:49,920 TO OCCUPATIONAL THERAPY AND 1116 00:37:49,920 --> 00:37:51,240 SPEECH AND LANGUAGE THERAPY AND 1117 00:37:51,240 --> 00:37:52,800 LEARNING SUPPORTS AND OTHER 1118 00:37:52,800 --> 00:37:55,840 SUPPORTS LIKE THAT. 1119 00:37:55,840 --> 00:37:59,880 THERE IS A HUGE, HUGE DROPOFF 1120 00:37:59,880 --> 00:38:00,560 AFTER PRIMARY SCHOOL, IS THAT 1121 00:38:00,560 --> 00:38:01,680 MANY OF US, AND THIS WAS THE 1122 00:38:01,680 --> 00:38:03,280 CASE FOR ME, I RECEIVED 1123 00:38:03,280 --> 00:38:07,440 OCCUPATIONAL THERAPY AS A KID IN 1124 00:38:07,440 --> 00:38:08,960 PRIMARY SCHOOL FROM FIFTH GRADE 1125 00:38:08,960 --> 00:38:10,720 ALL THE WAY THROUGH -- SORRY, 1126 00:38:10,720 --> 00:38:12,120 FROM FIRST GRADE ALL THE WAY 1127 00:38:12,120 --> 00:38:13,760 THROUGH FIFTH GRADE, AND DID NOT 1128 00:38:13,760 --> 00:38:15,080 RECEIVE IT IN MIDDLE SCHOOL OR 1129 00:38:15,080 --> 00:38:16,080 HIGH SCHOOL AND HAVE NOT 1130 00:38:16,080 --> 00:38:18,160 RECEIVED IT AS AN ADULT AS WELL. 1131 00:38:18,160 --> 00:38:20,120 WE DON'T HAVE GOOD TRAINING FOR 1132 00:38:20,120 --> 00:38:22,640 O.T.s AND SPEECH AND LANGUAGE 1133 00:38:22,640 --> 00:38:24,000 THERAPISTS AND OTHER HUMAN 1134 00:38:24,000 --> 00:38:25,600 SERVICES SPECIALISTS ON AUTISM 1135 00:38:25,600 --> 00:38:27,640 AS MUCH IN TERMS OF THE 1136 00:38:27,640 --> 00:38:28,720 EMERGENCE OF WHAT WE'VE HAD IN 1137 00:38:28,720 --> 00:38:29,840 THE RESEARCH LITERATURE AND 1138 00:38:29,840 --> 00:38:32,360 KEEPING PACE WITH THAT, AND 1139 00:38:32,360 --> 00:38:34,440 EMPOWERING FOLKS FOR ACCESS AND 1140 00:38:34,440 --> 00:38:35,520 BEST PRACTICES FOR SUPPORTS AND 1141 00:38:35,520 --> 00:38:36,640 STRATEGIES, AND MAKING SURE THAT 1142 00:38:36,640 --> 00:38:38,840 IT'S BEING FUNDED, I THINK IS 1143 00:38:38,840 --> 00:38:40,680 REALLY IMPORTANT AND THE SERVICE 1144 00:38:40,680 --> 00:38:42,000 SYSTEMS ARE PRIORITIZING THAT, 1145 00:38:42,000 --> 00:38:45,840 BECAUSE I THINK THESE SPECIALIST 1146 00:38:45,840 --> 00:38:48,000 SOPs, SPEECH AND LANGUAGE 1147 00:38:48,000 --> 00:38:49,360 PATHOLOGISTS AND OCCUPATIONAL 1148 00:38:49,360 --> 00:38:51,720 THERAPY PRACTITIONERS AND OTHER 1149 00:38:51,720 --> 00:38:53,600 SOCIAL WORKERS, OTHER HUMAN 1150 00:38:53,600 --> 00:38:56,800 SERVICES SPECIALISTS SHOULD BE 1151 00:38:56,800 --> 00:38:59,280 SUPPORTING AUTISTIC PEOPLE 1152 00:38:59,280 --> 00:39:00,600 THROUGHOUT K-12 AND BEYOND, AND 1153 00:39:00,600 --> 00:39:03,240 THAT SHOULD BE PART OF FOLKS' 1154 00:39:03,240 --> 00:39:07,280 IEPs AND REHAB ACT 504 1155 00:39:07,280 --> 00:39:08,560 PLANS, AND IT JUST NOT 1156 00:39:08,560 --> 00:39:10,000 HAPPENING. 1157 00:39:10,000 --> 00:39:11,360 BECAUSE WE SEE THAT DROPOFF IN 1158 00:39:11,360 --> 00:39:12,280 THE NUMBERS. 1159 00:39:12,280 --> 00:39:13,600 I BELIEVE AN ARTICLE HAS JUST 1160 00:39:13,600 --> 00:39:14,720 RECENTLY BEEN PUBLISHED, I'LL 1161 00:39:14,720 --> 00:39:19,200 SEAL IF ISEE IF I CAN GET YOU TE 1162 00:39:19,200 --> 00:39:21,280 ARTICLES, SHOWING HOW MUCH THE 1163 00:39:21,280 --> 00:39:23,680 NUMBERS DECREASE SUBSTANTIALLY 1164 00:39:23,680 --> 00:39:24,960 BY SECOND DI SCHOOL, THEN WHEN 1165 00:39:24,960 --> 00:39:27,280 YOU HIT ADULT LIFE, ACCESS TO 1166 00:39:27,280 --> 00:39:28,320 O.T., SPEECH AND LANGUAGE 1167 00:39:28,320 --> 00:39:30,240 THERAPY IS ALMOST NON-EXISTENT 1168 00:39:30,240 --> 00:39:30,880 AT THAT POINT. 1169 00:39:30,880 --> 00:39:31,760 SO IT'S SOMETHING THAT REALLY 1170 00:39:31,760 --> 00:39:33,280 NEEDS TO BE ADDRESSED AND WOULD 1171 00:39:33,280 --> 00:39:34,600 MAKE A HUGE DIFFERENCE, I THINK, 1172 00:39:34,600 --> 00:39:37,040 IN QUALITY OF LIFE AND HEALTH 1173 00:39:37,040 --> 00:39:39,080 AND WELLNESS FOR FOLKS. 1174 00:39:39,080 --> 00:39:41,880 AND IT IS SUPPORTED BY FLSHES AE 1175 00:39:41,880 --> 00:39:43,760 AS WELL, BUT OFTEN THERE'S A 1176 00:39:43,760 --> 00:39:44,600 DERTH OF SERVICE PROVIDERS AT 1177 00:39:44,600 --> 00:39:47,840 TIMES FOR OUTSIDE PRIVATE ACCESS 1178 00:39:47,840 --> 00:39:48,920 TO OCCUPATIONAL THERAPY AND 1179 00:39:48,920 --> 00:39:53,320 SPEECH AND LANGUAGE THERAPY, AND 1180 00:39:53,320 --> 00:39:54,760 SOME METRO AREAS AND RURAL AND 1181 00:39:54,760 --> 00:39:57,280 SUBURBAN AREAS MAY NOT HAVE GOOD 1182 00:39:57,280 --> 00:39:58,360 ACCESS TO PROVIDERS. 1183 00:39:58,360 --> 00:39:59,960 I KNOW, FOR INSTANCE, HERE IN 1184 00:39:59,960 --> 00:40:03,600 THE D.C. METRO AREA, THERE'S 1185 00:40:03,600 --> 00:40:05,600 ONLY I THINK FOUR OR FIVE 1186 00:40:05,600 --> 00:40:06,800 O.T.s, FOR INSTANCE, THAT TAKE 1187 00:40:06,800 --> 00:40:07,880 MY HEALTH INSURANCE, AND MOST OF 1188 00:40:07,880 --> 00:40:09,000 THEM -- AND I KNOW SOME OF THIS 1189 00:40:09,000 --> 00:40:12,040 MAY END UP BLEEDING INTO 1190 00:40:12,040 --> 00:40:13,360 QUESTION 6 INSTEAD OF 5, BUT 1191 00:40:13,360 --> 00:40:15,200 SOME OF THEM DON'T SPECIALIZE IN 1192 00:40:15,200 --> 00:40:17,280 COGNITIVE DISABILITIES AND 1193 00:40:17,280 --> 00:40:18,160 EXECUTIVE FUNCTIONING AND ONLY 1194 00:40:18,160 --> 00:40:19,520 DO MORE MOTOR THINGS AND MAY NOT 1195 00:40:19,520 --> 00:40:23,920 BE ABLE TO HELP WITH SENSORY, 1196 00:40:23,920 --> 00:40:26,040 AND INDEPENDENT LIVING ASPECTS 1197 00:40:26,040 --> 00:40:27,760 THAT O.T.s SHOULD BE ABLE TO 1198 00:40:27,760 --> 00:40:28,720 HELP OUT WITH AS A FIELD. 1199 00:40:28,720 --> 00:40:31,160 FOR INSTANCE, SLPs WITH 1200 00:40:31,160 --> 00:40:32,480 COMMUNICATION ACCESS INCLUDING 1201 00:40:32,480 --> 00:40:32,800 ACUs. 1202 00:40:32,800 --> 00:40:34,160 THERE'S A LOT OF O.T.s THAT 1203 00:40:34,160 --> 00:40:37,320 ARE REALLY EXTENSIVELY TRAINED 1204 00:40:37,320 --> 00:40:38,960 IN ACUs AND SHOULD BE 1205 00:40:38,960 --> 00:40:39,840 SUPPORTING EMPOWERMENT AND 1206 00:40:39,840 --> 00:40:42,800 ACCESS TO ACUs FOR AUTISTIC 1207 00:40:42,800 --> 00:40:43,840 PEOPLE FROM DIFFERENT 1208 00:40:43,840 --> 00:40:45,640 BACKGROUNDS ACROSS THE LIFESPAN. 1209 00:40:45,640 --> 00:40:47,480 INCLUDING CHILDHOOD -- 1210 00:40:47,480 --> 00:40:48,480 >> THAT WOULD BE GREAT, IF YOU 1211 00:40:48,480 --> 00:40:49,760 WANT TO SEND THAT REFERENCE. 1212 00:40:49,760 --> 00:40:53,280 I KNOW THAT THE SERVICES CLIFF 1213 00:40:53,280 --> 00:40:55,360 WAS A TOPIC OF A DREXEL AUTISM 1214 00:40:55,360 --> 00:40:57,680 INDICATORS REPORT A FEW YEARS 1215 00:40:57,680 --> 00:40:58,960 AGO THAT WAS QUITE SIGNIFICANT 1216 00:40:58,960 --> 00:41:00,720 AND BROUGHT THAT TO A LOT OF 1217 00:41:00,720 --> 00:41:01,760 PEOPLE'S ATTENTION, BUT IT WOULD 1218 00:41:01,760 --> 00:41:03,360 BE GREAT TO HEAR THE LATEST ON 1219 00:41:03,360 --> 00:41:04,440 THIS, SO THAT WOULD BE VERY 1220 00:41:04,440 --> 00:41:04,680 HELPFUL. 1221 00:41:04,680 --> 00:41:09,000 THANK YOU. 1222 00:41:09,000 --> 00:41:10,000 JULIE, DO YOU HAVE SOME 1223 00:41:10,000 --> 00:41:10,280 COMMENTS? 1224 00:41:10,280 --> 00:41:11,760 >> JUST A QUICK COMMENT TO PIGGY 1225 00:41:11,760 --> 00:41:13,200 BACK ON WHAT SCOTT WAS JUST 1226 00:41:13,200 --> 00:41:13,520 SAYING. 1227 00:41:13,520 --> 00:41:14,600 I'LL SEND YOU A PAPER THAT CAME 1228 00:41:14,600 --> 00:41:16,360 OUT LAST YEAR THAT SHOWS THAT 1229 00:41:16,360 --> 00:41:19,200 THE SERVICE CLIFF LOOKS PRETTY 1230 00:41:19,200 --> 00:41:20,200 DIFFERENT FOR AUTISTIC PEOPLE 1231 00:41:20,200 --> 00:41:22,360 WHO DO AND DO NOT HAVE AN 1232 00:41:22,360 --> 00:41:23,040 INTELLECTUAL DISABILITY 1233 00:41:23,040 --> 00:41:24,560 ACTUALLY, AND FOR PEOPLE THAT DO 1234 00:41:24,560 --> 00:41:26,520 HAVE AN INTELLECTUAL DISABILITY, 1235 00:41:26,520 --> 00:41:27,400 IT LOOKS SORT OF LIKE THE 1236 00:41:27,400 --> 00:41:28,400 SERVICE CLIFF WE TEND TO THINK 1237 00:41:28,400 --> 00:41:30,040 OF WITH THE BIG DROPOFF, BUT 1238 00:41:30,040 --> 00:41:31,680 WHEN PEOPLE DON'T HAVE AN 1239 00:41:31,680 --> 00:41:32,480 INTELLECTUAL DISABILITY, WE 1240 00:41:32,480 --> 00:41:34,080 THINK OF IT AS KIND OF LIKE A 1241 00:41:34,080 --> 00:41:35,600 SERVICE SLOPE WHERE THEY START 1242 00:41:35,600 --> 00:41:36,720 LOSING ACCESS TO SERVICES YEAR 1243 00:41:36,720 --> 00:41:39,120 BY YEAR WHILE THEY'RE IN HIGH 1244 00:41:39,120 --> 00:41:40,400 SCHOOL, AND THEN THAT DROPOFF 1245 00:41:40,400 --> 00:41:41,720 DOESN'T LOOK AT DISTINCT WHEN 1246 00:41:41,720 --> 00:41:43,160 THEY LEAVE HIGH SCHOOL BECAUSE 1247 00:41:43,160 --> 00:41:44,080 THEY'VE ALREADY LOST QUITE A FEW 1248 00:41:44,080 --> 00:41:45,560 OF THE SERVICES THAT THEY HAD 1249 00:41:45,560 --> 00:41:47,080 BEEN GETTING EARLIER. 1250 00:41:47,080 --> 00:41:48,520 SO I DON'T KNOW HOW THAT FACTORS 1251 00:41:48,520 --> 00:41:51,240 INTO THIS, BUT SCOTT'S 1252 00:41:51,240 --> 00:41:52,640 EXPERIENCE IN WHAT HE'S SEEN IS 1253 00:41:52,640 --> 00:41:54,400 SIMILAR TO WHAT WE'VE SEEN AS 1254 00:41:54,400 --> 00:41:54,600 WELL. 1255 00:41:54,600 --> 00:41:55,720 I'D BE HAPPY TO SEND THAT ALONG. 1256 00:41:55,720 --> 00:41:56,160 >> GREAT. 1257 00:41:56,160 --> 00:41:58,120 THAT WOULD BE REALLY HELPFUL. 1258 00:41:58,120 --> 00:41:59,240 THANKS, JULIE. 1259 00:41:59,240 --> 00:42:00,320 IVANOVA? 1260 00:42:00,320 --> 00:42:03,280 >> HELLO, THIS IS IVANOVA. 1261 00:42:03,280 --> 00:42:07,320 I JUST WANTED TO CHECK THAT 1262 00:42:07,320 --> 00:42:09,600 DENTISTRY UNDER HEALTHCARE 1263 00:42:09,600 --> 00:42:09,960 SYSTEMS? 1264 00:42:09,960 --> 00:42:11,040 BECAUSE THERE'S A LOT OF 1265 00:42:11,040 --> 00:42:12,480 AUTISTIC PEOPLE THAT DON'T HAVE 1266 00:42:12,480 --> 00:42:16,840 ACCESS TO DENTISTRY AND GOOD 1267 00:42:16,840 --> 00:42:18,160 DENTAL CARE, AND THAT DOES 1268 00:42:18,160 --> 00:42:18,920 AFFECT OUR HEALTH. 1269 00:42:18,920 --> 00:42:20,320 SO I JUST WANTED TO MAKE SURE 1270 00:42:20,320 --> 00:42:22,080 THAT THAT'S BEING LOOKED AT 1271 00:42:22,080 --> 00:42:24,320 UNDER THE HEALTHCARE SYSTEMS. 1272 00:42:24,320 --> 00:42:24,800 THANK YOU. 1273 00:42:24,800 --> 00:42:25,920 >> THANK YOU. 1274 00:42:25,920 --> 00:42:30,400 ACTUALLY, IN THE IACC, WE 1275 00:42:30,400 --> 00:42:31,400 INCLUDED DENTAL HEALTH IN ONE OF 1276 00:42:31,400 --> 00:42:34,440 THE OBJECTIVES OF AN EARLY 1277 00:42:34,440 --> 00:42:35,760 STRATEGIC PLAN, THANKS TO ONE OF 1278 00:42:35,760 --> 00:42:37,400 OUR MEMBERS WHO WAS A CHAMPION 1279 00:42:37,400 --> 00:42:38,800 OF THAT. 1280 00:42:38,800 --> 00:42:39,960 AND ACTUALLY THERE ARE PROGRAMS 1281 00:42:39,960 --> 00:42:42,440 NOW TO TRAIN DENTISTS IN HOW TO 1282 00:42:42,440 --> 00:42:43,960 HELP PEOPLE ON THE AUTISM 1283 00:42:43,960 --> 00:42:44,440 SPECTRUM. 1284 00:42:44,440 --> 00:42:46,720 I THINK THE IACC DESERVES SOME 1285 00:42:46,720 --> 00:42:47,920 CREDIT FOR HAVING HELPED WITH 1286 00:42:47,920 --> 00:42:48,440 THAT. 1287 00:42:48,440 --> 00:42:49,640 BUT IT'S CERTAINLY GOOD TO 1288 00:42:49,640 --> 00:42:51,000 MENTION IN THE CONTEXT OF 1289 00:42:51,000 --> 00:42:51,280 HEALTHCARE. 1290 00:42:51,280 --> 00:42:55,440 SO THANK YOU. 1291 00:42:55,440 --> 00:42:56,240 DENA. 1292 00:42:56,240 --> 00:42:58,280 >> TO PIGGY BACK ON WHAT IVANOVA 1293 00:42:58,280 --> 00:43:00,400 JUST SAID, I'D LIKE TO POINT OUT 1294 00:43:00,400 --> 00:43:02,480 THAT EVEN WHERE THERE IS DENTAL 1295 00:43:02,480 --> 00:43:04,080 CARE, IT USUALLY DOESN'T INCLUDE 1296 00:43:04,080 --> 00:43:05,080 COSMETIC DENTISTRY. 1297 00:43:05,080 --> 00:43:07,520 AND FOR PEOPLE WHO ARE ALREADY 1298 00:43:07,520 --> 00:43:11,120 STRUGGLING WITH SOCIAL 1299 00:43:11,120 --> 00:43:13,600 ENGAGEMENT, JUST KEEPING TEETH 1300 00:43:13,600 --> 00:43:15,920 HEALTHY MAY NOT BE SUFFICIENT. 1301 00:43:15,920 --> 00:43:17,760 MY SON IS MISSING 13 PERMANENT 1302 00:43:17,760 --> 00:43:18,200 TEETH. 1303 00:43:18,200 --> 00:43:21,200 AND IF WE HAD NOT BEEN ABLE TO 1304 00:43:21,200 --> 00:43:23,160 AFFORD COSMETIC DENTISTRY FOR 1305 00:43:23,160 --> 00:43:26,000 HIM, HE WOULD HAVE LOOKED VERY, 1306 00:43:26,000 --> 00:43:29,240 I DON'T KNOW -- PEOPLE TREAT 1307 00:43:29,240 --> 00:43:31,560 PEOPLE WITH BAD DENTISTRY 1308 00:43:31,560 --> 00:43:31,840 INHUMANELY. 1309 00:43:31,840 --> 00:43:33,480 AND IT'S A VERY HUGE SOCIAL 1310 00:43:33,480 --> 00:43:35,680 THING. 1311 00:43:35,680 --> 00:43:38,320 I DID ALSO WANT TO -- WHAT WAS 1312 00:43:38,320 --> 00:43:39,440 THE OTHER THING I WANTED TO 1313 00:43:39,440 --> 00:43:44,920 BRING UP? 1314 00:43:44,920 --> 00:43:46,360 I WANTED TO ALSO TALK ABOUT IN 1315 00:43:46,360 --> 00:43:47,640 THE EDUCATION SYSTEM, AND THIS 1316 00:43:47,640 --> 00:43:49,360 MAY BELONG SOMEWHERE ELSE, I WAS 1317 00:43:49,360 --> 00:43:52,360 SHOCKED TO FIND OUT THAT UNDER 1318 00:43:52,360 --> 00:43:55,000 504 PLANS, THEY DON'T 1319 00:43:55,000 --> 00:43:56,480 NECESSARILY ACKNOWLEDGE THE 1320 00:43:56,480 --> 00:43:58,760 DIAGNOSIS. 1321 00:43:58,760 --> 00:44:00,560 SO WHEN YOU'RE DOING A 1322 00:44:00,560 --> 00:44:01,440 SCHOOL-BASED COUNT FOR THE 1323 00:44:01,440 --> 00:44:04,600 NUMBER OF STUDENTS WHO HAVE 1324 00:44:04,600 --> 00:44:06,880 EDUCATIONAL PLANS FOR AUTISM, IT 1325 00:44:06,880 --> 00:44:08,080 WILL USUALLY ONLY INCLUDE KIDS 1326 00:44:08,080 --> 00:44:10,160 WITH IEPs, AND THAT MEANS 1327 00:44:10,160 --> 00:44:11,480 WE'RE MISSING A HUGE NUMBER OF 1328 00:44:11,480 --> 00:44:15,200 PEOPLE. 1329 00:44:15,200 --> 00:44:20,360 AND NOT TOO MUCH OF A FINE POINT 1330 00:44:20,360 --> 00:44:23,320 ON WHAT JULIE SAID, PEOPLE WITH 1331 00:44:23,320 --> 00:44:24,280 INTELLECTUAL DISABILITIES 1332 00:44:24,280 --> 00:44:25,160 USUALLY HAVE INCORPORATED INTO 1333 00:44:25,160 --> 00:44:27,360 THEIR SCHOOL DAYS VERY SPECIFIC 1334 00:44:27,360 --> 00:44:28,640 TIMES TO ACQUIRE THOSE 1335 00:44:28,640 --> 00:44:29,840 INDEPENDENT LIVING SKILLS. 1336 00:44:29,840 --> 00:44:30,960 THEY ACTUALLY HAVE HIGHER RATES 1337 00:44:30,960 --> 00:44:33,120 OF AT LEAST PART-TIME EMPLOYMENT 1338 00:44:33,120 --> 00:44:36,240 THAN PEOPLE WITHOUT INTELLECTUAL 1339 00:44:36,240 --> 00:44:37,000 DISABILITY, BECAUSE PEOPLE 1340 00:44:37,000 --> 00:44:39,360 WITHOUT I.D. ARE IN ACADEMICS 1341 00:44:39,360 --> 00:44:41,560 ALL DAY LONG, AND THEY GET NO 1342 00:44:41,560 --> 00:44:42,680 OPPORTUNITY TO LEARN ANY 1343 00:44:42,680 --> 00:44:44,720 INDEPENDENT LIVING SKILLS. 1344 00:44:44,720 --> 00:44:47,120 WE'VE EVEN GOTTEN RID OF HOME 1345 00:44:47,120 --> 00:44:48,080 ECONOMICS, SO THERE'S REALLY 1346 00:44:48,080 --> 00:44:50,200 LIKE NO PLACE FOR TO HAPPEN. 1347 00:44:50,200 --> 00:44:51,840 SO YOU KNOW, IF I WERE THE QUEEN 1348 00:44:51,840 --> 00:44:54,040 OF EVERYTHING, THEY WOULD HAVE 1349 00:44:54,040 --> 00:44:55,560 LONGER SCHOOL LIFETIME, THEY 1350 00:44:55,560 --> 00:44:57,760 WOULD BE IN UNTIL 21, AND HALF 1351 00:44:57,760 --> 00:44:59,400 OF THE DAY WOULD BE SPENT ON 1352 00:44:59,400 --> 00:45:01,360 WORK SKILLS AND INDEPENDENT 1353 00:45:01,360 --> 00:45:02,240 LIVING SKILLS, BUT THAT'S NOT 1354 00:45:02,240 --> 00:45:03,600 HOW THINGS ARE STRUCTURED, 1355 00:45:03,600 --> 00:45:06,400 THAT'S NOT WHAT THE UNIONS WILL 1356 00:45:06,400 --> 00:45:08,160 ALLOW, BUT YOU KNOW, THAT'S JUST 1357 00:45:08,160 --> 00:45:09,440 A HUGE GAP. 1358 00:45:09,440 --> 00:45:11,520 THAT'S PART OF WHY WE SEE SO 1359 00:45:11,520 --> 00:45:13,280 MANY KIDS NOT MAKE IT PAST THEIR 1360 00:45:13,280 --> 00:45:15,360 FRESHMAN YEAR, EVEN IN A 1361 00:45:15,360 --> 00:45:17,560 PART-TIME POST SECONDARY PROGRAM 1362 00:45:17,560 --> 00:45:18,760 BECAUSE THEY DON'T HAVE THE 1363 00:45:18,760 --> 00:45:21,280 SKILLS TO FUNCTION WITHOUT 1364 00:45:21,280 --> 00:45:22,040 PROMPTING, CONSTANT PROMPTING. 1365 00:45:22,040 --> 00:45:23,240 SO I JUST WANTED TO ADD THAT TO 1366 00:45:23,240 --> 00:45:26,320 THE LIST. 1367 00:45:26,320 --> 00:45:27,960 >> THANK YOU. 1368 00:45:27,960 --> 00:45:29,160 THANK YOU FOR BRINGING THAT UP. 1369 00:45:29,160 --> 00:45:30,360 I'M GOING TO MAKE A SMOOTH 1370 00:45:30,360 --> 00:45:31,760 TRANSITION INTO QUESTION 6 AS 1371 00:45:31,760 --> 00:45:33,200 WE'VE ALREADY BEEN TALKING ABOUT 1372 00:45:33,200 --> 00:45:34,720 SOME THINGS THAT ARE COVERED IN 1373 00:45:34,720 --> 00:45:36,600 QUESTION 6. 1374 00:45:36,600 --> 00:45:40,080 SO QUESTION 6 IS THE LIFESPAN 1375 00:45:40,080 --> 00:45:41,720 ISSUES QUESTION, AND THE WAY THE 1376 00:45:41,720 --> 00:45:43,440 QUESTION IS WORDED CURRENTLY IS, 1377 00:45:43,440 --> 00:45:44,880 HOW CAN WE MEET THE NEEDS OF 1378 00:45:44,880 --> 00:45:46,200 PEOPLE ON THE AUTISM SPECTRUM 1379 00:45:46,200 --> 00:45:51,320 THROUGHOUT THE LIFESPAN? 1380 00:45:51,320 --> 00:45:52,880 AND THE TOPICS THAT ARE IN THIS 1381 00:45:52,880 --> 00:45:54,840 QUESTION ARE: TRANSITION TO 1382 00:45:54,840 --> 00:45:55,920 ADULTHOOD. 1383 00:45:55,920 --> 00:45:57,240 ADULT SERVICES AND SUPPORTS, 1384 00:45:57,240 --> 00:45:59,200 INCLUDING POST SECONDARY 1385 00:45:59,200 --> 00:46:01,600 EDUCATION, EMPLOYMENT, HOUSING, 1386 00:46:01,600 --> 00:46:04,480 TRANSPORTATION AND OTHER 1387 00:46:04,480 --> 00:46:05,920 SERVICES. 1388 00:46:05,920 --> 00:46:07,840 ADULT DIAGNOSIS. 1389 00:46:07,840 --> 00:46:10,240 ADULT HEALTH AND WELL-BEING. 1390 00:46:10,240 --> 00:46:12,440 SERVICE DELIVERY FOR ADULTS. 1391 00:46:12,440 --> 00:46:15,200 COMMUNITY INTEGRATION. 1392 00:46:15,200 --> 00:46:16,480 SERVICES AND SUPPORTS FOR ADULTS 1393 00:46:16,480 --> 00:46:19,560 WITH HIGH SUPPORT NEEDS. 1394 00:46:19,560 --> 00:46:22,640 OLDER ADULTHOOD IN AUTISM. 1395 00:46:22,640 --> 00:46:24,080 JUSTICE, SAFETY, EMERGENCY 1396 00:46:24,080 --> 00:46:27,640 PREPAREDNESS AND PREMATURE 1397 00:46:27,640 --> 00:46:27,920 MORTALITY. 1398 00:46:27,920 --> 00:46:28,880 AND INCLUSION OF LIVED 1399 00:46:28,880 --> 00:46:30,160 EXPERIENCES IN RESEARCH, 1400 00:46:30,160 --> 00:46:32,280 SERVICES AND POLICY. 1401 00:46:32,280 --> 00:46:33,680 SO THOSE ARE SOME OF THE TOPICS 1402 00:46:33,680 --> 00:46:36,520 THAT ARE INCLUDED IN THIS 1403 00:46:36,520 --> 00:46:37,720 QUESTION, BUT LIKE ALL THE 1404 00:46:37,720 --> 00:46:41,160 OTHERS, ARE THERE OTHER TOPICS 1405 00:46:41,160 --> 00:46:42,560 THAT WE WANT TO INCLUDE HERE OR 1406 00:46:42,560 --> 00:46:44,720 ANYTHING THAT YOU WANT TO 1407 00:46:44,720 --> 00:46:45,480 HIGHLIGHT UNDER SOME OF THE 1408 00:46:45,480 --> 00:46:47,360 TOPICS I'VE JUST MENTIONED, OR 1409 00:46:47,360 --> 00:46:48,800 HAVE THERE BEEN SOME RECENT 1410 00:46:48,800 --> 00:46:49,960 SIGNIFICANT CHANGES IN THE FIELD 1411 00:46:49,960 --> 00:46:51,600 THAT SHOULD BE REFLECTED IN THE 1412 00:46:51,600 --> 00:46:55,240 STRATEGIC PLAN IN TERMS OF 1413 00:46:55,240 --> 00:46:56,440 SHAPING OUR DIRECTION. 1414 00:46:56,440 --> 00:47:01,680 SO I WILL GO TO IVANOVA SMITH. 1415 00:47:01,680 --> 00:47:04,400 >> I THINK IT WOULD BE GOOD TO 1416 00:47:04,400 --> 00:47:08,920 HAVE AUTISTIC PARENTING OR 1417 00:47:08,920 --> 00:47:09,840 PARENTING -- SUPPORTING PARENTS 1418 00:47:09,840 --> 00:47:14,480 THAT ARE AUTISTIC, AUTISTIC 1419 00:47:14,480 --> 00:47:18,080 PARENTS, OR SUPPORTED AUTISTIC 1420 00:47:18,080 --> 00:47:22,120 FAMILIES. 1421 00:47:22,120 --> 00:47:25,840 LIKE THE FATHER IS AUTISTIC AND 1422 00:47:25,840 --> 00:47:27,160 THEN THE KID IS AUTISTIC BUT 1423 00:47:27,160 --> 00:47:28,600 MAYBE THE MOM ISN'T, YOU KNOW, 1424 00:47:28,600 --> 00:47:30,000 LIKE THAT KIND OF SITUATION 1425 00:47:30,000 --> 00:47:35,480 WHERE, LIKE, IT'S A 1426 00:47:35,480 --> 00:47:36,320 MULTI-AUTISTIC FAMILY AND 1427 00:47:36,320 --> 00:47:38,440 SUPPORTING THOSE FAMILIES. 1428 00:47:38,440 --> 00:47:39,960 >> THANK YOU. 1429 00:47:39,960 --> 00:47:42,040 YES, AND WE DO HAVE SOMETHING 1430 00:47:42,040 --> 00:47:45,640 ABOUT CAREGIVING IN QUESTION 5, 1431 00:47:45,640 --> 00:47:47,960 BUT THE THOUGHT ABOUT PARENTS 1432 00:47:47,960 --> 00:47:49,680 THAT MAY BE ON THE SPECTRUM OR 1433 00:47:49,680 --> 00:47:51,440 HAVE OTHER KINDS OF CHALLENGES 1434 00:47:51,440 --> 00:47:52,400 IS NOT SPECIFICALLY MENTIONED 1435 00:47:52,400 --> 00:47:53,960 RIGHT NOW, SO THAT COULD BE 1436 00:47:53,960 --> 00:47:56,040 ADDED INTO THAT. 1437 00:47:56,040 --> 00:47:57,240 WE'LL GO TO JENNIFER JOHNSON 1438 00:47:57,240 --> 00:48:07,320 NEXT. 1439 00:48:13,160 --> 00:48:16,720 GENERAL FJENNIFER, IT LOOKS LIKE 1440 00:48:16,720 --> 00:48:17,920 UNMUTED BUT I DON'T KNOW IF YOU 1441 00:48:17,920 --> 00:48:20,200 MIGHT BE HAVING SOME SORT OF 1442 00:48:20,200 --> 00:48:24,360 COMPUTER ISSUE. 1443 00:48:24,360 --> 00:48:26,120 WHY DON'T I COME BACK TO YOU, 1444 00:48:26,120 --> 00:48:29,280 AND IF YOU NEED HELP, YOU CAN 1445 00:48:29,280 --> 00:48:30,600 TEXT OUR TEAM AND PEOPLE CAN TRY 1446 00:48:30,600 --> 00:48:32,640 TO HELP YOU OUT. 1447 00:48:32,640 --> 00:48:38,800 ALYCIA. 1448 00:48:38,800 --> 00:48:41,640 >> SORRY, I DIDN'T KNOW I WAS 1449 00:48:41,640 --> 00:48:42,720 NEXT. 1450 00:48:42,720 --> 00:48:44,120 I WOULD LIKE TO HIGHLIGHT 1451 00:48:44,120 --> 00:48:46,320 SOMETHING THAT I THINK WE 1452 00:48:46,320 --> 00:48:48,760 MENTIONED ON SECTION 3 BUT -- 1453 00:48:48,760 --> 00:48:49,600 QUESTION 3 BUT I THINK IT 1454 00:48:49,600 --> 00:48:51,560 BELONGS IN BOTH PLACES AND I'M 1455 00:48:51,560 --> 00:48:52,920 FLEXIBLE IN HOW IT GETS 1456 00:48:52,920 --> 00:48:54,360 INCLUDED, IS THAT WE NEED TO 1457 00:48:54,360 --> 00:48:56,320 CONTINUE TO SUPPORT AND DEVELOP 1458 00:48:56,320 --> 00:48:59,240 AND TO REFINE LONGITUDINAL 1459 00:48:59,240 --> 00:49:03,080 STUDIES SO THESE ARE STUDIES 1460 00:49:03,080 --> 00:49:04,720 THAT CAN START ANY TIME IN A 1461 00:49:04,720 --> 00:49:07,320 PERSON'S LIFE BUT FOLLOWS THEM 1462 00:49:07,320 --> 00:49:08,440 ACROSS TIME, SO YOU TAKE THAT 1463 00:49:08,440 --> 00:49:10,280 SAME PERSON AND YOU'RE FOLLOWING 1464 00:49:10,280 --> 00:49:12,480 THEM ACROSS TIME UNTIL WAY INTO 1465 00:49:12,480 --> 00:49:13,360 ADULTHOOD, AND I THINK SOME OF 1466 00:49:13,360 --> 00:49:15,520 THESE STUDIES HAVE BEEN VERY 1467 00:49:15,520 --> 00:49:17,480 JUST LOOKING AT 1468 00:49:17,480 --> 00:49:19,520 CROSS-SECTIONAL AN ANALYSES BUT 1469 00:49:19,520 --> 00:49:21,840 ACTUALLY THESE PROSPECTIVE 1470 00:49:21,840 --> 00:49:22,520 LONGITUDINAL ANALYSES. 1471 00:49:22,520 --> 00:49:24,160 THE REASON I WANT THEM MENTIONED 1472 00:49:24,160 --> 00:49:26,200 IN BOTH PLACES IS BECAUSE 1473 00:49:26,200 --> 00:49:29,400 TRADITIONAL FUNDING MODELS DON'T 1474 00:49:29,400 --> 00:49:30,800 NECESSARILY ACCOMMODATE THEM. 1475 00:49:30,800 --> 00:49:33,440 TRADITIONAL NIH AND OTHER 1476 00:49:33,440 --> 00:49:35,520 MECHANISMS ARE FROM FOUR TO FIVE 1477 00:49:35,520 --> 00:49:38,160 YEARS, A.S. DEFINITELY FOUR TO 1478 00:49:38,160 --> 00:49:39,560 FIVE YEARS SO THEY DON'T REALLY 1479 00:49:39,560 --> 00:49:40,880 FIT INTO TRADITIONAL MODELS, SO 1480 00:49:40,880 --> 00:49:42,880 I THINK WE NEED TO ENSURE THAT 1481 00:49:42,880 --> 00:49:44,400 THESE STUDIES CONTINUE TO GET 1482 00:49:44,400 --> 00:49:45,280 SUPPORTED AND I KNOW THAT 1483 00:49:45,280 --> 00:49:48,000 THERE'S A NUMBER OF DIFFERENT 1484 00:49:48,000 --> 00:49:48,760 WAYS THAT THEY CAN. 1485 00:49:48,760 --> 00:49:51,720 FOR EXAMPLE, THE CE STUDY IS 1486 00:49:51,720 --> 00:49:53,480 FUNDED IN INCREMENTS BUT THEY 1487 00:49:53,480 --> 00:49:55,560 JUST GOT FUNDED FOR THEIR NEXT 1488 00:49:55,560 --> 00:49:57,400 SET OF INCREMENTAL STUDIES FOR 1489 00:49:57,400 --> 00:49:59,040 THE NEXT FOUR YEARS TO FOLLOW 1490 00:49:59,040 --> 00:50:01,440 THOSE KIDS IN THE FIRST COUPLE 1491 00:50:01,440 --> 00:50:02,920 OF CE PHASES. 1492 00:50:02,920 --> 00:50:04,320 SO THAT'S ONE PARTICULAR 1493 00:50:04,320 --> 00:50:05,320 EXAMPLE, BUT I JUST WANT TO PUT 1494 00:50:05,320 --> 00:50:07,080 A PLUG IN FOR THE IMPORTANCE OF 1495 00:50:07,080 --> 00:50:08,200 LONGITUDINAL ASSESSMENT. 1496 00:50:08,200 --> 00:50:08,720 >> THANK YOU. 1497 00:50:08,720 --> 00:50:10,040 AND I BELIEVE THAT WE DO HAVE 1498 00:50:10,040 --> 00:50:12,440 SOMETHING IN QUESTION 6 ABOUT 1499 00:50:12,440 --> 00:50:14,400 LONGITUDINAL STUDIES IN ADULTS 1500 00:50:14,400 --> 00:50:16,360 AND COHORTS THAT GO INTO 1501 00:50:16,360 --> 00:50:17,480 ADULTHOOD, BUT I DON'T THINK 1502 00:50:17,480 --> 00:50:18,760 THERE'S A PROBLEM WITH 1503 00:50:18,760 --> 00:50:19,440 MENTIONING IT IN MORE THAN ONE 1504 00:50:19,440 --> 00:50:22,360 PLACE. 1505 00:50:22,360 --> 00:50:25,920 AND I DON'T KNOW IFFY LANE MAY T 1506 00:50:25,920 --> 00:50:27,080 HAVE A FOLLOW UP TO THAT. 1507 00:50:27,080 --> 00:50:37,600 DO YOU WANT TO GO AHEAD, ELAINE? 1508 00:50:41,160 --> 00:50:42,720 I THINK ELAINE'S HAND 1509 00:50:42,720 --> 00:50:43,480 DISAPPEARED SO MAYBE SHE MIGHT 1510 00:50:43,480 --> 00:50:44,800 BE HAVING SOME PROBLEMS TOO. 1511 00:50:44,800 --> 00:50:46,680 SO NEXT I'LL GO TO JALYNN 1512 00:50:46,680 --> 00:50:53,560 PRINCE. 1513 00:50:53,560 --> 00:50:57,920 NOW JALYNN HAS DISAPPEARED. 1514 00:50:57,920 --> 00:50:59,120 SO STEVEN, DO YOU HAVE SOME 1515 00:50:59,120 --> 00:51:02,560 COMMENTS IN WRITING? 1516 00:51:02,560 --> 00:51:03,400 >> HI THERE. 1517 00:51:03,400 --> 00:51:05,360 THIS IS STEVEN. 1518 00:51:05,360 --> 00:51:07,880 I'LL BE ADDRESSING A QUESTION 1519 00:51:07,880 --> 00:51:09,400 FROM LINDSEY NEBEKER. 1520 00:51:09,400 --> 00:51:11,200 QUESTION IS, UNDER WHICH 1521 00:51:11,200 --> 00:51:13,040 QUESTION WOULD WE BE ADDRESSING 1522 00:51:13,040 --> 00:51:15,280 SERVICES AND SUPPORTS FOR ADULTS 1523 00:51:15,280 --> 00:51:17,040 WHO ARE VETERANS OR SERVING IN 1524 00:51:17,040 --> 00:51:19,080 THE MILITARY? 1525 00:51:19,080 --> 00:51:22,880 >> THEY COULD BE ADDRESSED IN 1526 00:51:22,880 --> 00:51:24,880 THIS QUESTION THAT'S ON 1527 00:51:24,880 --> 00:51:25,440 ADULTHOOD. 1528 00:51:25,440 --> 00:51:27,720 ARE THERE SPECIFIC ISSUES 1529 00:51:27,720 --> 00:51:30,880 RELATED TO BEING IN THE MILITARY 1530 00:51:30,880 --> 00:51:33,560 THAT YOU'RE CONCERNED ABOUT? 1531 00:51:33,560 --> 00:51:34,480 SO MAYBE LINDSEY MIGHT HAVE TO 1532 00:51:34,480 --> 00:51:35,680 COME BACK WITH FURTHER 1533 00:51:35,680 --> 00:51:37,640 CLARIFICATION ABOUT THAT. 1534 00:51:37,640 --> 00:51:39,800 >> NO, THIS IS LINDSEY. 1535 00:51:39,800 --> 00:51:40,920 I'LL JUST POP IN. 1536 00:51:40,920 --> 00:51:42,360 NO, THE ONLY THING -- THE REASON 1537 00:51:42,360 --> 00:51:43,440 I WAS ASKING THIS QUESTION IS 1538 00:51:43,440 --> 00:51:44,640 THAT I WAS TRYING TO READ 1539 00:51:44,640 --> 00:51:47,480 THROUGH AND I WAS TRYING TO 1540 00:51:47,480 --> 00:51:48,800 LOCATE ANY REFERENCES TO IT. 1541 00:51:48,800 --> 00:51:50,320 AND I MAY HAVE MISSED IF THERE 1542 00:51:50,320 --> 00:51:53,720 WAS MENTION OF IT IN THE 1543 00:51:53,720 --> 00:51:54,440 DOCUMENTS, BUT -- 1544 00:51:54,440 --> 00:51:56,720 >> NO, THE V.A. IS A MEMBER OF 1545 00:51:56,720 --> 00:51:58,080 THE COMMITTEE, BUT WE DON'T 1546 00:51:58,080 --> 00:52:00,920 REALLY HAVE A LOT OF INFORMATION 1547 00:52:00,920 --> 00:52:01,440 ABOUT VETERANS. 1548 00:52:01,440 --> 00:52:03,880 ONE OF THE ISSUES IS I THINK 1549 00:52:03,880 --> 00:52:07,960 THAT THEY DO HAVE VETERANS WHO 1550 00:52:07,960 --> 00:52:10,120 ARE GETTING DIAGNOSED BUT IF 1551 00:52:10,120 --> 00:52:11,960 YOU'RE ACTIVE DUTY, THERE CAN BE 1552 00:52:11,960 --> 00:52:15,280 PROBLEMS WITH MENTIONING THAT 1553 00:52:15,280 --> 00:52:16,800 YOU MAY BE ON THE SPECTRUM OR 1554 00:52:16,800 --> 00:52:18,120 EVEN GETTING EVALUATED AS FAR AS 1555 00:52:18,120 --> 00:52:18,760 I UNDERSTAND. 1556 00:52:18,760 --> 00:52:19,960 BUT SOME PEOPLE WHO ARE VETERANS 1557 00:52:19,960 --> 00:52:25,560 DO GO ON TO GET DIAGNOSES, SO WE 1558 00:52:25,560 --> 00:52:26,480 COULD GET SOME INFORMATION ABOUT 1559 00:52:26,480 --> 00:52:27,640 THE V.A. ABOUT THAT. 1560 00:52:27,640 --> 00:52:28,920 BUT THE LAST TIME I TALKED WITH 1561 00:52:28,920 --> 00:52:30,600 THEM, IT SOUNDED LIKE IT WASN'T 1562 00:52:30,600 --> 00:52:32,880 VERY DOCUMENTED, SO WE COULD SEE 1563 00:52:32,880 --> 00:52:34,080 IF THERE'S ANYTHING MORE THAT 1564 00:52:34,080 --> 00:52:34,960 THEY MIGHT HAVE TO ADD. 1565 00:52:34,960 --> 00:52:36,720 IS THAT WHAT YOU'RE TALKING 1566 00:52:36,720 --> 00:52:36,920 ABOUT? 1567 00:52:36,920 --> 00:52:39,880 >> YEAH, I THINK I WAS MORE 1568 00:52:39,880 --> 00:52:41,840 CONCERNED OR WANTING TO FOCUS ON 1569 00:52:41,840 --> 00:52:43,560 BECAUSE OF THE COMPLEXITY OF THE 1570 00:52:43,560 --> 00:52:45,120 SERVICES AND SUPPORTS THAT 1571 00:52:45,120 --> 00:52:46,000 VETERANS AND PEOPLE IN THE 1572 00:52:46,000 --> 00:52:49,280 MILITARY ALREADY HAVE, YOU KNOW, 1573 00:52:49,280 --> 00:52:50,480 COMBINING THAT WITH IF THEY 1574 00:52:50,480 --> 00:52:54,200 HAPPEN TO BE AUTISTIC. 1575 00:52:54,200 --> 00:52:56,200 AND JUST RECOGNIZING AND 1576 00:52:56,200 --> 00:52:57,840 ACKNOWLEDGING THE COMPLEXITY OF 1577 00:52:57,840 --> 00:52:59,440 THE SERVICES AND SUPPORTS THAT 1578 00:52:59,440 --> 00:53:03,200 WE'D NEED TO ADDRESS. 1579 00:53:03,200 --> 00:53:05,600 >> SO WE CAN CHECK IN WITH THE 1580 00:53:05,600 --> 00:53:07,240 VA ABOUT THAT AND SEE IF THEY 1581 00:53:07,240 --> 00:53:08,200 HAVE ANYTHING THEY WOULD WANT US 1582 00:53:08,200 --> 00:53:12,560 TO MENTION IN THE PLAN. 1583 00:53:12,560 --> 00:53:14,800 SO I'LL GO BACK TO ELAINE TO SEE 1584 00:53:14,800 --> 00:53:15,960 IF YOU MIGHT BE ABLE TO GIVE 1585 00:53:15,960 --> 00:53:18,360 YOUR COMMENT. 1586 00:53:18,360 --> 00:53:20,680 >> OH, JEEZ, I DON'T KNOW WHY 1587 00:53:20,680 --> 00:53:21,200 EVERYTHING FROZE UP. 1588 00:53:21,200 --> 00:53:21,800 >> NO PROBLEM. 1589 00:53:21,800 --> 00:53:23,960 >> THIS IS FOLLOWING UP FROM 1590 00:53:23,960 --> 00:53:25,160 YESTERDAY ON OVERSAMPLING, SO 1591 00:53:25,160 --> 00:53:27,040 THIS IS ON THIS TOPIC OF 1592 00:53:27,040 --> 00:53:28,040 LONGITUDINAL STUDIES. 1593 00:53:28,040 --> 00:53:30,200 SO NOT JUST INDIVIDUAL -- NOT 1594 00:53:30,200 --> 00:53:31,840 JUST STUDIES FOCUSED 1595 00:53:31,840 --> 00:53:33,480 SPECIFICALLY ON AUTISM, BUT A 1596 00:53:33,480 --> 00:53:34,760 LOT THAT THE FEDERAL GOVERNMENT 1597 00:53:34,760 --> 00:53:38,400 IS DOING, WE SHOULD REALLY BE 1598 00:53:38,400 --> 00:53:39,600 ADVOCATING FOR OVERSAMPLING OF 1599 00:53:39,600 --> 00:53:42,120 THIS POPULATION. 1600 00:53:42,120 --> 00:53:44,640 AND THE THING THAT ACTUALLY -- I 1601 00:53:44,640 --> 00:53:46,040 WAS JUST ON A CALL THE OTHER 1602 00:53:46,040 --> 00:53:47,080 DAY, THERE'S MAYBE SOMEBODY ON 1603 00:53:47,080 --> 00:53:48,160 THE CALL WHO KNOWS MORE ABOUT 1604 00:53:48,160 --> 00:53:50,520 THIS, BUT BUREAU OF LABOR 1605 00:53:50,520 --> 00:53:53,360 STATISTICS IS VERY SPECIFICALLY 1606 00:53:53,360 --> 00:53:56,760 IN THE PROCESS OF PLANNING A 1607 00:53:56,760 --> 00:54:00,040 LONGITUDINAL STUDY THAT COVERS 1608 00:54:00,040 --> 00:54:03,840 SPECIFICALLY THIS TRANSITION 1609 00:54:03,840 --> 00:54:05,360 PERIOD FROM -- INTO ADULTHOOD, 1610 00:54:05,360 --> 00:54:06,880 AND SO IT JUST SEEMS TO ME THAT 1611 00:54:06,880 --> 00:54:08,360 THIS IS LIKE A PERFECT TIME TO 1612 00:54:08,360 --> 00:54:12,680 GET IN AND THERE ARE PROBABLY 1613 00:54:12,680 --> 00:54:13,720 OTHER THINGS, SO IF ANYBODY 1614 00:54:13,720 --> 00:54:15,480 KNOWS MORE ABOUT THAT OR I CAN 1615 00:54:15,480 --> 00:54:17,120 SEND THE CONTACT OF THE PEOPLE 1616 00:54:17,120 --> 00:54:18,400 THAT WERE LOOKING FOR INPUT ON 1617 00:54:18,400 --> 00:54:19,200 THAT STUDY. 1618 00:54:19,200 --> 00:54:20,760 >> OH, THANKS. 1619 00:54:20,760 --> 00:54:22,040 IS THAT SOMETHING THAT'S A PART 1620 00:54:22,040 --> 00:54:22,840 OF DEPARTMENT OF LABOR? 1621 00:54:22,840 --> 00:54:27,600 >> I KNOW NOTHING ABOUT IT. 1622 00:54:27,600 --> 00:54:28,240 IT'S BUREAU OF LABOR STATISTICS. 1623 00:54:28,240 --> 00:54:31,400 SCOTT, DO YOU KNOW? 1624 00:54:31,400 --> 00:54:32,800 >> SO I'LL HAVE TO CROSS-CHECK 1625 00:54:32,800 --> 00:54:33,320 ON THAT. 1626 00:54:33,320 --> 00:54:36,680 I KNOW WE ARE RUNNING A RESEARCH 1627 00:54:36,680 --> 00:54:43,240 PROJECT AT ODEP ON AUTISTIC -- 1628 00:54:43,240 --> 00:54:44,080 ON ACCESS TO EMPLOYMENT, WE'VE 1629 00:54:44,080 --> 00:54:45,840 BEEN RUNNING LISTENING SEGS, ET 1630 00:54:45,840 --> 00:54:46,200 CETERA. 1631 00:54:46,200 --> 00:54:47,840 BUT I HAVEN'T HEARD ANYTHING 1632 00:54:47,840 --> 00:54:49,920 ABOUT OUR SISTER AGENCY BLS 1633 00:54:49,920 --> 00:54:50,920 RUNNING ANYTHING BUT I CAN CHECK 1634 00:54:50,920 --> 00:54:54,400 WITH MY COUNTERPARTS THERE AFTER 1635 00:54:54,400 --> 00:54:55,720 THIS SESSION AND ASK ABOUT THAT. 1636 00:54:55,720 --> 00:54:57,360 >> I'LL JUST GO AHEAD AND EMAIL 1637 00:54:57,360 --> 00:54:58,440 THE CONTACTS I HAVE. 1638 00:54:58,440 --> 00:55:02,720 >> YEAH, IF YOU HEARD THAT FROM 1639 00:55:02,720 --> 00:55:04,480 BLS, IF YOU COULD EMAIL TO US 1640 00:55:04,480 --> 00:55:05,440 INCLUDING MYSELF TO LET ME KNOW 1641 00:55:05,440 --> 00:55:06,880 ABOUT THAT SO I CAN TALK TO THEM 1642 00:55:06,880 --> 00:55:10,040 AND GET ON THE SAME PAGE, 1643 00:55:10,040 --> 00:55:14,640 BECAUSE I'D BE DEFINITELY OF 1644 00:55:14,640 --> 00:55:15,880 INTEREST IN THAT FOCAL POINT. 1645 00:55:15,880 --> 00:55:17,600 >> IT SEEMS LIKE A GOODWIN 1646 00:55:17,600 --> 00:55:18,120 DOUGH. 1647 00:55:18,120 --> 00:55:18,520 OKAY, THANK YOU. 1648 00:55:18,520 --> 00:55:22,400 >> THANK YOU. 1649 00:55:22,400 --> 00:55:24,720 JENNIFER JOHNSON, DID YOU EVER 1650 00:55:24,720 --> 00:55:26,680 GET YOUR SYSTEM WORKING BECAUSE 1651 00:55:26,680 --> 00:55:27,960 I KNOW I SKIPPED OVER YOU 1652 00:55:27,960 --> 00:55:29,080 BECAUSE YOU WERE HAVING SOME 1653 00:55:29,080 --> 00:55:34,080 KIND OF DIFFICULTIES. 1654 00:55:34,080 --> 00:55:35,120 >> CAN YOU HEAR ME NOW? 1655 00:55:35,120 --> 00:55:36,560 >> YES, I CAN HEAR YOU. 1656 00:55:36,560 --> 00:55:37,880 >> ALL RIGHT, GREAT. 1657 00:55:37,880 --> 00:55:39,400 I JUST HAD A COUPLE THINGS. 1658 00:55:39,400 --> 00:55:44,240 SOME OF WHICH MAY OVERLAP WITH 1659 00:55:44,240 --> 00:55:46,040 QUESTION 5. 1660 00:55:46,040 --> 00:55:49,480 BUT I THINK ONE IMPORTANT 1661 00:55:49,480 --> 00:55:50,480 POLICY, I GUESS DEVELOPMENT WE 1662 00:55:50,480 --> 00:55:53,840 COULD CALL IT, IS THE HCBS 1663 00:55:53,840 --> 00:55:56,120 SETTINGS RULE WILL BE -- THE 1664 00:55:56,120 --> 00:55:57,680 STATE TRANSITION PLANS WILL BE 1665 00:55:57,680 --> 00:56:01,040 COMPLETING THEIR PROCESS BY NEXT 1666 00:56:01,040 --> 00:56:02,680 YEAR, SO I THINK JUST LOOKING AT 1667 00:56:02,680 --> 00:56:03,920 THE PLAN AND WHAT'S IN THERE 1668 00:56:03,920 --> 00:56:05,440 RELATED TO THE SETTINGS RULE AND 1669 00:56:05,440 --> 00:56:07,200 WHERE IT MIGHT NEED TO BE 1670 00:56:07,200 --> 00:56:08,280 UPDATED GIVEN WHERE THINGS ARE 1671 00:56:08,280 --> 00:56:13,320 WITH THAT WILL BE IMPORTANT, AND 1672 00:56:13,320 --> 00:56:18,240 THEN ANOTHER THING THAT I THINK 1673 00:56:18,240 --> 00:56:19,320 WAS A DEVELOPMENT SINCE THE LAST 1674 00:56:19,320 --> 00:56:21,640 TIME THE STRATEGIC PLAN WAS 1675 00:56:21,640 --> 00:56:23,800 UPDATED WAS RELEASE OF THE OIG 1676 00:56:23,800 --> 00:56:25,480 REPORT ON CRITICAL INCIDENT 1677 00:56:25,480 --> 00:56:26,960 MONITORING SYSTEMS, AND YOU 1678 00:56:26,960 --> 00:56:29,160 KNOW, BIG GAPS IN THOSE 1679 00:56:29,160 --> 00:56:30,280 MONITORING SYSTEMS. 1680 00:56:30,280 --> 00:56:33,040 SO I THINK GENERALLY JUST 1681 00:56:33,040 --> 00:56:34,200 HEALTH -- MONITORING FOR HEALTH 1682 00:56:34,200 --> 00:56:35,640 AND SAFETY AND HOME AND 1683 00:56:35,640 --> 00:56:37,040 COMMUNITY-BASED SERVICES IS 1684 00:56:37,040 --> 00:56:39,880 ANOTHER IMPORTANT AREA THAT WE 1685 00:56:39,880 --> 00:56:41,000 WANT TO MAKE SURE IS 1686 00:56:41,000 --> 00:56:44,800 INCORPORATED INTO THE PLAN. 1687 00:56:44,800 --> 00:56:49,720 AND THEN THE LAST IS ON A 1688 00:56:49,720 --> 00:56:51,040 RELATED NOTE TO THAT, WE DON'T 1689 00:56:51,040 --> 00:56:55,960 HAVE A REALLY GOOD SYSTEM FOR 1690 00:56:55,960 --> 00:56:58,480 TRACKING ABUSE AND NEGLECT AND 1691 00:56:58,480 --> 00:56:59,480 VICTIMIZATION OF INDIVIDUALS 1692 00:56:59,480 --> 00:57:03,640 WITH DISABILITIES GENERALLY, BUT 1693 00:57:03,640 --> 00:57:07,560 AUTISTIC PEOPLE SPECIFICALLY, SO 1694 00:57:07,560 --> 00:57:08,680 I DON'T KNOW IF THERE'S ANYTHING 1695 00:57:08,680 --> 00:57:11,360 IN THE PLAN RIGHT NOW AROUND 1696 00:57:11,360 --> 00:57:11,720 THAT. 1697 00:57:11,720 --> 00:57:15,040 WE DO SUPPORT WHAT IS CALLED THE 1698 00:57:15,040 --> 00:57:17,000 NATIONAL ADULT MALTREATMENT 1699 00:57:17,000 --> 00:57:18,280 REPORTING SYSTEM, SO THIS IS A 1700 00:57:18,280 --> 00:57:20,440 SYSTEM THAT ADULT PROTECTIVE 1701 00:57:20,440 --> 00:57:23,440 SERVICE PROVIDERS WILL USE, OUR 1702 00:57:23,440 --> 00:57:27,040 AGENCIES WILL USE TO TRACK 1703 00:57:27,040 --> 00:57:31,080 ALLEGATIONS OF ABUSE OR NEGLECT, 1704 00:57:31,080 --> 00:57:32,280 SO THAT MAY BE SOMETHING TO 1705 00:57:32,280 --> 00:57:33,520 HIGHLIGHT IN THE PLAN AND OF 1706 00:57:33,520 --> 00:57:37,120 COURSE DOJ DOES HAVE THE WORK 1707 00:57:37,120 --> 00:57:40,160 ITS DOING RELATED TO INDIVIDUALS 1708 00:57:40,160 --> 00:57:45,840 WITH DISABILITIES, VICTIMS OF 1709 00:57:45,840 --> 00:57:47,160 CRIME, SO JUST AGAIN WANT TO 1710 00:57:47,160 --> 00:57:48,600 MAKE SURE THAT KIND OF ISSUE IS 1711 00:57:48,600 --> 00:57:52,320 INCORPORATED INTO THE PLAN. 1712 00:57:52,320 --> 00:57:53,600 >> OKAY, THANK YOU. 1713 00:57:53,600 --> 00:57:55,600 WE CAN ALSO TALK WITH DOJ ABOUT 1714 00:57:55,600 --> 00:57:56,440 ANYTHING THEY MIGHT KNOW ABOUT 1715 00:57:56,440 --> 00:58:00,840 THAT AS WELL. 1716 00:58:00,840 --> 00:58:03,040 OKAY. 1717 00:58:03,040 --> 00:58:05,760 NEXT WE'LL TAKE A COMMENT FROM 1718 00:58:05,760 --> 00:58:14,960 JOE PIVEN. 1719 00:58:14,960 --> 00:58:16,360 >> CAN YOU HEAR ME, SUSAN? 1720 00:58:16,360 --> 00:58:17,040 >> MM-HMM. 1721 00:58:17,040 --> 00:58:18,880 >> OKAY. 1722 00:58:18,880 --> 00:58:20,760 I THINK YOU'RE AWARE, OTHER 1723 00:58:20,760 --> 00:58:22,280 PEOPLE ARE AWARE I'VE HAD SORT 1724 00:58:22,280 --> 00:58:23,600 OF AN ACADEMIC RESEARCH INTEREST 1725 00:58:23,600 --> 00:58:26,080 IN OLDER AGE AND AUTISM. 1726 00:58:26,080 --> 00:58:28,400 SO THIS IS A BULLET POINT IN 1727 00:58:28,400 --> 00:58:32,240 THIS WHOLE SECTION ON LIFESPAN. 1728 00:58:32,240 --> 00:58:38,680 BUT I THINK IT REQUIRES A LOT 1729 00:58:38,680 --> 00:58:41,640 MORE. 1730 00:58:41,640 --> 00:58:45,040 I THINK JUST AS AN EXAMPLE, 1731 00:58:45,040 --> 00:58:49,080 AUTISM SPEAKS JUST HAD TWO DAYS 1732 00:58:49,080 --> 00:58:50,160 STARTING TO TRY TO UNDERSTAND 1733 00:58:50,160 --> 00:58:53,680 THE BREADTH AND DEPTH OF THIS 1734 00:58:53,680 --> 00:58:54,120 AREA. 1735 00:58:54,120 --> 00:58:55,320 AND I'M A LITTLE WORRIED THAT 1736 00:58:55,320 --> 00:58:57,480 IT'S KIND OF BEYOND THE SCOPE OF 1737 00:58:57,480 --> 00:58:58,360 THE CONVERSATION THAT WE'RE 1738 00:58:58,360 --> 00:59:00,880 HAVING THIS AFTERNOON TO JUST 1739 00:59:00,880 --> 00:59:05,360 THROW OUT A FEW IDEAS FOR A 1740 00:59:05,360 --> 00:59:07,000 STRATEGIC PLAN WHEN, YOU KNOW, 1741 00:59:07,000 --> 00:59:08,760 THERE ARE, IN OTHER FIELDS, 1742 00:59:08,760 --> 00:59:11,080 WHETHER IT'S PSYCHIATRY OR 1743 00:59:11,080 --> 00:59:12,480 MEDICINE, THERE ARE WHOLE 1744 00:59:12,480 --> 00:59:18,360 TEXTBOOKS WRITTEN ABOUT OLDER 1745 00:59:18,360 --> 00:59:19,040 AGE. 1746 00:59:19,040 --> 00:59:20,440 I THINK MAYBE YOU HEARD ME SAY A 1747 00:59:20,440 --> 00:59:22,960 FEW WEEKS AGO ON THE AUTISM 1748 00:59:22,960 --> 00:59:25,840 SPEAKS WORKSHOP. 1749 00:59:25,840 --> 00:59:29,640 I, FOR ONE, THINK WE HAVE ALMOST 1750 00:59:29,640 --> 00:59:32,960 NO KNOWLEDGE BASE ABOUT THIS 1751 00:59:32,960 --> 00:59:34,120 WHOLE AREA, AND I DON'T KNOW 1752 00:59:34,120 --> 00:59:35,760 THAT WE CAN JUST EXTRAPOLATE 1753 00:59:35,760 --> 00:59:38,600 FROM WHAT WE KNOW IN A DISORDER 1754 00:59:38,600 --> 00:59:39,920 THAT'S MOSTLY BEEN VIEWED AS A 1755 00:59:39,920 --> 00:59:43,880 DISORDER OF CHILDHOOD AND TO 1756 00:59:43,880 --> 00:59:44,920 OLDER AGE. 1757 00:59:44,920 --> 00:59:49,000 SO YOU KNOW, I THINK THAT THIS 1758 00:59:49,000 --> 00:59:53,800 JUST REQUIRES A LOT MORE 1759 00:59:53,800 --> 00:59:55,480 THOUGHT, AND I DON'T KNOW WHAT 1760 00:59:55,480 --> 00:59:57,320 YOU'RE THINKING ABOUT IN THIS 1761 00:59:57,320 --> 00:59:58,760 REGARD. 1762 00:59:58,760 --> 01:00:00,360 WE CAN TALK ABOUT SOME IDEAS OF 1763 01:00:00,360 --> 01:00:04,000 BRINGING A SESSION INTO THIS 1764 01:00:04,000 --> 01:00:06,400 MEETING, BUT I'M JUST WONDERING 1765 01:00:06,400 --> 01:00:07,840 ABOUT A SECOND WORKING GROUP OR 1766 01:00:07,840 --> 01:00:10,240 SOMETHING THAT WOULD GIVE THIS A 1767 01:00:10,240 --> 01:00:11,600 LITTLE BIT MORE ATTENTION. 1768 01:00:11,600 --> 01:00:15,200 GRANTED, I'M BIASED ABOUT THIS. 1769 01:00:15,200 --> 01:00:18,160 I'VE SPENT SOME TIME THINKING 1770 01:00:18,160 --> 01:00:19,280 ABOUT THIS MAYBE MORE THAN OTHER 1771 01:00:19,280 --> 01:00:21,320 PEOPLE, BUT I DON'T THINK PEOPLE 1772 01:00:21,320 --> 01:00:23,880 QUITE APPRECIATE HOW MUCH IS 1773 01:00:23,880 --> 01:00:25,600 THERE THAT WE'RE NOT THINKING 1774 01:00:25,600 --> 01:00:27,400 ABOUT. 1775 01:00:27,400 --> 01:00:29,960 SO I'LL JUST LEAVE IT AT THAT. 1776 01:00:29,960 --> 01:00:30,840 >> THANK YOU, JOE. 1777 01:00:30,840 --> 01:00:32,160 SO WE WERE INTENTIONAL ABOUT 1778 01:00:32,160 --> 01:00:34,240 TRYING TO CREATE SOMETHING 1779 01:00:34,240 --> 01:00:36,320 MENTIONING OLDER ADULTHOOD IN 1780 01:00:36,320 --> 01:00:38,080 AUTISM IN THE PLAN, AND THE PLAN 1781 01:00:38,080 --> 01:00:39,480 IS A GUIDING DOCUMENT. 1782 01:00:39,480 --> 01:00:43,760 IT'S NOT GOING TO BE A FULL 1783 01:00:43,760 --> 01:00:44,840 LITERATURE REVIEW ON ANY ONE 1784 01:00:44,840 --> 01:00:46,240 TOPIC. 1785 01:00:46,240 --> 01:00:48,320 IT'S ALREADY, AS YOU'VE ALL SEEN 1786 01:00:48,320 --> 01:00:50,080 HOW MANY DIFFERENT TOPICS WE'RE 1787 01:00:50,080 --> 01:00:51,520 TRYING TO COVER, THE PLAN WILL 1788 01:00:51,520 --> 01:00:52,880 PROBABLY END UP TO BE ABOUT 100 1789 01:00:52,880 --> 01:00:53,360 PAGES OR SO. 1790 01:00:53,360 --> 01:00:54,840 IT'S GOING TO BE A BIG DOCUMENT, 1791 01:00:54,840 --> 01:00:56,120 BUT IT WILL HAVE A LITTLE BIT 1792 01:00:56,120 --> 01:00:57,120 ABOUT A LOT OF THINGS, SO IT 1793 01:00:57,120 --> 01:00:58,640 WILL HAVE A LITTLE BIT ABOUT 1794 01:00:58,640 --> 01:01:00,080 OLDER ADULTHOOD, IT WON'T 1795 01:01:00,080 --> 01:01:02,880 NECESSARILY BE THE TEXTBOOK ON 1796 01:01:02,880 --> 01:01:03,560 OLDER ADULTHOOD, BUT WE 1797 01:01:03,560 --> 01:01:05,320 CERTAINLY CAN FIT IN A FEW 1798 01:01:05,320 --> 01:01:07,600 PARAGRAPHS ABOUT IF WE HAVE SOME 1799 01:01:07,600 --> 01:01:08,480 GOOD INFORMATION AND IT'S REALLY 1800 01:01:08,480 --> 01:01:10,360 MEANT TO BE A GUIDE TO THE 1801 01:01:10,360 --> 01:01:12,080 AGENCIES ABOUT, HEY, THIS IS AN 1802 01:01:12,080 --> 01:01:14,040 IMPORTANT ISSUE, WE WOULD LIKE 1803 01:01:14,040 --> 01:01:15,240 TO SEE MORE ACTION IN THIS AREA 1804 01:01:15,240 --> 01:01:18,440 AND GIVING THEM SOME THOUGHTS 1805 01:01:18,440 --> 01:01:19,960 ABOUT WHAT KINDS OF THINGS 1806 01:01:19,960 --> 01:01:21,080 PEOPLE THINK ARE IMPORTANT 1807 01:01:21,080 --> 01:01:24,560 PRIORITIES AND NOT GETTING INTO 1808 01:01:24,560 --> 01:01:26,080 MINUTIA AND LITTLE DETAILS, THAT 1809 01:01:26,080 --> 01:01:27,720 THOSE AGENCIES THAT GIVE OUT 1810 01:01:27,720 --> 01:01:30,040 FUNDING OR THAT ARE PROVIDING 1811 01:01:30,040 --> 01:01:32,720 PROGRAMS FOR PEOPLE WILL 1812 01:01:32,720 --> 01:01:33,640 PROBABLY LIFT SOMETHING FROM 1813 01:01:33,640 --> 01:01:34,600 WHATEVER LANGUAGE WE PUT THERE 1814 01:01:34,600 --> 01:01:36,560 AND BE ABLE TO SHAPE IT THEIR 1815 01:01:36,560 --> 01:01:39,560 OWN WAY USING CONSULTATIONS WITH 1816 01:01:39,560 --> 01:01:41,400 EXPERTS IN THOSE FIELDS. 1817 01:01:41,400 --> 01:01:42,720 SO WE DON'T NEED TO FEEL LIKE WE 1818 01:01:42,720 --> 01:01:44,240 NEED TO BE COMPREHENSIVE, BUT WE 1819 01:01:44,240 --> 01:01:46,000 DO WANT TO MENTION EVERY 1820 01:01:46,000 --> 01:01:47,840 IMPORTANT TOPIC AND I AGREE THAT 1821 01:01:47,840 --> 01:01:49,400 OLDER ADULTHOOD AND AUTISM IS 1822 01:01:49,400 --> 01:01:50,240 IMPORTANT, AND WE DEFINITELY 1823 01:01:50,240 --> 01:01:51,800 WANT TO INCLUDE IT IN THE PLAN. 1824 01:01:51,800 --> 01:01:57,360 SO THANK YOU. 1825 01:01:57,360 --> 01:01:59,680 I WILL GO TO ALYCIA HALLADAY 1826 01:01:59,680 --> 01:02:01,000 NEXT. 1827 01:02:01,000 --> 01:02:05,040 >> I JUST WANTED TO ASK A QUICK 1828 01:02:05,040 --> 01:02:05,320 QUESTION. 1829 01:02:05,320 --> 01:02:09,960 LIVE SPANLIFESPAN IS REALLY FROO 1830 01:02:09,960 --> 01:02:11,360 DEATH, WHEN WE REALLY SEEM TO BE 1831 01:02:11,360 --> 01:02:13,120 TALKING ABOUT ISSUES, AS WE 1832 01:02:13,120 --> 01:02:14,080 SHOULD, I'M OUTWARDLY 1833 01:02:14,080 --> 01:02:16,040 QUESTIONING THE TITLE OF THIS 1834 01:02:16,040 --> 01:02:17,400 PARTICULAR CHAPTER OR QUESTION. 1835 01:02:17,400 --> 01:02:21,200 WE'RE REALLY TALKING ABOUT 1836 01:02:21,200 --> 01:02:22,280 ANYTHING BETWEEN -- THINGS THAT 1837 01:02:22,280 --> 01:02:23,840 WE NEED TO PREPARE CHILDREN AND 1838 01:02:23,840 --> 01:02:29,640 YOUNG ADULTS FOR, BUT WE REALLY 1839 01:02:29,640 --> 01:02:31,160 MAY BE TALKING ABOUT THINGS THAT 1840 01:02:31,160 --> 01:02:32,360 START FROM ADOLESCENT TO 1841 01:02:32,360 --> 01:02:33,040 ADULTHOOD. 1842 01:02:33,040 --> 01:02:34,320 SO SHOULD WE KEEP IT AS 1843 01:02:34,320 --> 01:02:34,680 LIFESPAN? 1844 01:02:34,680 --> 01:02:36,400 IT SEEMS TO ME IT'S TOO BROAD 1845 01:02:36,400 --> 01:02:37,600 WHEREAS, YOU KNOW -- I DON'T 1846 01:02:37,600 --> 01:02:38,600 KNOW, I'M JUST THINKING THAT IT 1847 01:02:38,600 --> 01:02:41,880 MAY NOT ACCURATELY REPRESENT THE 1848 01:02:41,880 --> 01:02:43,200 LIFESPAN AND THAT KIND OF 1849 01:02:43,200 --> 01:02:44,520 OCCURRED TO ME WHEN WE TALKED 1850 01:02:44,520 --> 01:02:46,360 ABOUT LONGITUDINAL STUDIES AND 1851 01:02:46,360 --> 01:02:47,920 HOW THEY SHOULD BE FOCUSED ON 1852 01:02:47,920 --> 01:02:48,160 ADULTS. 1853 01:02:48,160 --> 01:02:50,640 >> JUST JUMPING IN, I THINK THAT 1854 01:02:50,640 --> 01:02:55,040 DIRECTDREXEL AND A COUPLE OF OTR 1855 01:02:55,040 --> 01:02:56,320 TRANSITION GROUPS HAVE USED LIFE 1856 01:02:56,320 --> 01:02:56,680 COURSE. 1857 01:02:56,680 --> 01:02:57,840 I DON'T KNOW IF THAT'S HELPFUL 1858 01:02:57,840 --> 01:03:00,160 OR NOT. 1859 01:03:00,160 --> 01:03:02,240 >> YEAH, I CAN'T REALLY SPEAK TO 1860 01:03:02,240 --> 01:03:05,200 HOW OTHER PEOPLE USE IT. 1861 01:03:05,200 --> 01:03:08,000 I JUST WANT US TO THINK ABOUT 1862 01:03:08,000 --> 01:03:08,920 WHETHER OR NOT WE'RE REALLY 1863 01:03:08,920 --> 01:03:11,320 TALKING ABOUT THE LIFESPAN IN 1864 01:03:11,320 --> 01:03:13,720 THIS PARTICULAR CHAPTER. 1865 01:03:13,720 --> 01:03:17,200 >> SO SOME OF THAT IS 1866 01:03:17,200 --> 01:03:19,160 HISTORICAL, AND WE HAVE QUESTION 1867 01:03:19,160 --> 01:03:21,080 5, AS I SAID IT WAS THERE BEFORE 1868 01:03:21,080 --> 01:03:21,680 QUESTION 6 CAME ALONG BECAUSE 1869 01:03:21,680 --> 01:03:23,360 THE COMMITTEE IN 2010 DECIDED 1870 01:03:23,360 --> 01:03:26,520 THEY REALLY WANTED TO FOCUS ON 1871 01:03:26,520 --> 01:03:27,920 ADULTHOOD AND WE STARTED WITH 1872 01:03:27,920 --> 01:03:31,760 ADULTHOOD WITH TRANSITION AND 1873 01:03:31,760 --> 01:03:33,200 YOUNGER ADULTHOOD, EARLY 1874 01:03:33,200 --> 01:03:35,040 ADULTHOOD, AND THAT WHOLE AREA 1875 01:03:35,040 --> 01:03:36,560 HAS EXPANDED A LOT OVER THE LAST 1876 01:03:36,560 --> 01:03:38,080 MORE THAN A DECADE, SO THERE IS 1877 01:03:38,080 --> 01:03:40,400 MORE TO TALK ABOUT NOW THAN 1878 01:03:40,400 --> 01:03:44,320 THERE WAS BACK IN 2010. 1879 01:03:44,320 --> 01:03:45,760 BUT SOME OF THE CHILDHOOD ISSUES 1880 01:03:45,760 --> 01:03:49,480 ARE IN QUESTION 5 MORE LIKE 1881 01:03:49,480 --> 01:03:51,000 EARLY EDUCATION AND ISSUES LIKE 1882 01:03:51,000 --> 01:03:55,600 THAT, SO THAT'S A HISTORICAL 1883 01:03:55,600 --> 01:03:56,680 DISTINCTION. 1884 01:03:56,680 --> 01:03:58,120 THESE CHAPTERS ARE NOT PERFECT. 1885 01:03:58,120 --> 01:03:58,880 HOWEVER, WE'RE TRYING TO KEEP 1886 01:03:58,880 --> 01:04:01,840 SOME OF IT THE SAME BECAUSE 1887 01:04:01,840 --> 01:04:03,360 WE'VE BEEN TRACKING DATA ON 1888 01:04:03,360 --> 01:04:04,560 RESEARCH SINCE 2008 AND IF WE 1889 01:04:04,560 --> 01:04:05,880 START MIXING THINGS AROUND, THEN 1890 01:04:05,880 --> 01:04:07,080 WE WON'T BE ABLE TO KEEP 1891 01:04:07,080 --> 01:04:07,360 TRACKING. 1892 01:04:07,360 --> 01:04:09,840 SO THAT'S THE PURPOSE OF KEEPING 1893 01:04:09,840 --> 01:04:11,680 THEM IN THEIR BINS, SO WE CAN -- 1894 01:04:11,680 --> 01:04:14,560 >> THAT'S GOOD ENOUGH FOR ME. 1895 01:04:14,560 --> 01:04:17,720 >> I KNOW THAT FOR PEOPLE LIKE 1896 01:04:17,720 --> 01:04:19,320 YOU, YOU DO WANT TO KNOW HOW 1897 01:04:19,320 --> 01:04:21,080 THINGS HAVE CHANGED SINCE 2008, 1898 01:04:21,080 --> 01:04:22,280 SO OUR OFFICE IS KEEPING TRACK 1899 01:04:22,280 --> 01:04:24,560 OF THAT, BUT IF WE START KIND OF 1900 01:04:24,560 --> 01:04:27,320 MESSING AROUND WITH THE 1901 01:04:27,320 --> 01:04:29,600 DEFINITIONS TOO MUCH, THEN THOSE 1902 01:04:29,600 --> 01:04:30,920 DATA WILL NOR 1903 01:04:30,920 --> 01:04:31,200 MEANINGFUL. 1904 01:04:31,200 --> 01:04:32,360 >> OKAY. 1905 01:04:32,360 --> 01:04:33,280 >> IT'S NOT PERFECT. 1906 01:04:33,280 --> 01:04:35,440 >> I KNOW WE'RE TRYING TO BE 1907 01:04:35,440 --> 01:04:36,080 SUPER ACCURATE AND 1908 01:04:36,080 --> 01:04:37,400 REPRESENTATIVE ABOUT EACH 1909 01:04:37,400 --> 01:04:39,240 PARTICULAR QUESTION TITLES, SO 1910 01:04:39,240 --> 01:04:41,560 THAT'S WHERE I'M COMING FROM. 1911 01:04:41,560 --> 01:04:43,080 HOWEVER, I COMPLETELY AM WITH 1912 01:04:43,080 --> 01:04:43,400 YOU. 1913 01:04:43,400 --> 01:04:44,920 IF IT'S FOR THE PURPOSES OF 1914 01:04:44,920 --> 01:04:46,680 TRACKING AND MAKING SURE WE LOOK 1915 01:04:46,680 --> 01:04:48,760 AT THINGS ACROSS THE LIFESPAN SO 1916 01:04:48,760 --> 01:04:52,720 TO SPEAK OF THE IACC, THEN 1917 01:04:52,720 --> 01:04:53,720 THAT'S COMPLETELY RATIONAL. 1918 01:04:53,720 --> 01:04:56,760 >> YEAH, AND WE MIGHT BE ABLE TO 1919 01:04:56,760 --> 01:04:58,040 ADDRESS SOME OF THAT IN JUST HOW 1920 01:04:58,040 --> 01:05:02,440 WE TALK ABOUT IT. 1921 01:05:02,440 --> 01:05:03,840 BUT I AGREE, IT MIGHT BE 1922 01:05:03,840 --> 01:05:07,920 SLIGHTLY CONFUSING. 1923 01:05:07,920 --> 01:05:09,440 NEXT, LET'S SEE, WE'VE GOT ABOUT 1924 01:05:09,440 --> 01:05:11,040 5 MINUTES LEFT, I THINK WE CAN 1925 01:05:11,040 --> 01:05:12,840 GET THROUGH FOUR MORE QUESTIONS, 1926 01:05:12,840 --> 01:05:16,440 AND THEN WE WILL TAKE A BREAK. 1927 01:05:16,440 --> 01:05:18,520 SO DENA. 1928 01:05:18,520 --> 01:05:20,680 >> JUST REAL QUICKLY, I JUST 1929 01:05:20,680 --> 01:05:23,120 WANTED TO SAY THAT THERE ARE -- 1930 01:05:23,120 --> 01:05:24,400 LIKE I'M IN THE STATE OF 1931 01:05:24,400 --> 01:05:26,360 NEW YORK, AND IF YOU DON'T HAVE 1932 01:05:26,360 --> 01:05:28,000 A DIAGNOSIS BEFORE THE AGE OF 18 1933 01:05:28,000 --> 01:05:34,160 IN THE STATE OF NEW YORK, YOU 1934 01:05:34,160 --> 01:05:35,280 EXPERIENCE HUGE ADMINISTRATIVE 1935 01:05:35,280 --> 01:05:36,560 BURDEN IN TRYING TO PROVE THAT 1936 01:05:36,560 --> 01:05:39,560 YOU WERE AUTISTIC BEFORE THE AGE 1937 01:05:39,560 --> 01:05:41,240 OF 18. 1938 01:05:41,240 --> 01:05:42,800 AND FOR MANY OF US, THERE WAS NO 1939 01:05:42,800 --> 01:05:44,560 DIAGNOSIS AVAILABLE WHEN WE WERE 1940 01:05:44,560 --> 01:05:46,280 THAT AGE. 1941 01:05:46,280 --> 01:05:47,600 THERE IS VERY LITTLE IN REGARD 1942 01:05:47,600 --> 01:05:50,560 TO RECORD-KEEPING ABOUT THROWS 1943 01:05:50,560 --> 01:05:53,840 THINGS, AND THAT MEANS AN ENTIRE 1944 01:05:53,840 --> 01:05:56,560 SEGMENT OF OUR POPULATION IS 1945 01:05:56,560 --> 01:05:57,920 DENIED ACCESS TO SERVICES. 1946 01:05:57,920 --> 01:05:59,400 AND IN ORDER TO GET THOSE 1947 01:05:59,400 --> 01:06:01,280 SERVICES AND TO CREATE THAT CASE 1948 01:06:01,280 --> 01:06:03,240 FILE TO PROVE EVIDENCE OF NEED, 1949 01:06:03,240 --> 01:06:05,120 YOU HAVE TO BASICALLY BE 1950 01:06:05,120 --> 01:06:05,760 NON-AUTISTIC. 1951 01:06:05,760 --> 01:06:07,840 LIKE YOU HAVE TO HAVE HUGE 1952 01:06:07,840 --> 01:06:09,040 EXECUTIVE FUNCTION, YOU HAVE TO 1953 01:06:09,040 --> 01:06:10,800 BE ABLE TO TRACK DOWN RECORDS. 1954 01:06:10,800 --> 01:06:14,400 IT'S AN UNDUE BURDEN, AND I 1955 01:06:14,400 --> 01:06:15,840 WOULD PROJECT THAT WE SHOULD 1956 01:06:15,840 --> 01:06:17,680 ASSERT THAT IF A PERSON 1957 01:06:17,680 --> 01:06:18,880 SUCCESSFULLY OBTAINS A 1958 01:06:18,880 --> 01:06:20,200 DEVELOPMENTAL ASSESSMENT, WHICH 1959 01:06:20,200 --> 01:06:21,960 IS ANOTHER BARRIER IN ITSELF, 1960 01:06:21,960 --> 01:06:24,560 BUT IF THEY HAVE ONE, THEY HAVE 1961 01:06:24,560 --> 01:06:26,080 CONFIRMATION OF A DIAGNOSIS, 1962 01:06:26,080 --> 01:06:30,600 THEY SHOULD BE ELIGIBLE FOR AT 1963 01:06:30,600 --> 01:06:32,840 LEAST SOME BASIC SERVICES, 10 1964 01:06:32,840 --> 01:06:38,240 HOURS A WEEK TO 10 HOURS A 1965 01:06:38,240 --> 01:06:39,040 MONTH, LIKE SOMETHING SHOULD BE 1966 01:06:39,040 --> 01:06:39,360 AVAILABLE. 1967 01:06:39,360 --> 01:06:40,760 I THINK ELIMINATING PEOPLE BASED 1968 01:06:40,760 --> 01:06:42,640 ON A LACK OF RECORDS OR BASED ON 1969 01:06:42,640 --> 01:06:52,040 I.Q. ALONE IS JUST UNTENABLE. 1970 01:06:52,040 --> 01:06:53,680 >> THANK YOU, DENA. 1971 01:06:53,680 --> 01:06:55,080 THAT IS AN IMPORTANT ISSUE. 1972 01:06:55,080 --> 01:06:56,200 IT CAME UP IN THE CONTEXT OF 1973 01:06:56,200 --> 01:06:57,200 WHEN WE TALKED ABOUT 1974 01:06:57,200 --> 01:06:57,960 HOMELESSNESS AND IT WAS BROUGHT 1975 01:06:57,960 --> 01:06:59,840 TO OUR ATTENTION WHEN WE 1976 01:06:59,840 --> 01:07:01,120 DISCUSSED HOMELESSNESS THAT SOME 1977 01:07:01,120 --> 01:07:02,240 INDIVIDUALS, WHO ARE ADULTS, 1978 01:07:02,240 --> 01:07:03,200 HAVE DIFFICULTY CONNECTING BACK 1979 01:07:03,200 --> 01:07:04,640 TO THE SERVICE SYSTEM IF THEY 1980 01:07:04,640 --> 01:07:06,480 DIDN'T HAVE THE DIAGNOSIS 1981 01:07:06,480 --> 01:07:07,600 PREVIOUSLY OR THEY WEREN'T 1982 01:07:07,600 --> 01:07:12,080 CONNECTED TO SERVICES. 1983 01:07:12,080 --> 01:07:13,360 SO WE WILL MAKE SURE WE SAY 1984 01:07:13,360 --> 01:07:14,160 SOMETHING ABOUT THAT IN THE 1985 01:07:14,160 --> 01:07:14,360 PLAN. 1986 01:07:14,360 --> 01:07:18,760 >> THANK YOU. 1987 01:07:18,760 --> 01:07:20,160 >> WE'LL TAKE A COMMENT FROM HAR 1988 01:07:20,160 --> 01:07:22,680 EE. 1989 01:07:22,680 --> 01:07:22,880 HARI. 1990 01:07:22,880 --> 01:07:23,640 >> HI THERE. 1991 01:07:23,640 --> 01:07:25,960 I RECEIVED SOME COMMENTS FROM 1992 01:07:25,960 --> 01:07:28,040 HARI, I DON'T KNOW IF HARI WANTS 1993 01:07:28,040 --> 01:07:29,240 TO SPEAK OR I'LL READ THE 1994 01:07:29,240 --> 01:07:32,960 COMMENTS. 1995 01:07:32,960 --> 01:07:36,040 HE SAYS, ON AGING, WE DON'T HAVE 1996 01:07:36,040 --> 01:07:38,400 ENOUGH INFORMATION, BUT WE CAN 1997 01:07:38,400 --> 01:07:39,760 EXPECT ALL THE LONG-TERM EFFECTS 1998 01:07:39,760 --> 01:07:41,800 OF THE PSYCHOTROPIC MEDICATIONS 1999 01:07:41,800 --> 01:07:44,560 THAT MANY ARE ON SINCE CHILDHOOD 2000 01:07:44,560 --> 01:07:46,040 TO ADDRESS BEHAVIORS. 2001 01:07:46,040 --> 01:07:49,440 THESE INCLUDE LIVER ISSUES, 2002 01:07:49,440 --> 01:07:51,640 MEMORY ISSUES, MOVEMENT ISSUES. 2003 01:07:51,640 --> 01:07:53,720 AND COMPOUNDING AGING ISSUES 2004 01:07:53,720 --> 01:07:55,120 FACED BY THE NON-AUTISTIC 2005 01:07:55,120 --> 01:07:59,760 POPULATION. 2006 01:07:59,760 --> 01:08:00,280 >> THANK YOU. 2007 01:08:00,280 --> 01:08:02,040 THANK YOU FOR THAT, HARI. 2008 01:08:02,040 --> 01:08:03,680 AND YES, THERE ARE A LOT OF 2009 01:08:03,680 --> 01:08:05,280 DIFFERENT ISSUES RELATED TO AGE, 2010 01:08:05,280 --> 01:08:07,480 AND WE'LL TRY TO DISTILL OUT 2011 01:08:07,480 --> 01:08:08,640 SOME IN THE SECTION THAT WE'LL 2012 01:08:08,640 --> 01:08:13,320 HAVE ON OLDER ADULTHOOD. 2013 01:08:13,320 --> 01:08:14,200 BUT IF YOU HAVE OTHER COMMENT 2014 01:08:14,200 --> 01:08:15,480 ABOUT IT, YOU CAN FEEL FREE TO 2015 01:08:15,480 --> 01:08:16,240 SEND THEM. 2016 01:08:16,240 --> 01:08:20,320 SO WE'LL TAKE A COUPLE MORE 2017 01:08:20,320 --> 01:08:21,720 COMMENTS, AND THEN I WILL GIVE A 2018 01:08:21,720 --> 01:08:22,720 LAST CHANCE TO ANYBODY WHO 2019 01:08:22,720 --> 01:08:23,600 HASN'T SPOKEN SO FAR IN THE 2020 01:08:23,600 --> 01:08:24,200 SESSION. 2021 01:08:24,200 --> 01:08:25,560 SO SCOTT? 2022 01:08:25,560 --> 01:08:30,800 >> YEAH, THANKS, SUSAN. 2023 01:08:30,800 --> 01:08:33,000 SO FOR THE EMPLOYMENT SECTION 2024 01:08:33,000 --> 01:08:35,080 COULD BE BOLSTERED AS FAR AS 2025 01:08:35,080 --> 01:08:38,120 PUTTING MORE IN THERE ON ACCESS 2026 01:08:38,120 --> 01:08:42,080 TO WORK-BASED LEARNING, AND 2027 01:08:42,080 --> 01:08:43,320 INTERNSHIP, APPRENTICESHIPS, ET 2028 01:08:43,320 --> 01:08:45,560 CETERA, FOR SUPPORTING 2029 01:08:45,560 --> 01:08:47,520 EMPLOYMENT ACCESS AND CAREER 2030 01:08:47,520 --> 01:08:48,760 PURSUITS, THE WORD "CAREER" 2031 01:08:48,760 --> 01:08:50,720 SHOULD BE IN THERE. 2032 01:08:50,720 --> 01:08:52,760 FOR AUTISTIC ADOLESCENTS IN 2033 01:08:52,760 --> 01:08:54,400 MIDDLE SCHOOL, HIGH SCHOOL, AND 2034 01:08:54,400 --> 01:08:56,200 AUTISTIC ADULTS THROUGHOUT THE 2035 01:08:56,200 --> 01:08:56,840 LIFE COURSE. 2036 01:08:56,840 --> 01:08:58,240 SO LIKE THAT SHOULD START -- AND 2037 01:08:58,240 --> 01:08:59,360 I DON'T KNOW IF SOME OF THAT 2038 01:08:59,360 --> 01:09:04,480 WOULD FIT INTO Q5 VERSUS Q6. 2039 01:09:04,480 --> 01:09:07,080 BETTER ACCESS TO WORK 2040 01:09:07,080 --> 01:09:09,080 OPPORTUNITIES IN HIGH SCHOOL HAS 2041 01:09:09,080 --> 01:09:14,080 MADE A MAJOR DIFFERENCE, DREXEL 2042 01:09:14,080 --> 01:09:15,520 FINDS IN RESEARCH THERE'S A HUGE 2043 01:09:15,520 --> 01:09:17,080 DISPARITY IN FOLKS WHO CAN 2044 01:09:17,080 --> 01:09:18,040 ACCESS INTERNSHIPS AND OTHER 2045 01:09:18,040 --> 01:09:22,120 FORMS OF WORK-BASED LEARNING IN 2046 01:09:22,120 --> 01:09:23,320 YOUTH AND YOUNG ADULTHOOD THAT 2047 01:09:23,320 --> 01:09:24,280 LEADS TO BETTER OPPORTUNITIES 2048 01:09:24,280 --> 01:09:25,360 FOR EMPLOYMENT ACROSS THE 2049 01:09:25,360 --> 01:09:26,560 LIFESPAN, SO YOU SEE THAT 2050 01:09:26,560 --> 01:09:27,800 DISPARITY FOR A LOT OF AUTISTIC 2051 01:09:27,800 --> 01:09:29,200 PEOPLE WHO HAVE ACCESS TO 2052 01:09:29,200 --> 01:09:32,480 EMPLOYMENT AND SOME WHO DON'T. 2053 01:09:32,480 --> 01:09:33,720 AND I CAN SEND YOU THE STUDIES 2054 01:09:33,720 --> 01:09:35,560 ON THAT THAT BACK UP AS FAR AS 2055 01:09:35,560 --> 01:09:38,200 THE NEED FOR SUPPORTING BETTER 2056 01:09:38,200 --> 01:09:40,800 ACCESS FOR WORK-BASED LEARNING, 2057 01:09:40,800 --> 01:09:42,760 EMPLOYMENT ACCESS, AND THINK, 2058 01:09:42,760 --> 01:09:44,280 FRANKLY, MORE RESEARCH ON BEST 2059 01:09:44,280 --> 01:09:46,160 PRACTICES THAT ARE 2060 01:09:46,160 --> 01:09:48,240 EVIDENCE-BASED THAT CAN HELP 2061 01:09:48,240 --> 01:09:49,520 EMPOWER FOLKS TO ACCESS SUPPORTS 2062 01:09:49,520 --> 01:09:52,520 THEY NEED TO THRIVE IN GAINFUL 2063 01:09:52,520 --> 01:09:55,000 EMPLOYMENT AND CAREER PATHS 2064 01:09:55,000 --> 01:09:55,560 ACROSS ADOLESCENCE AND ADULT 2065 01:09:55,560 --> 01:09:56,560 LIFE. 2066 01:09:56,560 --> 01:09:57,760 THERE HAVE BEEN SOME RECENT 2067 01:09:57,760 --> 01:09:58,600 LITERATURE REVIEWS THAT HAVE 2068 01:09:58,600 --> 01:09:59,520 BEEN RELEASED IN THE LAST 2069 01:09:59,520 --> 01:10:00,920 SEVERAL YEARS THAT ARE VERY 2070 01:10:00,920 --> 01:10:02,000 DISAPPOINTING THAT SHOW THAT 2071 01:10:02,000 --> 01:10:03,120 BASICALLY THE RESEARCH 2072 01:10:03,120 --> 01:10:04,760 LITERATURE NEEDS TO BE EXPANDED 2073 01:10:04,760 --> 01:10:06,040 AND ENHANCED SIGNIFICANTLY ON 2074 01:10:06,040 --> 01:10:07,400 EMPLOYMENT FOR AUTISTIC PEOPLE 2075 01:10:07,400 --> 01:10:08,600 ACROSS THE LIFESPAN THAT WE JUST 2076 01:10:08,600 --> 01:10:10,320 DON'T HAVE AS MUCH QUALITY THERE 2077 01:10:10,320 --> 01:10:12,160 AS WE SHOULD IN THE RESEARCH. 2078 01:10:12,160 --> 01:10:14,680 AND IT IS NOT COVERING FOCUSES 2079 01:10:14,680 --> 01:10:16,880 LIKE APPRENTICESHIPS AND 2080 01:10:16,880 --> 01:10:18,280 INTERNSHIPS AND MATCHING 2081 01:10:18,280 --> 01:10:20,160 EMPLOYMENT TO FIT FOLKS' 2082 01:10:20,160 --> 01:10:21,560 INTERESTS, SKILLS AND TALENTS 2083 01:10:21,560 --> 01:10:22,920 WITH TARGETED SUPPORTS AND 2084 01:10:22,920 --> 01:10:28,160 SERVICES THAT CAN HELP ADDRESS 2085 01:10:28,160 --> 01:10:29,480 BARRIERS AND DIFFICULTIES FOLKS 2086 01:10:29,480 --> 01:10:29,960 EXPERIENCE, AS WELL AS 2087 01:10:29,960 --> 01:10:31,520 PARTNERING WITH AUTISTIC PEOPLE 2088 01:10:31,520 --> 01:10:32,840 JUST LIKE WE SEE WITH COMMUNITY 2089 01:10:32,840 --> 01:10:37,640 BASED PARTICIPATORY RESEARCH AND 2090 01:10:37,640 --> 01:10:38,560 PARTICIPATORY ACTS AND RESEARCH 2091 01:10:38,560 --> 01:10:39,000 IN THAT SPACE. 2092 01:10:39,000 --> 01:10:40,040 I ALSO WANTED TO MENTION A 2093 01:10:40,040 --> 01:10:41,040 COUPLE OTHER THINGS ON SOME 2094 01:10:41,040 --> 01:10:42,080 OTHER TOPICS THAT WERE MENTIONED 2095 01:10:42,080 --> 01:10:44,040 AS FAR AS THE PARENTING AND 2096 01:10:44,040 --> 01:10:44,640 VETERANS ISSUES. 2097 01:10:44,640 --> 01:10:49,280 I KNOW ON THE VETERANS, AND FOR 2098 01:10:49,280 --> 01:10:50,360 CONTEXT, IT'S ALMOST LIKE A 2099 01:10:50,360 --> 01:10:52,280 DON'T ASK-DON'T TELETYPE OF A 2100 01:10:52,280 --> 01:10:53,920 THING WITH AUTISTIC PEOPLE THAT 2101 01:10:53,920 --> 01:10:55,600 FOLKS ARE AFRAID TO TALK ABOUT 2102 01:10:55,600 --> 01:10:56,560 THEIR AUTISM BECAUSE TECHNICALLY 2103 01:10:56,560 --> 01:10:58,240 THERE'S A MEDICAL RULEOUT IN THE 2104 01:10:58,240 --> 01:10:59,840 HANDBOOK FOR THE MILITARY AS FAR 2105 01:10:59,840 --> 01:11:02,480 AS SERVING IN ACTIVE DUTY. 2106 01:11:02,480 --> 01:11:03,920 IT'S PARALLEL TO A LOT OF OTHER 2107 01:11:03,920 --> 01:11:05,000 DISABILITIES HAVE THAT 2108 01:11:05,000 --> 01:11:07,560 COMPLEXITY TOO, ALTHOUGH THAT'S 2109 01:11:07,560 --> 01:11:08,400 STARTING TO POTENTIALLY CHANGE 2110 01:11:08,400 --> 01:11:08,960 OVER TIME. 2111 01:11:08,960 --> 01:11:09,920 THERE HAS NOW BEEN SOME 2112 01:11:09,920 --> 01:11:11,240 DISCUSSIONS ABOUT HAVING A 2113 01:11:11,240 --> 01:11:12,320 BETTER WAIVER PROCESS 2114 01:11:12,320 --> 01:11:13,400 POTENTIALLY FOR SOME OF THE 2115 01:11:13,400 --> 01:11:15,080 AGENCIES IN THE DEPARTMENT OF 2116 01:11:15,080 --> 01:11:17,240 DEFENSE FOR FOLKS WHO CAN SERVE 2117 01:11:17,240 --> 01:11:19,000 WHO ARE ABLE TO SERVE AND WANT 2118 01:11:19,000 --> 01:11:20,960 TO SERVE, AND THEN YOU HAVE SOME 2119 01:11:20,960 --> 01:11:22,400 VETERANS WHO MAY OR MAY NOT HAVE 2120 01:11:22,400 --> 01:11:23,800 KNOWN ABOUT THEIR AUTISM OR JUST 2121 01:11:23,800 --> 01:11:26,240 DIDN'T TALK ABOUT IT FOR THESE 2122 01:11:26,240 --> 01:11:27,280 COMPLEXITIES, WHO NOW ARE 2123 01:11:27,280 --> 01:11:30,120 TALKING ABOUT THEIR AUTISM AFTER 2124 01:11:30,120 --> 01:11:30,800 THEY'VE LEFT SERVICE IN THE 2125 01:11:30,800 --> 01:11:32,560 MILITARY. 2126 01:11:32,560 --> 01:11:33,520 SO I THINK THAT'S SOMETHING 2127 01:11:33,520 --> 01:11:35,320 MAYBE TO HAVE IN THERE. 2128 01:11:35,320 --> 01:11:36,760 JUST ALSO IF ONLY JUST BRIEFLY 2129 01:11:36,760 --> 01:11:41,200 TO MENTION THAT US A AUTISTIC E 2130 01:11:41,200 --> 01:11:43,560 HAVE SERVED IN OUR ARMED FORCES 2131 01:11:43,560 --> 01:11:45,040 AND THERE ARE AUTISTIC PEOPLE 2132 01:11:45,040 --> 01:11:46,600 WHO ARE VETERANS WHO'VE 2133 01:11:46,600 --> 01:11:48,480 EXPERIENCED TRAUMA AND PTSD, ET 2134 01:11:48,480 --> 01:11:50,920 CETERA. 2135 01:11:50,920 --> 01:11:54,320 AND THEN -- 2136 01:11:54,320 --> 01:11:55,320 >> RAISE YOUR HAND AGAIN. 2137 01:11:55,320 --> 01:11:57,720 >> CAN SOMEONE GO ON MUTE? 2138 01:11:57,720 --> 01:12:00,840 SO ALSO THE PARENTING ASPECT AS 2139 01:12:00,840 --> 01:12:02,760 FAR AS I AGREE AS FAR AS 2140 01:12:02,760 --> 01:12:05,040 PARENTING, MARRIAGE, LIKE 2141 01:12:05,040 --> 01:12:06,480 ROMANTIC RELATIONSHIP, LIKE FULL 2142 01:12:06,480 --> 01:12:08,120 ACCESS FOR FOLKS AND MORE 2143 01:12:08,120 --> 01:12:09,440 RESEARCH KIND OF IN THAT SPACE. 2144 01:12:09,440 --> 01:12:11,080 WE HAVE THE -- THIS FITS INTO 2145 01:12:11,080 --> 01:12:13,960 WHAT WE HAVE WITH THIS Q6 AREA, 2146 01:12:13,960 --> 01:12:16,560 IS THAT PETER PAN PHENOMENON 2147 01:12:16,560 --> 01:12:18,280 HONESTLY WITH RESEARCH ON AUTISM 2148 01:12:18,280 --> 01:12:19,800 AND PRACTICES, SUPPORTS AND 2149 01:12:19,800 --> 01:12:20,160 POLICIES. 2150 01:12:20,160 --> 01:12:22,560 WE SEE SUCH A DROPOFF, BECAUSE 2151 01:12:22,560 --> 01:12:24,000 HISTORICALLY PEOPLE BELIEVE THAT 2152 01:12:24,000 --> 01:12:26,040 I GUESS AUTISTIC PEOPLE 2153 01:12:26,040 --> 01:12:26,840 DISAPPEARED OR SOMETHING LIKE 2154 01:12:26,840 --> 01:12:28,800 THAT AFTER LIKE EARLY CHILDHOOD. 2155 01:12:28,800 --> 01:12:30,960 AND IT'S CHANGED SOMEWHAT OVER 2156 01:12:30,960 --> 01:12:32,400 TIME, IT'S GOTTEN BETTER IN 2157 01:12:32,400 --> 01:12:33,400 RESEARCH PRACTICES AND POLICY, 2158 01:12:33,400 --> 01:12:35,120 BUT WE HAVE A WAYS TO GO IN THAT 2159 01:12:35,120 --> 01:12:36,760 SPACE AND I THINK PEOPLE DON'T 2160 01:12:36,760 --> 01:12:38,920 REALIZE THAT AUTISTIC PEOPLE ARE 2161 01:12:38,920 --> 01:12:41,800 PARENTS, YOU KNOW, WANT TO RAISE 2162 01:12:41,800 --> 01:12:42,760 FAMILIES, AND NEED SUPPORTS AND 2163 01:12:42,760 --> 01:12:45,080 SERVICES TO BE ABLE TO DO SO AND 2164 01:12:45,080 --> 01:12:47,480 HAVE EQUAL ACCESS IN THAT SPACE, 2165 01:12:47,480 --> 01:12:49,280 EQUAL ACCESS TO MARRY, ET 2166 01:12:49,280 --> 01:12:51,000 CETERA, AND NOT BE DISCRIMINATED 2167 01:12:51,000 --> 01:12:54,160 AGAINST, AND THAT NCD REPORT 2168 01:12:54,160 --> 01:12:56,040 FROM 2012 IS REALLY HELPFUL FOR 2169 01:12:56,040 --> 01:12:57,640 FRAMING THAT ISSUE AS FAR AS 2170 01:12:57,640 --> 01:12:58,440 CROSS DISABILITY AND GIVING US A 2171 01:12:58,440 --> 01:13:00,280 HINT OF WHAT SHOULD BE SUPPORTED 2172 01:13:00,280 --> 01:13:01,720 FOR AUTISTIC PEOPLE, BUT WE 2173 01:13:01,720 --> 01:13:02,800 DON'T HAVE RESEARCH LITERATURE 2174 01:13:02,800 --> 01:13:04,960 ON THAT PROBABLY BECAUSE OF 2175 01:13:04,960 --> 01:13:07,400 BIASES AND PEOPLE ALSO JUST 2176 01:13:07,400 --> 01:13:08,720 DON'T KNOW THAT IT'S IMPORTANT 2177 01:13:08,720 --> 01:13:11,320 TO ADDRESS AND SO IN TERMS OF 2178 01:13:11,320 --> 01:13:12,680 ENSURING AUTISTIC PEOPLE CAN 2179 01:13:12,680 --> 01:13:13,960 HAVE THE SUPPORTS NEEDED TO 2180 01:13:13,960 --> 01:13:15,960 RAISE FAMILIES AS FOLKS WANT TO, 2181 01:13:15,960 --> 01:13:17,240 YOU KNOW, AND BE ABLE TO 2182 01:13:17,240 --> 01:13:18,560 PARTICIPATE IN RELATIONSHIPS AND 2183 01:13:18,560 --> 01:13:19,680 SOCIAL RELATIONSHIPS AND, YOU 2184 01:13:19,680 --> 01:13:20,760 KNOW, IT'S PART OF QUALITY OF 2185 01:13:20,760 --> 01:13:22,320 LIFE AND HEALTH AND WELLNESS, IS 2186 01:13:22,320 --> 01:13:25,920 THAT HUMANS ARE SOCIAL BEINGS, 2187 01:13:25,920 --> 01:13:29,960 AND AUTISTIC PEOPLE OFTEN THRIVE 2188 01:13:29,960 --> 01:13:32,240 JUST AS MUCH AS NON-AUTISTIC 2189 01:13:32,240 --> 01:13:33,560 PEOPLE BUT MAY NEED SUPPORT AND 2190 01:13:33,560 --> 01:13:34,760 SERVICES THAT ARE TAILORED TO BE 2191 01:13:34,760 --> 01:13:36,640 ABLE TO HELP FOLKS ACCESS 2192 01:13:36,640 --> 01:13:38,080 OPPORTUNITIES FOR SOCIAL LIFE, 2193 01:13:38,080 --> 01:13:39,600 INCLUDING, AGAIN, YOU KNOW, 2194 01:13:39,600 --> 01:13:42,000 RELATIONSHIPS, FAMILIES, BEING 2195 01:13:42,000 --> 01:13:43,640 ABLE TO PARTICIPATE AS A PARENT 2196 01:13:43,640 --> 01:13:45,800 AND BE ABLE TO, YOU KNOW, 2197 01:13:45,800 --> 01:13:48,000 PARTICIPATE ALSO AS UNCLES, 2198 01:13:48,000 --> 01:13:50,320 AUNTS, ET CETERA, IN TERMS OF 2199 01:13:50,320 --> 01:13:51,960 IMMEDIATE FAMILY, EXTENDED 2200 01:13:51,960 --> 01:13:52,280 FAMILY. 2201 01:13:52,280 --> 01:13:53,760 WE HAVE NO RESEARCH LITERATURE 2202 01:13:53,760 --> 01:13:55,280 ON THAT EITHER AS HOW AUTISTIC 2203 01:13:55,280 --> 01:13:57,400 PEOPLE IN ADULT LIFE CROSS 2204 01:13:57,400 --> 01:13:59,720 CONNECT TO THEIR FAMILIES 2205 01:13:59,720 --> 01:14:01,360 OVERALL AND HOW IT CAN ENHANCE 2206 01:14:01,360 --> 01:14:04,200 THEIR SOCIAL LIFE WITH SUPPORTS 2207 01:14:04,200 --> 01:14:05,720 AND THE RICHNESS AS FAR AS 2208 01:14:05,720 --> 01:14:11,200 QUALITY OF LIFE. 2209 01:14:11,200 --> 01:14:12,720 >> THANK YOU, SCOTT, FOR ALL 2210 01:14:12,720 --> 01:14:13,160 THOSE COMMENTS. 2211 01:14:13,160 --> 01:14:13,920 VERY HELPFUL. 2212 01:14:13,920 --> 01:14:15,800 AND WE'LL TAKE A COMMENT FROM 2213 01:14:15,800 --> 01:14:17,320 IVANOVA ?IT. 2214 01:14:17,320 --> 01:14:19,400 I'IVANOVA SMITH. 2215 01:14:19,400 --> 01:14:21,120 >> THIS IS IVANOVA SMITH. 2216 01:14:21,120 --> 01:14:25,760 MY COMMENT IS AROUND JUSTICE. 2217 01:14:25,760 --> 01:14:28,240 -- EMERGENCY PREPAREDNESS AND 2218 01:14:28,240 --> 01:14:31,560 PREMATURE MORTALITY, AND WHAT 2219 01:14:31,560 --> 01:14:34,600 SUPPORTS AND RESEARCH HELPING 2220 01:14:34,600 --> 01:14:37,560 AUTISTIC PEOPLE WHO ARE 2221 01:14:37,560 --> 01:14:39,280 STRUGGLING WITH THE JUSTICE 2222 01:14:39,280 --> 01:14:42,680 SYSTEM, CRIMINAL JUSTICE SYSTEM, 2223 01:14:42,680 --> 01:14:45,560 AND SO THEY'RE GETTING A FAIR 2224 01:14:45,560 --> 01:14:49,720 TRIAL AND THAT BEING SUPPORTED 2225 01:14:49,720 --> 01:14:51,120 IF THEY'RE HAVING TO BE 2226 01:14:51,120 --> 01:14:51,480 INCARCERATED. 2227 01:14:51,480 --> 01:14:54,160 THANK YOU. 2228 01:14:54,160 --> 01:14:57,920 >> THANK YOU VERY MUCH, IVANOVA. 2229 01:14:57,920 --> 01:14:59,200 AND I'LL GIVE ONE LAST CLANS TO 2230 01:14:59,200 --> 01:15:04,000 ANCHANCE TOANYBODY WHO HAS NOT E 2231 01:15:04,000 --> 01:15:06,200 TO SPEAK ON ANYTHING SO FAR TO 2232 01:15:06,200 --> 01:15:06,480 QUESTION 6? 2233 01:15:06,480 --> 01:15:07,040 >> YES. 2234 01:15:07,040 --> 01:15:08,680 >> SO FOR PEOPLE WHO HAVE NOT 2235 01:15:08,680 --> 01:15:10,360 SPOKEN SO FAR. 2236 01:15:10,360 --> 01:15:12,440 >> YES. 2237 01:15:12,440 --> 01:15:13,840 >> WHO'S SPEAKING? 2238 01:15:13,840 --> 01:15:14,600 >> HI. 2239 01:15:14,600 --> 01:15:16,680 CAN YOU HEAR ME? 2240 01:15:16,680 --> 01:15:17,640 CAN YOU HEAR ME NOW? 2241 01:15:17,640 --> 01:15:18,520 >> I CAN HEAR YOU. 2242 01:15:18,520 --> 01:15:20,280 I THOUGHT YOU HAD GIVEN COMMENTS 2243 01:15:20,280 --> 01:15:21,600 ALREADY, BUT GO AHEAD AND THEN 2244 01:15:21,600 --> 01:15:22,600 WE'LL GO TO BREAK. 2245 01:15:22,600 --> 01:15:24,600 >> I HAVEN'T ON THIS SECTION. 2246 01:15:24,600 --> 01:15:26,200 IN FACT, I WAS TRYING TO GET IN 2247 01:15:26,200 --> 01:15:27,840 ON THE LAST SECTION. 2248 01:15:27,840 --> 01:15:28,760 I'VE HAD TECHNICAL DIFFICULTIES 2249 01:15:28,760 --> 01:15:31,760 FOR THE LAST HALF-HOUR. 2250 01:15:31,760 --> 01:15:32,760 THERE WERE SEVERAL COMMENTS THAT 2251 01:15:32,760 --> 01:15:35,400 I WOULD LIKE TO MAKE. 2252 01:15:35,400 --> 01:15:38,360 I APPRECIATE SO VERY MUCH 2253 01:15:38,360 --> 01:15:40,080 SCOTT'S INSIGHTS INTO ALL OF 2254 01:15:40,080 --> 01:15:41,400 THIS AND SOME OF THE OTHER 2255 01:15:41,400 --> 01:15:41,640 COMMENTS. 2256 01:15:41,640 --> 01:15:43,360 AND I DO NEED TO TAKE A MOMENT 2257 01:15:43,360 --> 01:15:46,320 BECAUSE THIS IS OUR ENTIRE 2258 01:15:46,320 --> 01:15:49,400 FIELD, AND WE STARTED IN ON THIS 2259 01:15:49,400 --> 01:15:50,560 AREA 15 YEARS AGO, AND SO MANY 2260 01:15:50,560 --> 01:15:53,000 OF THE THINGS THAT YOU WERE 2261 01:15:53,000 --> 01:15:54,440 MENTIONING HAVE BEEN ONGOING, 2262 01:15:54,440 --> 01:15:57,360 INCLUDING THE LACK OF RESEARCH 2263 01:15:57,360 --> 01:15:58,680 AND TRYING TO GET DATA. 2264 01:15:58,680 --> 01:16:00,440 IT BEEN CHALLENGING, AND I THINK 2265 01:16:00,440 --> 01:16:02,360 THIS WOULD BE SOMETHING THAT 2266 01:16:02,360 --> 01:16:07,200 OTHERS THAT ARE LIST EN LISTENIO 2267 01:16:07,200 --> 01:16:07,960 COULD RELATE TO AS WELL. 2268 01:16:07,960 --> 01:16:09,280 IT IS HARD FOR AUTISM 2269 01:16:09,280 --> 01:16:10,280 ORGANIZATIONS TO GET FUNDING 2270 01:16:10,280 --> 01:16:11,400 BECAUSE THERE'S NOT THE RESEARCH 2271 01:16:11,400 --> 01:16:13,320 TO WARRANT GETTING IN AND 2272 01:16:13,320 --> 01:16:16,840 GETTING GRANTS. 2273 01:16:16,840 --> 01:16:18,440 AND I THINK THAT IS HAMPERING 2274 01:16:18,440 --> 01:16:19,800 GREATLY THE THINGS THAT ARE 2275 01:16:19,800 --> 01:16:21,080 HAPPENING IN THE LIFESPAN 2276 01:16:21,080 --> 01:16:24,920 ISSUES. 2277 01:16:24,920 --> 01:16:27,680 IN 21 AND OVER. 2278 01:16:27,680 --> 01:16:28,760 AND THAT HAS BEEN OUR TARGET 2279 01:16:28,760 --> 01:16:29,760 GROUP FROM THE ONSET. 2280 01:16:29,760 --> 01:16:31,160 IN FACT, WE WERE ONE OF THE 2281 01:16:31,160 --> 01:16:33,120 FIRST IN THE COUNTRY TO LOOK AT 2282 01:16:33,120 --> 01:16:34,760 WHAT WE DEEM AS LIFESPAN, AND 2283 01:16:34,760 --> 01:16:38,520 WE'VE LOOKED AT THAT BECAUSE 2284 01:16:38,520 --> 01:16:41,640 LIFESPAN AFTER HIGH SCHOOL, 2285 01:16:41,640 --> 01:16:42,880 THAT'S WHEN SERVICES END AND 2286 01:16:42,880 --> 01:16:43,960 THAT'S THE WAY WE HAD LOOKED AT 2287 01:16:43,960 --> 01:16:44,280 IT. 2288 01:16:44,280 --> 01:16:45,440 I THINK THERE ARE A NUMBER OF 2289 01:16:45,440 --> 01:16:45,920 POINTS. 2290 01:16:45,920 --> 01:16:49,320 I WILL CONSOLIDATEBECAUSE THEREL 2291 01:16:49,320 --> 01:16:50,440 COMMENTS HERE, AND SCOTT, YOU 2292 01:16:50,440 --> 01:16:52,040 HAPPENED TO BRING A LOT OF THESE 2293 01:16:52,040 --> 01:16:53,480 THINGS TO THE FOREFRONT. 2294 01:16:53,480 --> 01:16:56,520 I THINK FUNDING FOR RESEARCH, SO 2295 01:16:56,520 --> 01:16:59,240 WE CAN GET INTO THESE QUESTIONS, 2296 01:16:59,240 --> 01:17:01,120 SO WE CAN GET THE SUPPORT, SO WE 2297 01:17:01,120 --> 01:17:02,440 CAN GET ADDITIONAL INFORMATION 2298 01:17:02,440 --> 01:17:05,400 IS KIND OF A CYCLE IN THERE, BUT 2299 01:17:05,400 --> 01:17:07,560 WE NEED TO BREAK THROUGH WITH 2300 01:17:07,560 --> 01:17:08,920 THAT. 2301 01:17:08,920 --> 01:17:10,880 I THINK THERE'S A NUMBER OF 2302 01:17:10,880 --> 01:17:12,280 OTHER THINGS THAT WE CAN WORK 2303 01:17:12,280 --> 01:17:13,160 ON, THERE'S A COUPLE OF THINGS 2304 01:17:13,160 --> 01:17:17,320 THAT ARE A LITTLE BIT MORE 2305 01:17:17,320 --> 01:17:18,200 SUPERFICIAL, ALTHOUGH SCOTT WAS 2306 01:17:18,200 --> 01:17:19,200 MENTIONING SOME ASPECTS OF 2307 01:17:19,200 --> 01:17:23,240 THINGS WITH TRANSPORTATION. 2308 01:17:23,240 --> 01:17:25,080 I DO THINK WE NEED TO ENCOURAGE 2309 01:17:25,080 --> 01:17:26,640 PUBLIC SPACES INCLUDING 2310 01:17:26,640 --> 01:17:29,800 BUSINESSES TO HAVE BETTER 2311 01:17:29,800 --> 01:17:31,080 SIGNAGE THAT IS LESS CONFUSING. 2312 01:17:31,080 --> 01:17:33,720 WE'VE WORKED WITH AIRLINES AND 2313 01:17:33,720 --> 01:17:35,720 AIRPORTS FOR THIS PARTICULAR 2314 01:17:35,720 --> 01:17:36,920 REASON, AND WORKING WITH SOME OF 2315 01:17:36,920 --> 01:17:38,880 THE AIRLINES AND HELPING ADULTS 2316 01:17:38,880 --> 01:17:44,560 LEARN HOW TO FLY, AND SIGNAGE IS 2317 01:17:44,560 --> 01:17:45,640 GOING TO BE VERY IMPORTANT. 2318 01:17:45,640 --> 01:17:46,640 I'M JUST HITTING ON A FEW 2319 01:17:46,640 --> 01:17:46,880 THINGS. 2320 01:17:46,880 --> 01:17:49,680 I THINK THERE IS SOMETHING TOO 2321 01:17:49,680 --> 01:17:52,000 THAT HAS COME UP AGAIN AND AGAIN 2322 01:17:52,000 --> 01:17:55,920 IN CONVERSATION ABOUT SOME OF 2323 01:17:55,920 --> 01:17:56,840 THE SERVICES THAT ARE PROVIDED 2324 01:17:56,840 --> 01:17:58,120 WITH GOVERNMENT AGENCIES OR 2325 01:17:58,120 --> 01:18:00,000 THROUGH STATES, UTILIZING 2326 01:18:00,000 --> 01:18:05,240 DEMEANING LANGUAGE, LIKE VOC 2327 01:18:05,240 --> 01:18:06,440 REHAB, WHEN OUR FOLKS ARE BEING 2328 01:18:06,440 --> 01:18:08,640 TRAINED AND WORKED WITH IN JOB 2329 01:18:08,640 --> 01:18:11,800 READINESS OR IN JOBS, TO ASSUME 2330 01:18:11,800 --> 01:18:14,120 THAT THEY NEED TO BE 2331 01:18:14,120 --> 01:18:18,920 REHABILITATED AS SOMEONE, THAT 2332 01:18:18,920 --> 01:18:21,200 CAME ABOUT BECAUSE OF WAR 2333 01:18:21,200 --> 01:18:22,520 INJURIES, AND WE ARE STILL 2334 01:18:22,520 --> 01:18:23,920 UTILIZING IT IN MANY SITUATIONS, 2335 01:18:23,920 --> 01:18:26,120 AND I THINK IT IS VERY 2336 01:18:26,120 --> 01:18:26,400 MISLEADING. 2337 01:18:26,400 --> 01:18:28,520 RATHER THAN GIVING EDUCATION AND 2338 01:18:28,520 --> 01:18:30,200 GUIDANCE AND WITH THE DIGNITY 2339 01:18:30,200 --> 01:18:31,840 THAT COMES ALONG WITH THOSE 2340 01:18:31,840 --> 01:18:36,160 TERMINOLOGIES. 2341 01:18:36,160 --> 01:18:37,160 AND COMMENTS ON THINGS WITH 2342 01:18:37,160 --> 01:18:38,600 AUTISM SPEAKS, I'M GLAD THAT 2343 01:18:38,600 --> 01:18:43,560 AUTISM SPEAKS IS COMING ON 2344 01:18:43,560 --> 01:18:43,840 BOARD. 2345 01:18:43,840 --> 01:18:45,800 BECAUSE WHEN WE TALKED WITH THEM 2346 01:18:45,800 --> 01:18:47,320 14 YEARS AGO, THEY DIDN'T WANT 2347 01:18:47,320 --> 01:18:48,640 TO HAVE ANYTHING TO DO WITH 2348 01:18:48,640 --> 01:18:49,520 ADULTHOOD. 2349 01:18:49,520 --> 01:18:51,080 I'M DELIGHTED THEY'RE IN THE 2350 01:18:51,080 --> 01:18:52,480 FIELD, BUT WE ALL NEED TO PULL 2351 01:18:52,480 --> 01:18:52,760 TOGETHER. 2352 01:18:52,760 --> 01:18:55,760 AND IF WE CAN LOOK AT THIS THING 2353 01:18:55,760 --> 01:18:56,560 HOLISTICALLY, MAYBE WE CAN GET 2354 01:18:56,560 --> 01:18:57,640 THE RESEARCH DONE THAT NEEDS TO 2355 01:18:57,640 --> 01:19:00,000 BE DONE TO HELP INDIVIDUALS, AND 2356 01:19:00,000 --> 01:19:03,440 TO ALSO GET FUNDING FOR US TO 2357 01:19:03,440 --> 01:19:05,280 GET IN DEEPER AND TAKE CARE OF 2358 01:19:05,280 --> 01:19:07,440 MANY, MANY OF THE DETAILS THAT 2359 01:19:07,440 --> 01:19:10,080 WE WERE TALKING ABOUT TODAY. 2360 01:19:10,080 --> 01:19:15,560 AND I KNOW I MADE COMMENTS THAT 2361 01:19:15,560 --> 01:19:18,360 THAT WAS -- THE LAST HALF-HOUR, 2362 01:19:18,360 --> 01:19:19,240 45 MINUTES TRYING TO GET ON. 2363 01:19:19,240 --> 01:19:22,560 >> THANK YOU SO MUCH, JALYNN, 2364 01:19:22,560 --> 01:19:23,640 FOR SHARING YOUR COMMENTS. 2365 01:19:23,640 --> 01:19:25,160 SO THANK YOU, EVERYONE, FOR THIS 2366 01:19:25,160 --> 01:19:25,760 USEFUL DISCUSSION. 2367 01:19:25,760 --> 01:19:27,160 VERY HELPFUL TO HEAR ABOUT ALL 2368 01:19:27,160 --> 01:19:27,920 OF YOUR COMMENTS. 2369 01:19:27,920 --> 01:19:33,920 WE WILL TAKE A 15-MINUTE -- OR 2370 01:19:33,920 --> 01:19:36,240 WE'LL TAKE AN 11-MINUTE BREAK 2371 01:19:36,240 --> 01:19:37,760 AND COME BACK AT 2:30. 2372 01:19:37,760 --> 01:19:41,040 I DON'T WANT TO GIVE SHORT 2373 01:19:41,040 --> 01:19:43,360 SHRIFT TO SEX AND GENDER EQUITY 2374 01:19:43,360 --> 01:19:44,760 AND DISPARITIES AND COVID, SO 2375 01:19:44,760 --> 01:19:46,120 I'LL ASK YOU TO COME BACK AT 2376 01:19:46,120 --> 01:19:47,400 2:30. 2377 01:19:47,400 --> 01:19:48,600 AND IF YOU NEED A COUPLE OF 2378 01:19:48,600 --> 01:19:49,800 EXTRA MINUTES, JUST POP ON 2379 01:19:49,800 --> 01:19:52,200 WHETHER YOU CAN AND WE'LL START 2380 01:19:52,200 --> 01:19:53,640 DISCUSSING SEX AND GENDER NEXT. 2381 01:19:53,640 --> 01:19:59,880 THANK YOU SO MUCH. 2382 01:19:59,880 --> 01:20:10,120 >>WELCOME BACK, EVERYONE. 2383 01:20:10,120 --> 01:20:12,520 AND WE'RE ON QUESTION 7. 2384 01:20:12,520 --> 01:20:18,800 SO WE'LL GO TO QUESTION 7 NEXT. 2385 01:20:18,800 --> 01:20:19,760 QUESTION 7 IS RESEARCH 2386 01:20:19,760 --> 01:20:22,200 INFRASTRUCTURE AND PREVALENCE. 2387 01:20:22,200 --> 01:20:24,680 AND THE PROPOSED QUESTION 7 TEXT 2388 01:20:24,680 --> 01:20:26,560 IS, HOW DO WE EXPAND AND ENHANCE 2389 01:20:26,560 --> 01:20:27,880 RESEARCH INFRASTRUCTURE SYSTEMS 2390 01:20:27,880 --> 01:20:29,520 TO MEET THE NEEDS OF THE AUTISM 2391 01:20:29,520 --> 01:20:36,640 COMMUNITY? 2392 01:20:36,640 --> 01:20:38,040 AND THE TOPICS THAT ARE INCLUDED 2393 01:20:38,040 --> 01:20:41,880 HERE ARE BIOREPOSITORIES. 2394 01:20:41,880 --> 01:20:43,400 DATA INFRASTRUCTURE. 2395 01:20:43,400 --> 01:20:44,760 THE RESEARCH WORKFORCE. 2396 01:20:44,760 --> 01:20:47,120 NOW THE SERVICES WORKFORCE IS IN 2397 01:20:47,120 --> 01:20:48,440 QUESTION 5. 2398 01:20:48,440 --> 01:20:49,640 SO WE'VE ALREADY COVERED THAT 2399 01:20:49,640 --> 01:20:50,840 FOR TODAY. 2400 01:20:50,840 --> 01:20:51,840 ALTHOUGH IF YOU HAVE A COMMENT 2401 01:20:51,840 --> 01:20:55,000 ABOUT IT, YOU CAN COMMENT ON IT. 2402 01:20:55,000 --> 01:20:56,440 AND IN THE RESEARCH WORKFORCE, 2403 01:20:56,440 --> 01:20:59,160 THERE ARE MENTIONS ABOUT THE 2404 01:20:59,160 --> 01:21:01,560 DIVERSITY OF THE WORKFORCE IN 2405 01:21:01,560 --> 01:21:02,240 AUTISTIC RESEARCHERS AMONG OTHER 2406 01:21:02,240 --> 01:21:04,520 THINGS. 2407 01:21:04,520 --> 01:21:05,720 THE EPIDEMIOLOGICAL DATA 2408 01:21:05,720 --> 01:21:08,760 GATHERING SYSTEMS AND SURVEYS 2409 01:21:08,760 --> 01:21:12,720 THAT HELP US GAIN DATA ON 2410 01:21:12,720 --> 01:21:13,360 AUTISM. 2411 01:21:13,360 --> 01:21:15,120 AND THE LIFE COURSE OF PEOPLE ON 2412 01:21:15,120 --> 01:21:17,000 THE SPECTRUM. 2413 01:21:17,000 --> 01:21:18,320 AND OUTREACH AND DISSEMINATION 2414 01:21:18,320 --> 01:21:20,400 OF RESEARCH FINDINGS. 2415 01:21:20,400 --> 01:21:23,560 SO THESE ARE SOME OF THE BIGGER 2416 01:21:23,560 --> 01:21:27,160 SUBSECTIONS OF THIS QUESTION, 2417 01:21:27,160 --> 01:21:28,680 AND AS BEFORE, ARE THERE ANY 2418 01:21:28,680 --> 01:21:30,880 OTHER IMPORTANT TOPICS OR POINTS 2419 01:21:30,880 --> 01:21:32,680 TO CONSIDER REGARDING RESEARCH 2420 01:21:32,680 --> 01:21:35,040 INFRASTRUCTURE AND PREVALENCE 2421 01:21:35,040 --> 01:21:36,800 STUDIES, AND HAVE THERE BEEN 2422 01:21:36,800 --> 01:21:38,120 SIGNIFICANT CHANGES THAT HAVE 2423 01:21:38,120 --> 01:21:41,520 HAPPENED SINCE THE LAST TRA TEE 2424 01:21:41,520 --> 01:21:42,480 STRATEGIC PLAN THAT COULD IMPACT 2425 01:21:42,480 --> 01:21:45,440 THE DIRECTION OF THIS FIELD? 2426 01:21:45,440 --> 01:21:46,680 SO HAPPY TO TAKE SOME COMMENTS 2427 01:21:46,680 --> 01:21:56,840 ON THIS. 2428 01:22:16,880 --> 01:22:19,680 I'M NOT SEEING ANYTHING SO FAR. 2429 01:22:19,680 --> 01:22:21,760 I'LL ASK CDC IF YOU HAVE ANY -- 2430 01:22:21,760 --> 01:22:23,040 OH, SCOTT HAS A COMMENT, BUT I 2431 01:22:23,040 --> 01:22:25,240 WILL ASK CDC, TOO, IF YOU CAN 2432 01:22:25,240 --> 01:22:26,120 THINK ABOUT WHETHER YOU HAVE 2433 01:22:26,120 --> 01:22:27,840 ANYTHING TO SAY ABOUT PREVALENCE 2434 01:22:27,840 --> 01:22:28,640 STUDIES AND ANYTHING THAT WE 2435 01:22:28,640 --> 01:22:31,680 NEED TO BE INCLUDING. 2436 01:22:31,680 --> 01:22:34,760 BUT FIRST COMMENT TO SCOTT. 2437 01:22:34,760 --> 01:22:36,600 >> YES. 2438 01:22:36,600 --> 01:22:37,160 SUSAN, THANKS. 2439 01:22:37,160 --> 01:22:42,840 I THINK FOR THIS QUESTION 7, 2440 01:22:42,840 --> 01:22:44,600 THAT I KNOW SOME OF THIS IS 2441 01:22:44,600 --> 01:22:45,800 HISTORY, WHERE THINGS HAVE BEEN 2442 01:22:45,800 --> 01:22:48,520 LISTED ON HERE, BUT IF THIS IS 2443 01:22:48,520 --> 01:22:51,280 RESEARCH INFRASTRUCTURE AND DATA 2444 01:22:51,280 --> 01:22:53,360 INFRASTRUCTURE, MAYBE, I WOULD 2445 01:22:53,360 --> 01:22:54,480 PUT THINGS FOR INSTANCE LIKE THE 2446 01:22:54,480 --> 01:22:56,120 TISSUE BANKING FARTHER DOWN 2447 01:22:56,120 --> 01:22:58,400 BECAUSE THIS TENDS TO MAYBE -- 2448 01:22:58,400 --> 01:23:02,160 ORIENTED MORE TOWARDS THE 2449 01:23:02,160 --> 01:23:05,920 PHYSICAL SCIENCES, WHERE SOCIAL 2450 01:23:05,920 --> 01:23:07,120 SCIENTISTS THAT ARE IN DATA 2451 01:23:07,120 --> 01:23:07,800 SHARING THEREIN. 2452 01:23:07,800 --> 01:23:09,000 I DON'T KNOW WHETHER THERE COULD 2453 01:23:09,000 --> 01:23:11,720 BE MORE EXPANDED CONTENT ON 2454 01:23:11,720 --> 01:23:13,840 SUPPORTING BETTER COMMUNITIES OF 2455 01:23:13,840 --> 01:23:15,120 PRACTICE ON HERE FOR RESEARCHERS 2456 01:23:15,120 --> 01:23:16,880 AND RESEARCHERS' CONNECTIONS 2457 01:23:16,880 --> 01:23:18,640 WITH PRACTITIONERS AND POLICY 2458 01:23:18,640 --> 01:23:18,880 MAKERS. 2459 01:23:18,880 --> 01:23:22,760 WE REALLY HAVE A LACK OF THAT IN 2460 01:23:22,760 --> 01:23:24,640 AUTISM RESEARCH. 2461 01:23:24,640 --> 01:23:26,800 IT'S VERY SILOED AT TIMES AND 2462 01:23:26,800 --> 01:23:28,360 SEPARATED, AND I THINK WE NEED 2463 01:23:28,360 --> 01:23:29,920 THAT MORE BOTH FOR -- AMONG 2464 01:23:29,920 --> 01:23:31,640 RESEARCHERS THEMSELVES SHARING 2465 01:23:31,640 --> 01:23:35,280 STUDIES, SHARING FINDINGS, 2466 01:23:35,280 --> 01:23:36,240 SHARING APPROACHES AND 2467 01:23:36,240 --> 01:23:38,000 STRATEGIES AND CONNECTING 2468 01:23:38,000 --> 01:23:40,040 RESEARCHERS WITH PRACTITIONERS 2469 01:23:40,040 --> 01:23:41,440 OUT THERE AND SERVICE PROVIDER, 2470 01:23:41,440 --> 01:23:44,640 ET CETERA, TO CROSS CONNECT AND 2471 01:23:44,640 --> 01:23:47,400 HAVE INFORMATION SHARING SO IT 2472 01:23:47,400 --> 01:23:49,120 CAN INFORM WHAT GETS DONE IN 2473 01:23:49,120 --> 01:23:59,360 RESEARCH AND BOLST BOLSTER ENTH, 2474 01:23:59,360 --> 01:24:00,360 WE'VE BEEN CONSTANTLY TALKING 2475 01:24:00,360 --> 01:24:02,960 ABOUT GAPS IN STRATEGIC PLAN FOR 2476 01:24:02,960 --> 01:24:03,920 MANY YEARS AND SOME OF THE 2477 01:24:03,920 --> 01:24:06,520 DISCUSSION TODAY, YET I THINK WE 2478 01:24:06,520 --> 01:24:07,720 HAVE THAT CHALLENGE THAT I THINK 2479 01:24:07,720 --> 01:24:09,600 SOMETIMES RESEARCHERS AREN'T 2480 01:24:09,600 --> 01:24:10,600 PURSUING THINGS AT TIMES, BOTH 2481 01:24:10,600 --> 01:24:12,520 BECAUSE OF MAYBE THERE'S NOT A 2482 01:24:12,520 --> 01:24:14,720 LACK OF FUNDING BUT ALSO 2483 01:24:14,720 --> 01:24:15,280 SOMETIMES THESE GRANT 2484 01:24:15,280 --> 01:24:18,240 OPPORTUNITIES YOU HAVE AT NIH 2485 01:24:18,240 --> 01:24:19,520 ARE VERY OPEN, THEY OFFER A LOT 2486 01:24:19,520 --> 01:24:23,800 OF FLEXIBILITY ON STUDIES, BUT 2487 01:24:23,800 --> 01:24:25,880 SOME RESEARCHERS AWARE OF 2488 01:24:25,880 --> 01:24:27,200 ADDRESSING THE GAPS AND I THINK 2489 01:24:27,200 --> 01:24:28,200 THAT CONNECTION WITH MORE 2490 01:24:28,200 --> 01:24:29,360 COMMUNITIES OF PRACTICE WITH 2491 01:24:29,360 --> 01:24:31,480 FELLOW RESEARCHERS AND 2492 01:24:31,480 --> 01:24:32,440 PRACTITIONERS AND FRANKLY 2493 01:24:32,440 --> 01:24:33,560 AUTISTIC PEOPLE OURSELVES AND 2494 01:24:33,560 --> 01:24:36,760 FAMILY MEMBERS, I THINK WOULD BE 2495 01:24:36,760 --> 01:24:38,640 HELPFUL, I THINK, FOR ADDRESSING 2496 01:24:38,640 --> 01:24:39,120 THAT SPACE. 2497 01:24:39,120 --> 01:24:40,560 I KNOW THERE'S A MENTION ALREADY 2498 01:24:40,560 --> 01:24:42,200 OF THE COMMUNITY-BASED 2499 01:24:42,200 --> 01:24:42,800 PARTICIPATORY RESEARCH, BUT I 2500 01:24:42,800 --> 01:24:44,240 THINK IF WE COULD BOLSTER THAT 2501 01:24:44,240 --> 01:24:45,240 LANGUAGE A LITTLE BIT MORE TOO 2502 01:24:45,240 --> 01:24:47,520 IS WE NEED MORE OF THAT TO 2503 01:24:47,520 --> 01:24:50,920 CONNECT BACK OUT IN THE 2504 01:24:50,920 --> 01:24:51,280 COMMUNITY. 2505 01:24:51,280 --> 01:24:52,800 I THINK HISTORICALLY AND THIS 2506 01:24:52,800 --> 01:24:54,240 STILL CONTINUES TO BE THE CASE, 2507 01:24:54,240 --> 01:24:56,280 A LOT OF AUTISM RESEARCHES ARE 2508 01:24:56,280 --> 01:24:58,360 JUST VERY DISCONNECTED FROM 2509 01:24:58,360 --> 01:25:02,200 STAKEHOLDERS OUT THERE AND NOT 2510 01:25:02,200 --> 01:25:05,720 AS WELL INFORMED, I THINK, 2511 01:25:05,720 --> 01:25:08,200 ESPECIALLY BY AUTISTIC PEOPLE 2512 01:25:08,200 --> 01:25:09,400 OURSELVES AS FAR AS WHAT SHOULD 2513 01:25:09,400 --> 01:25:10,960 BE DRIVEN ON RESEARCH 2514 01:25:10,960 --> 01:25:15,440 PRIORITIES, YOU KNOW, OUT THERE. 2515 01:25:15,440 --> 01:25:16,840 ONE QUICK THING AND THEN I'LL 2516 01:25:16,840 --> 01:25:18,480 THROW IT BACK TO I THINK IT WAS 2517 01:25:18,480 --> 01:25:19,240 JENNIFER, I KNOW YOU HAVE OTHER 2518 01:25:19,240 --> 01:25:23,080 HANDS TO GO TO, IS THE -- I 2519 01:25:23,080 --> 01:25:25,880 THINK -- I DON'T KNOW WHETHER 2520 01:25:25,880 --> 01:25:26,680 IT'S -- THIS QUESTION COULD 2521 01:25:26,680 --> 01:25:27,880 AGAIN BE PUT IN THERE, IS THAT 2522 01:25:27,880 --> 01:25:30,640 IT'S BEEN A NEED FOR A REALLY 2523 01:25:30,640 --> 01:25:31,840 LONG TIME TO HAVE NEEDS 2524 01:25:31,840 --> 01:25:36,320 ASSESSMENTS AND PREVALENCE IN 2525 01:25:36,320 --> 01:25:38,160 TERMS OF WHAT IT LOOKS LIKE, THE 2526 01:25:38,160 --> 01:25:40,040 SPACE FOR OLDER ADOLESCENTS AND 2527 01:25:40,040 --> 01:25:40,720 ADULTS. 2528 01:25:40,720 --> 01:25:42,440 I KNOW THAT LIKE THE SEED 2529 01:25:42,440 --> 01:25:45,280 PROJECT, ET CETERA, THAT YOU 2530 01:25:45,280 --> 01:25:47,800 HAVE AT HHS IN TERMS OF CDC AND 2531 01:25:47,800 --> 01:25:49,360 OTHER AREAS HAVE BEEN STARTING 2532 01:25:49,360 --> 01:25:53,400 TO GET INTO ADOLESCENTS' LIFE 2533 01:25:53,400 --> 01:25:56,000 BUT I THINK WE NEED A LOT MORE 2534 01:25:56,000 --> 01:25:58,000 OF THAT IN ADULT LIFE. 2535 01:25:58,000 --> 01:26:00,280 THEY TEND TO BE OFTEN LIMITED 2536 01:26:00,280 --> 01:26:01,040 HISTORICALLY TO KIDS, AGAIN THIS 2537 01:26:01,040 --> 01:26:03,240 IS THE PETER PAN PHENOMENON, 2538 01:26:03,240 --> 01:26:04,520 THAT THIS QUESTION SHOULD BE 2539 01:26:04,520 --> 01:26:06,720 ADDRESSING RESEARCH 2540 01:26:06,720 --> 01:26:08,280 INFRASTRUCTURE ACROSS THE 2541 01:26:08,280 --> 01:26:10,760 LIFESPAN HONESTLY AND THE GAP 2542 01:26:10,760 --> 01:26:12,120 EXISTS MOSTLY FOR ADULTS AS FAR 2543 01:26:12,120 --> 01:26:14,520 AS GETTING DATA ON WHERE THE 2544 01:26:14,520 --> 01:26:16,240 NEEDS AND GAPS ARE, AND WE'VE 2545 01:26:16,240 --> 01:26:19,320 HAD A BETTER PROGRESS FOR THAT 2546 01:26:19,320 --> 01:26:20,400 INTERNATIONALLY, AND WE'RE 2547 01:26:20,400 --> 01:26:21,400 REALLY FAR BEHIND HERE IN THE 2548 01:26:21,400 --> 01:26:24,040 UNITED STATES AND WE SHOULD BE 2549 01:26:24,040 --> 01:26:27,520 LOOKING TO OUR COLLABORATORS AND 2550 01:26:27,520 --> 01:26:28,840 INTERNATIONALLY AND OTHER 2551 01:26:28,840 --> 01:26:29,920 COUNTRIES TO SEE WHERE THEY'VE 2552 01:26:29,920 --> 01:26:30,920 MADE PROGRESS ON THIS AND WHAT 2553 01:26:30,920 --> 01:26:32,680 WE SHOULD BE DOING HERE IN THE 2554 01:26:32,680 --> 01:26:34,840 UNITED STATES TO FRANKLY CATCH 2555 01:26:34,840 --> 01:26:36,920 UP, BECAUSE I THINK IT IS REALLY 2556 01:26:36,920 --> 01:26:39,760 HINDERING US AS FAR AS MAKING 2557 01:26:39,760 --> 01:26:41,400 PROGRESS ON THESE AREAS BY NOT 2558 01:26:41,400 --> 01:26:43,240 HAVING AS MUCH PRIORITY ON 2559 01:26:43,240 --> 01:26:45,160 RESEARCH INFRASTRUCTURE THAT HAS 2560 01:26:45,160 --> 01:26:47,840 A GREATER FOCUS ON ADULTS AND 2561 01:26:47,840 --> 01:26:48,520 OLDER ADOLESCENTS. 2562 01:26:48,520 --> 01:26:50,920 WE NEED EXTENSIVELY MORE 2563 01:26:50,920 --> 01:26:52,120 COMMITMENT THERE, AND I THINK 2564 01:26:52,120 --> 01:26:53,120 IT'S SOMETHING THAT SHOULD BE 2565 01:26:53,120 --> 01:26:55,200 ADDRESSED MORE IN LANGUAGE IN 2566 01:26:55,200 --> 01:26:57,360 THIS SECTION, WHICH IS 2567 01:26:57,360 --> 01:26:58,280 HISTORICALLY NOT BEEN PRIORITY 2568 01:26:58,280 --> 01:27:01,280 TO THE SECTION BECAUSE OF THE 2569 01:27:01,280 --> 01:27:03,280 ADULT FOCUS IN Q6, EVEN THOUGH 2570 01:27:03,280 --> 01:27:04,880 THIS RESEARCH INFRASTRUCTURE 2571 01:27:04,880 --> 01:27:06,920 SHOULD APPLY TO RESEARCH ON 2572 01:27:06,920 --> 01:27:08,880 AUTISM ACROSS THE LIFE COURSE, 2573 01:27:08,880 --> 01:27:10,400 WITH PRIORITIES UNDER THE AUTISM 2574 01:27:10,400 --> 01:27:11,320 CARES ACT AND QUALITY OF LIFE 2575 01:27:11,320 --> 01:27:12,920 ACROSS THE LIFESPAN. 2576 01:27:12,920 --> 01:27:14,520 >> THANK YOU, SCOTT. 2577 01:27:14,520 --> 01:27:19,560 AND THOSE ARE GOOD COMMENTS. 2578 01:27:19,560 --> 01:27:21,240 WITH THE HISTORY OF THIS SECTION 2579 01:27:21,240 --> 01:27:24,040 TO WHEN WE STARTED OUT WITH THIS 2580 01:27:24,040 --> 01:27:26,160 PLAN IN 2009, SOME OF THE TISSUE 2581 01:27:26,160 --> 01:27:27,800 BANKING AND SO FORTH WAS NEW AND 2582 01:27:27,800 --> 01:27:30,840 SO THERE WAS A LOT OF INTEREST 2583 01:27:30,840 --> 01:27:31,920 IN GETTING THAT UP AND RUNNING 2584 01:27:31,920 --> 01:27:35,920 BUT NOW IT IS UP AND RUNNING, SO 2585 01:27:35,920 --> 01:27:38,400 IT SEEMS LIKE THERE IS MORE 2586 01:27:38,400 --> 01:27:39,480 EMPHASIS ON THE CONNECTIONS 2587 01:27:39,480 --> 01:27:40,680 BETWEEN RESEARCHERS AND HOW WE 2588 01:27:40,680 --> 01:27:44,200 CAN REALLY SUPPORT THE RESEARCH 2589 01:27:44,200 --> 01:27:45,280 COMMUNITY HOLISTICALLY. 2590 01:27:45,280 --> 01:27:48,440 SO APPRECIATE THAT. 2591 01:27:48,440 --> 01:27:49,880 NEXT WE'LL TAKE A COMMENT FROM 2592 01:27:49,880 --> 01:28:00,200 JENNIFER JOHNSON. 2593 01:28:03,080 --> 01:28:05,720 >> ARE YOU ABLE -- 2594 01:28:05,720 --> 01:28:06,160 >> JUST HEARD YOU. 2595 01:28:06,160 --> 01:28:07,360 >> CAN YOU HEAR ME? 2596 01:28:07,360 --> 01:28:09,680 OKAY. 2597 01:28:09,680 --> 01:28:10,880 I'M HAVING A HARD TIME FIGURING 2598 01:28:10,880 --> 01:28:12,840 OUT THIS AUDIO HERE. 2599 01:28:12,840 --> 01:28:13,960 SO JUST A COUPLE THINGS. 2600 01:28:13,960 --> 01:28:16,240 I THINK THAT HAVE DEVELOPED 2601 01:28:16,240 --> 01:28:18,120 SINCE WE LAST UPDATED THE 2602 01:28:18,120 --> 01:28:20,720 STRATEGIC PLAN. 2603 01:28:20,720 --> 01:28:22,680 UNDER THE PATIENT-CENTERED 2604 01:28:22,680 --> 01:28:24,760 OUTCOMES RESEARCH AUTHORIZATION, 2605 01:28:24,760 --> 01:28:30,360 THE LAST THREE AUTHORIZATIONS 2606 01:28:30,360 --> 01:28:35,840 IDENTIFIED THE -- FOR RESEARCH 2607 01:28:35,840 --> 01:28:36,920 AUTHORIZED UNDER THAT ACT. 2608 01:28:36,920 --> 01:28:38,240 ALTHOUGH OBVIOUSLY IT DOESN'T 2609 01:28:38,240 --> 01:28:40,840 POINT OUT OR CALL OUT 2610 01:28:40,840 --> 01:28:44,480 SPECIFICALLY AUTISM, GIVEN THAT 2611 01:28:44,480 --> 01:28:45,880 IDDD IS THE POPULATION THAT'S 2612 01:28:45,880 --> 01:28:47,720 IDENTIFIED IN MANY PEOPLE WHO 2613 01:28:47,720 --> 01:28:49,920 ARE YO AUTISTIC FALL WITHIN THAT 2614 01:28:49,920 --> 01:28:52,520 CATEGORY, THAT MIGHT BE 2615 01:28:52,520 --> 01:28:53,400 SOMETHING TO REFERENCE OR 2616 01:28:53,400 --> 01:28:56,720 HIGHLIGHT AS A POTENTIAL 2617 01:28:56,720 --> 01:28:59,120 RESOURCE FOR BUILDING MORE 2618 01:28:59,120 --> 01:28:59,880 INFRASTRUCTURE AND GENERATING 2619 01:28:59,880 --> 01:29:01,720 SOME RESEARCH ON INDIVIDUALS 2620 01:29:01,720 --> 01:29:06,560 WITH AUTISM. 2621 01:29:06,560 --> 01:29:07,640 THE OTHER THING I WAS GOING TO 2622 01:29:07,640 --> 01:29:09,600 MENTION HERE IS AS IT RELATES TO 2623 01:29:09,600 --> 01:29:11,440 COVID, AND I'M ACTUALLY KIND OF 2624 01:29:11,440 --> 01:29:13,240 SURPRISED THAT COVID HASN'T COME 2625 01:29:13,240 --> 01:29:14,640 UP MORE FREQUENTLY IN OUR 2626 01:29:14,640 --> 01:29:16,720 CONVERSATION TODAY, BUT WE 2627 01:29:16,720 --> 01:29:17,920 CERTAINLY KNOW FROM COVID THAT 2628 01:29:17,920 --> 01:29:20,440 WE DIDN'T HAVE GOOD DATA ON 2629 01:29:20,440 --> 01:29:24,280 PEOPLE WITH DISABILITIES IN 2630 01:29:24,280 --> 01:29:25,560 GENERAL, BUT AUTISTIC 2631 01:29:25,560 --> 01:29:26,320 INDIVIDUALS, AND OBVIOUSLY 2632 01:29:26,320 --> 01:29:27,480 THERE'S A LOT OF RESEARCH THAT 2633 01:29:27,480 --> 01:29:28,960 NEEDS TO BE DONE TO UNDERSTAND 2634 01:29:28,960 --> 01:29:32,800 THE IMPACT OF COVID ON AUTISTIC 2635 01:29:32,800 --> 01:29:34,760 INDIVIDUALS AND MANY DIFFERENT 2636 01:29:34,760 --> 01:29:35,400 WAYS. 2637 01:29:35,400 --> 01:29:37,960 ON THEIR HEALTH, THEIR MENTAL 2638 01:29:37,960 --> 01:29:39,240 HEALTH, DOES IT IMPACT THEM 2639 01:29:39,240 --> 01:29:40,880 DIFFERENTLY, BOTH PHYSICALLY AND 2640 01:29:40,880 --> 01:29:45,480 JUST IN TERMS OF -- WE KNOW IN 2641 01:29:45,480 --> 01:29:46,800 TERMS OF COMMUNITY LIVING AND 2642 01:29:46,800 --> 01:29:50,080 JUST LIFE IN GENERAL, BUT WE 2643 01:29:50,080 --> 01:29:51,920 NEED TO KIND OF BE LOOKING AT, 2644 01:29:51,920 --> 01:29:53,880 AGAIN, THE IMPACT OF COVID AND 2645 01:29:53,880 --> 01:29:55,240 WHAT RESEARCH WE'RE SUPPORTING 2646 01:29:55,240 --> 01:29:59,360 THERE, BUT ALSO WE SAW IN THE 2647 01:29:59,360 --> 01:30:00,920 PANDEMIC THAT WE DIDN'T HAVE THE 2648 01:30:00,920 --> 01:30:02,880 DATA TO KNOW WHAT WAS HAPPENING 2649 01:30:02,880 --> 01:30:04,960 TO PEOPLE WITH DISABILITIES, 2650 01:30:04,960 --> 01:30:07,960 INCLUDING AUTISTIC INDIVIDUALS. 2651 01:30:07,960 --> 01:30:10,680 SO JUST REINFORCING THE NEED FOR 2652 01:30:10,680 --> 01:30:13,400 MORE OF THAT ADMINISTRATIVE TYPE 2653 01:30:13,400 --> 01:30:16,880 OF DATA, BEING ABLE TO IDENTIFY 2654 01:30:16,880 --> 01:30:19,080 PEOPLE WITH AUTISM IN DATASETS 2655 01:30:19,080 --> 01:30:21,960 AND BEING ABLE TO USE THAT TO 2656 01:30:21,960 --> 01:30:22,800 BETTER UNDERSTAND THEIR 2657 01:30:22,800 --> 01:30:25,800 OUTCOMES. 2658 01:30:25,800 --> 01:30:27,280 >> THANK YOU, JENNIFER, FOR 2659 01:30:27,280 --> 01:30:27,720 THOSE COMMENTS. 2660 01:30:27,720 --> 01:30:29,440 AND WE DO HAVE A SECTION ON 2661 01:30:29,440 --> 01:30:32,320 COVID THAT WE'RE GOING TO BE 2662 01:30:32,320 --> 01:30:34,200 TALKING ABOUT SOON, SO WE CAN 2663 01:30:34,200 --> 01:30:37,240 REVISIT THAT WHEN WE GET THERE. 2664 01:30:37,240 --> 01:30:38,480 BUT APPRECIATE ALL OF THAT. 2665 01:30:38,480 --> 01:30:41,400 SO THANK YOU. 2666 01:30:41,400 --> 01:30:43,480 NEXT WE'LL TAKE A COMMENT FROM 2667 01:30:43,480 --> 01:30:43,760 JOE PIVEN. 2668 01:30:43,760 --> 01:30:48,960 >> THANK YOU, SUSAN. 2669 01:30:48,960 --> 01:30:50,920 I SEE THE BULLET FOR RESEARCH 2670 01:30:50,920 --> 01:30:52,240 WORKFORCE HIGHLIGHTS DIVERSITY 2671 01:30:52,240 --> 01:30:54,000 AND AUTISTIC RESEARCHERS. 2672 01:30:54,000 --> 01:30:58,680 AND I DON'T KNOW IF -- I DON'T 2673 01:30:58,680 --> 01:31:02,960 WANT TO DETRACT FROM THAT, BUT I 2674 01:31:02,960 --> 01:31:05,520 THINK WE NEED MORE EMPHASIS ON 2675 01:31:05,520 --> 01:31:07,640 DEVELOPING THE RESEARCH 2676 01:31:07,640 --> 01:31:07,920 WORKFORCE. 2677 01:31:07,920 --> 01:31:12,360 AND I SAY THAT IN PART 2678 01:31:12,360 --> 01:31:15,200 ANECDOTALLY BASED ON MY POSITION 2679 01:31:15,200 --> 01:31:16,960 AS DIRECTING A POSTDOCTORAL 2680 01:31:16,960 --> 01:31:20,680 RESEARCH TRAINING -- AN NIH 2681 01:31:20,680 --> 01:31:22,960 T32 OVER THE LAST 20 YEARS. 2682 01:31:22,960 --> 01:31:28,440 AND WE'VE ALWAYS HAD A LOT OF 2683 01:31:28,440 --> 01:31:29,800 APPLICANTS AND THE FIELD HAS 2684 01:31:29,800 --> 01:31:33,600 BEEN KIND OF BURGEONING. 2685 01:31:33,600 --> 01:31:35,240 OVER THE LAST CYCLE, I THINK WE 2686 01:31:35,240 --> 01:31:36,280 AND OTHER PEOPLE AROUND THE 2687 01:31:36,280 --> 01:31:39,720 COUNTRY HAVE JUST EXPERIENCED A 2688 01:31:39,720 --> 01:31:40,560 DRAMATIC INCREASE IN APPLICANTS. 2689 01:31:40,560 --> 01:31:41,760 THERE ARE A LOT OF PEOPLE GO 2690 01:31:41,760 --> 01:31:43,640 INTO INDUSTRY AND OUT INTO THE 2691 01:31:43,640 --> 01:31:44,960 CLINICAL WORLD AND NOT GOING 2692 01:31:44,960 --> 01:31:47,680 INTO RESEARCH FOR A VARIETY OF 2693 01:31:47,680 --> 01:31:48,000 REASONS. 2694 01:31:48,000 --> 01:31:50,640 AND I THINK THIS IS A PLACE 2695 01:31:50,640 --> 01:31:58,440 WHERE WE SHOULDN'T -- BE 2696 01:31:58,440 --> 01:31:59,480 EMPHASIZING NOVEL APPROACHES TO 2697 01:31:59,480 --> 01:32:01,040 TRAINING AND JUST BOLSTERING 2698 01:32:01,040 --> 01:32:01,680 TRAINING IN GENERAL. 2699 01:32:01,680 --> 01:32:05,400 I THINK THE OTHER PIECE OF THIS 2700 01:32:05,400 --> 01:32:10,120 IS THAT WE TALK A LOT ABOUT 2701 01:32:10,120 --> 01:32:10,680 TRANSLATIONAL AND 2702 01:32:10,680 --> 01:32:14,040 INTERDISCIPLINARY RESEARCH, BUT 2703 01:32:14,040 --> 01:32:16,360 IN POINT OF FACT, DOING THAT, 2704 01:32:16,360 --> 01:32:18,320 PULLING THAT OFF, GETTING 2705 01:32:18,320 --> 01:32:19,360 FUNDED, GETTING TRAINING IN THAT 2706 01:32:19,360 --> 01:32:20,720 AREA IS REALLY DIFFICULT, REALLY 2707 01:32:20,720 --> 01:32:23,040 A CHALLENGE. 2708 01:32:23,040 --> 01:32:24,320 AND I THINK WE NEED TO THINK 2709 01:32:24,320 --> 01:32:27,040 ABOUT NOVEL WAYS TO TRAIN OUR 2710 01:32:27,040 --> 01:32:33,280 YOUNG RESEARCHERS THAT CROSS 2711 01:32:33,280 --> 01:32:34,480 DISCIPLINARY BOUNDARIES, THAT 2712 01:32:34,480 --> 01:32:36,360 CROSS INSTITUTIONS, AND REALLY 2713 01:32:36,360 --> 01:32:38,760 JUST KIND OF WORK MORE CREATIVE 2714 01:32:38,760 --> 01:32:41,600 WAYS TO DO THIS. 2715 01:32:41,600 --> 01:32:44,000 SO THAT'S JUST MY PLAN FOR 2716 01:32:44,000 --> 01:32:46,520 EXPANDING THAT RESEARCH 2717 01:32:46,520 --> 01:32:46,800 WORKFORCE. 2718 01:32:46,800 --> 01:32:48,280 >> THANK YOU. 2719 01:32:48,280 --> 01:32:50,160 SO THE CHAPTER WAS REDUCED TO A 2720 01:32:50,160 --> 01:32:51,360 SLIDE, SO IT'S CERTAINLY NOT 2721 01:32:51,360 --> 01:32:53,760 EVERYTHING, BUT DIVERSITY IN 2722 01:32:53,760 --> 01:32:54,840 AUTISTIC RESEARCHERS ARE IN YOU 2723 01:32:54,840 --> 01:32:55,840 THINGS THAT CAME UP WITH 2724 01:32:55,840 --> 01:32:57,200 RESEARCH WORKFORCE. 2725 01:32:57,200 --> 01:32:59,200 OF COURSE EXPANDING THE RESEARCH 2726 01:32:59,200 --> 01:33:00,320 WORKFORCE AND SUPPORTING IT HAS 2727 01:33:00,320 --> 01:33:01,600 ALWAYS BEEN A PART OF THE 2728 01:33:01,600 --> 01:33:04,240 STRATEGIC PLAN. 2729 01:33:04,240 --> 01:33:06,320 BUT PLEES APPRECIATE THAT. 2730 01:33:06,320 --> 01:33:07,840 AND IF YOU HAVE ANY SUGGESTIONS 2731 01:33:07,840 --> 01:33:10,280 ON WHAT KINDS OF THINGS WOULD BE 2732 01:33:10,280 --> 01:33:11,360 CREATIVE NEW WAYS TO INSPIRE 2733 01:33:11,360 --> 01:33:13,320 PEOPLE TO JOIN THE FIELD OR STAY 2734 01:33:13,320 --> 01:33:14,760 IN THE FIELD, THINGS THAT COULD 2735 01:33:14,760 --> 01:33:17,360 REALLY HELP PEOPLE, PLEASE EMAIL 2736 01:33:17,360 --> 01:33:18,800 US IF YOU HAVE THOUGHTS ABOUT 2737 01:33:18,800 --> 01:33:22,960 THINGS THAT COULD BE MENTIONED. 2738 01:33:22,960 --> 01:33:24,600 AND NEXT WE'LL GO TO MATTHEW 2739 01:33:24,600 --> 01:33:26,360 SIEGEL, ALTHOUGH YOUR NAME ON 2740 01:33:26,360 --> 01:33:28,960 SCREEN IS KAREN VINCENT. 2741 01:33:28,960 --> 01:33:30,960 >> THANK YOU, SUSAN. 2742 01:33:30,960 --> 01:33:37,040 I AM STILL MATTHEW SIEGEL. 2743 01:33:37,040 --> 01:33:38,600 SO I WOULD LIKE TO SUGGEST WE 2744 01:33:38,600 --> 01:33:39,800 COULD ADD A BULLET UNDER THIS 2745 01:33:39,800 --> 01:33:41,560 BECAUSE IT IS PART OF RESEARCH 2746 01:33:41,560 --> 01:33:43,080 INFRASTRUCTURE, I BELIEVE, WHICH 2747 01:33:43,080 --> 01:33:46,680 IS RESEARCH ACCESS. 2748 01:33:46,680 --> 01:33:47,560 AND WHAT I'M THINKING ABOUT 2749 01:33:47,560 --> 01:33:52,480 THERE IS TWO PIECES. 2750 01:33:52,480 --> 01:33:59,360 ONE IS ACCESSIBILITY FOR THE 2751 01:33:59,360 --> 01:34:02,200 GENERAL AUTISM POPULATION, 2752 01:34:02,200 --> 01:34:03,200 MAKING RESEARCH OPPORTUNITIES 2753 01:34:03,200 --> 01:34:06,480 KNOWN TO PEOPLE SUCH AS 2754 01:34:06,480 --> 01:34:13,160 INNOVATIVE THINGS LIKE THE IAN 2755 01:34:13,160 --> 01:34:14,920 PLATFORM AND SOME OF THE WORK 2756 01:34:14,920 --> 01:34:18,120 SAFARI HAS DONE IN CREATING 2757 01:34:18,120 --> 01:34:20,920 ACCESS TO RESEARCH STUDIES, AND 2758 01:34:20,920 --> 01:34:24,000 JUST AS IMPORTANTLY, A SECOND 2759 01:34:24,000 --> 01:34:29,960 PART IS FACILITATING ACCESS TO 2760 01:34:29,960 --> 01:34:31,200 RESEARCH FOR PEOPLE WHO HAVE 2761 01:34:31,200 --> 01:34:32,200 HIGH SUPPORT NEEDS, WHETHER THAT 2762 01:34:32,200 --> 01:34:33,600 IS PEOPLE WHO HAVE 2763 01:34:33,600 --> 01:34:34,280 INTELLECTUAL -- PEOPLE WITH 2764 01:34:34,280 --> 01:34:36,800 AUTISM WHO HAVE INTELLECTUAL 2765 01:34:36,800 --> 01:34:41,040 DISABILITY, HIGH SENSORY ISSUES, 2766 01:34:41,040 --> 01:34:42,960 INTERFERING OR SEVERE BEHAVIOR 2767 01:34:42,960 --> 01:34:45,760 SUCH AS SELF-INJURY OR 2768 01:34:45,760 --> 01:34:49,040 AGGRESSION, WHO STILL NEED AND 2769 01:34:49,040 --> 01:34:51,320 DESERVE STUDY AND RESEARCH AND 2770 01:34:51,320 --> 01:34:55,160 YET THE VERY THINGS THAT THEY 2771 01:34:55,160 --> 01:34:57,920 NEED RESEARCHED CAN PREVENT THEM 2772 01:34:57,920 --> 01:35:01,960 FROM ACCESSING RESEARCH STUDIES, 2773 01:35:01,960 --> 01:35:04,480 AND OF COURSE A KEY REFERENCE ON 2774 01:35:04,480 --> 01:35:05,880 THIS IS ALYCIA HALLADAY AND 2775 01:35:05,880 --> 01:35:07,320 OTHERS PUBLISHED AN ARTICLE, I 2776 01:35:07,320 --> 01:35:10,160 BELIEVE LAST YEAR, ON WAYS TO 2777 01:35:10,160 --> 01:35:12,120 INCREASE ACCESS TO RESEARCH FOR 2778 01:35:12,120 --> 01:35:15,600 INDIVIDUALS WITH AUTISM WHO HAVE 2779 01:35:15,600 --> 01:35:16,960 HIGH SUPPORT NEEDS OR FIT INTO 2780 01:35:16,960 --> 01:35:18,240 THESE OTHER AREAS OF THE 2781 01:35:18,240 --> 01:35:19,640 SPECTRUM THAT I'VE MENTIONED. 2782 01:35:19,640 --> 01:35:23,480 SO THANK YOU. 2783 01:35:23,480 --> 01:35:25,560 >> THANK YOU, MATTHEW, AND THOSE 2784 01:35:25,560 --> 01:35:27,880 THINGS DO FIT IN, SO WHAT YOU'RE 2785 01:35:27,880 --> 01:35:29,400 CALLING ACCESS IS WHAT WE'VE 2786 01:35:29,400 --> 01:35:34,520 INCLUDED UNDER DISSEMINATION, 2787 01:35:34,520 --> 01:35:35,880 BUT WE COULD USE OTHER 2788 01:35:35,880 --> 01:35:36,520 TERMINOLOGY THERE AS WELL. 2789 01:35:36,520 --> 01:35:37,960 IN TERMS OF INCLUSION OF PEOPLE 2790 01:35:37,960 --> 01:35:40,000 WITH HIGH SUPPORT NEEDS IN 2791 01:35:40,000 --> 01:35:41,440 RESEARCH, I THINK THAT WE HAVE 2792 01:35:41,440 --> 01:35:43,760 THAT IN THE UPCOMING EQUITY AND 2793 01:35:43,760 --> 01:35:47,640 DISPARITIES SECTION, BUT WE CAN 2794 01:35:47,640 --> 01:35:49,480 ALWAYS PUT IT IN MORE THAN ONE 2795 01:35:49,480 --> 01:35:51,280 PLACE AS WELL AS WE'VE 2796 01:35:51,280 --> 01:35:52,400 RECOGNIZED THAT'S COME UP A FEW 2797 01:35:52,400 --> 01:35:53,400 TIMES IN OUR CONVERSATION. 2798 01:35:53,400 --> 01:35:56,640 SO THANK YOU. 2799 01:35:56,640 --> 01:35:56,920 PAUL WANG? 2800 01:35:56,920 --> 01:35:57,960 >> THANK YOU, SUSAN. 2801 01:35:57,960 --> 01:35:59,840 I WANTED TO SPEAK TO THE SECOND 2802 01:35:59,840 --> 01:36:01,480 BULLET, DATA INFRASTRUCTURE 2803 01:36:01,480 --> 01:36:02,680 POINT. 2804 01:36:02,680 --> 01:36:04,720 IT'S FANTASTIC, I THINK, THAT 2805 01:36:04,720 --> 01:36:08,880 NIH HAS CREATED AND MAINTAINS 2806 01:36:08,880 --> 01:36:09,960 ENDAR, THE DATABASE WHERE I 2807 01:36:09,960 --> 01:36:11,400 THINK ALL FEDERALLY FUNDED 2808 01:36:11,400 --> 01:36:15,560 RESEARCHERS ARE MANDATED TO 2809 01:36:15,560 --> 01:36:17,000 DEPOSIT THEIR RESEARCH DATA 2810 01:36:17,000 --> 01:36:20,400 FINDINGS SO THAT THEY CAN BE 2811 01:36:20,400 --> 01:36:22,200 USED AS SECONDARY SOURCES FOR 2812 01:36:22,200 --> 01:36:23,560 FUTURE RESEARCHERS WHO MIGHT 2813 01:36:23,560 --> 01:36:24,640 WANT TO ACCESS THAT. 2814 01:36:24,640 --> 01:36:26,920 HERE, THOUGH, I WANT TO CONVEY 2815 01:36:26,920 --> 01:36:27,600 SECONDHAND COMMENTS BECAUSE I 2816 01:36:27,600 --> 01:36:29,560 DON'T HAVE FIRSTHAND EXPERIENCE 2817 01:36:29,560 --> 01:36:32,520 IN PULLING DATA FROM ENDAR. 2818 01:36:32,520 --> 01:36:36,120 I'VE HEARD FROM MANY, MANY 2819 01:36:36,120 --> 01:36:37,120 RESEARCHERS THAT IT IS VERY 2820 01:36:37,120 --> 01:36:38,320 DIFFICULT, TOO DIFFICULT, TO GET 2821 01:36:38,320 --> 01:36:40,920 DATA OUT OF ENDAR. 2822 01:36:40,920 --> 01:36:41,920 OTHERS WHO ARE ON THIS CALL MAY 2823 01:36:41,920 --> 01:36:44,120 BE ABLE TO SPEAK TO THIS FROM 2824 01:36:44,120 --> 01:36:44,680 FIRSTHAND EXPERIENCE, BUT I 2825 01:36:44,680 --> 01:36:45,960 THINK IT'S IMPERATIVE THAT WE 2826 01:36:45,960 --> 01:36:47,600 MAKE THIS RESOURCE AS EASILY 2827 01:36:47,600 --> 01:36:51,200 ACCESSIBLE AS POSSIBLE SO THAT 2828 01:36:51,200 --> 01:36:52,960 ITS FULL VALUE CAN BE REALIZED. 2829 01:36:52,960 --> 01:36:54,720 AGAIN, IT'S FANTASTIC THAT IT 2830 01:36:54,720 --> 01:36:56,240 EXISTS, THAT RESEARCHERS ARE 2831 01:36:56,240 --> 01:36:57,320 REQUIRED TO PUT THEIR DATA IN 2832 01:36:57,320 --> 01:36:57,680 THERE. 2833 01:36:57,680 --> 01:36:58,640 LET'S MAKE SURE THAT THE DATA 2834 01:36:58,640 --> 01:37:07,920 CAN BE USED BY OTHER RESEARCHERS 2835 01:37:07,920 --> 01:37:08,840 RATHER THAN COMING IN AND NEVER 2836 01:37:08,840 --> 01:37:09,280 GOING OUT. 2837 01:37:09,280 --> 01:37:10,720 >> THANK YOU AND WE'LL BE SURE 2838 01:37:10,720 --> 01:37:13,640 TO PASS THAT ON TO STAFF AT NIMH 2839 01:37:13,640 --> 01:37:14,920 INVOLVED IN THAT SYSTEM TO ASK 2840 01:37:14,920 --> 01:37:16,160 THEM ABOUT ACCESSIBILITY. 2841 01:37:16,160 --> 01:37:17,920 DO YOU HAVE ANY COMMENTS, PAUL, 2842 01:37:17,920 --> 01:37:20,840 IN TERMS OF WHAT ARE THE NEWER 2843 01:37:20,840 --> 01:37:22,080 FRONTIERS THAT WE NEED TO BE 2844 01:37:22,080 --> 01:37:24,880 ADDRESSING IN TERMS OF SOME OF 2845 01:37:24,880 --> 01:37:26,560 THIS TYPE OF INFRASTRUCTURE FOR 2846 01:37:26,560 --> 01:37:27,200 RESEARCHERS? 2847 01:37:27,200 --> 01:37:29,200 AS I KNOW SIMONS HAS BEEN 2848 01:37:29,200 --> 01:37:30,400 INVOLVED A LOT IN CREATING 2849 01:37:30,400 --> 01:37:30,960 INFRASTRUCTURE AS WELL. 2850 01:37:30,960 --> 01:37:32,680 >> YEAH, SOME OF THE OTHER 2851 01:37:32,680 --> 01:37:34,000 SPEAKERS HAVE ALREADY TOUCHED ON 2852 01:37:34,000 --> 01:37:35,040 THAT ISSUE. 2853 01:37:35,040 --> 01:37:36,920 THE LAST COMMENT FROM DR. SIEGEL 2854 01:37:36,920 --> 01:37:40,000 ABOUT MAKING SURE THAT THE 2855 01:37:40,000 --> 01:37:41,280 INDIVIDUALS WITH AUTISM WHO HAVE 2856 01:37:41,280 --> 01:37:42,200 HIGH SUPPORT NEEDS CAN 2857 01:37:42,200 --> 01:37:44,520 PARTICIPATE IN RESEARCH, THAT 2858 01:37:44,520 --> 01:37:45,680 RESEARCHERS CAN FIND THEM AND 2859 01:37:45,680 --> 01:37:47,960 RECRUIT THEM WITHOUT EXCESSIVE 2860 01:37:47,960 --> 01:37:48,400 BARRIERS. 2861 01:37:48,400 --> 01:37:49,960 IT'S IMPORTANT TO INCLUDE THAT 2862 01:37:49,960 --> 01:37:50,960 POPULATION IN RESEARCH. 2863 01:37:50,960 --> 01:37:52,360 THERE ARE, OF COURSE, MORE AND 2864 01:37:52,360 --> 01:37:53,560 MORE DIFFERENT TYPES OF DATA 2865 01:37:53,560 --> 01:37:55,400 THAT ARE BEING GENERATED 2866 01:37:55,400 --> 01:37:58,800 SOMETIMES IN ENORMOUS VOLUME. 2867 01:37:58,800 --> 01:38:00,000 OBVIOUSLY THERE'S WHAT WE THINK 2868 01:38:00,000 --> 01:38:01,560 OF AS COGNITIVE BEHAVIORAL OR 2869 01:38:01,560 --> 01:38:08,560 OTHER KINDS OF PHENOTYPIC -- 2870 01:38:08,560 --> 01:38:10,400 DATA. 2871 01:38:10,400 --> 01:38:14,240 THERE'S VOLUMINOUS DATA, SO 2872 01:38:14,240 --> 01:38:15,520 THERE ARE MANY DIFFERENT DATA 2873 01:38:15,520 --> 01:38:17,200 TYPES AND I THINK THERE'S GOING 2874 01:38:17,200 --> 01:38:20,120 TO BE GREAT POTENTIAL IN LOOKING 2875 01:38:20,120 --> 01:38:22,200 ACROSS THESE DATA TYPES. 2876 01:38:22,200 --> 01:38:25,520 SO WE JUST HAVE TO MAKE SURE 2877 01:38:25,520 --> 01:38:28,440 THAT THE ABILITY TO DO THAT IS 2878 01:38:28,440 --> 01:38:31,320 THERE. 2879 01:38:31,320 --> 01:38:31,960 >> THANK YOU. 2880 01:38:31,960 --> 01:38:35,120 DO YOU SEE ANY FURTHER NEEDS FOR 2881 01:38:35,120 --> 01:38:37,960 LINKING ANY OF THESE DATASETS OR 2882 01:38:37,960 --> 01:38:39,040 ANYTHING ELSE THAT WE WOULD WANT 2883 01:38:39,040 --> 01:38:42,120 TO MENTION IN THE PLAN? 2884 01:38:42,120 --> 01:38:43,520 WE HAVE SEVERAL THINGS IN PLACE 2885 01:38:43,520 --> 01:38:43,680 NOW. 2886 01:38:43,680 --> 01:38:46,160 >> YEAH, I'M SORRY THAT I DON'T 2887 01:38:46,160 --> 01:38:48,120 HAVE THE EXPERTISE TO COMMENT 2888 01:38:48,120 --> 01:38:49,680 REALLY SPECIFICALLY ON THAT, BUT 2889 01:38:49,680 --> 01:38:51,880 FOR SURE, WE WANT TO BE ABLE TO 2890 01:38:51,880 --> 01:38:53,720 LINK ACROSS THOSE DIFFERENT DATA 2891 01:38:53,720 --> 01:38:54,480 TYPES. 2892 01:38:54,480 --> 01:38:55,480 WHILE OF COURSE RESPECTING 2893 01:38:55,480 --> 01:38:57,360 SUBJECT PRIVACY 2894 01:38:57,360 --> 01:38:58,760 CONFIDENTIALALITY ISSUES, THAT'S 2895 01:38:58,760 --> 01:38:59,840 PARAMOUNT, BUT WHEN SUBJECTS 2896 01:38:59,840 --> 01:39:01,160 CONSENT OR WHEN IT'S POSSIBLE TO 2897 01:39:01,160 --> 01:39:02,800 DO THAT KIND OF LINKAGE WHILE 2898 01:39:02,800 --> 01:39:04,640 PRESERVING PRIVACY IS AN 2899 01:39:04,640 --> 01:39:05,320 ABSOLUTE MUST. 2900 01:39:05,320 --> 01:39:05,640 >> GREAT. 2901 01:39:05,640 --> 01:39:06,400 THANK YOU. 2902 01:39:06,400 --> 01:39:10,400 AND WE WILL CONSULT WITH SOME OF 2903 01:39:10,400 --> 01:39:11,640 THE EXPERTS WE KNOW IN THAT AREA 2904 01:39:11,640 --> 01:39:13,000 TOO TO MAKE SURE THAT WE INCLUDE 2905 01:39:13,000 --> 01:39:14,280 WHATEVER IS THE LATEST THERE. 2906 01:39:14,280 --> 01:39:18,320 SO THANK YOU. 2907 01:39:18,320 --> 01:39:20,480 NEXT WE'LL GO TO DENA GASSNER. 2908 01:39:20,480 --> 01:39:22,720 >> THANKS, SUSAN. 2909 01:39:22,720 --> 01:39:24,120 I'M GRATEFUL THAT DR. PIVEN 2910 01:39:24,120 --> 01:39:25,440 BROUGHT UP, YOU KNOW, INCREASING 2911 01:39:25,440 --> 01:39:28,720 THE RESEARCH COMMUNITY. 2912 01:39:28,720 --> 01:39:31,480 I WANTED TO MENTION AS A SUBSET 2913 01:39:31,480 --> 01:39:35,280 TO THAT, THE LACK OF WORKPLACE 2914 01:39:35,280 --> 01:39:36,720 ACCOMMODATIONS FOR AUTISTIC 2915 01:39:36,720 --> 01:39:39,000 RESEARCHERS AND OTHER DISABLED 2916 01:39:39,000 --> 01:39:40,000 RESEARCHERS. 2917 01:39:40,000 --> 01:39:41,760 ESPECIALLY AROUND THE 2918 01:39:41,760 --> 01:39:43,400 GATE-KEEPING IN TERMS OF LIKE 2919 01:39:43,400 --> 01:39:47,320 ENTRANCE EXAMS OR INTERVIEWS, 2920 01:39:47,320 --> 01:39:48,760 THINGS THAT ARE NOT GOING TO 2921 01:39:48,760 --> 01:39:49,840 DEMONSTRATE OUR RELATIVE 2922 01:39:49,840 --> 01:39:51,680 STRENGTHS, AND ALSO THE 2923 01:39:51,680 --> 01:39:53,440 INORDINATELY HIGH NUMBER OF 2924 01:39:53,440 --> 01:39:55,200 HOURS A COMPETITIVE RESEARCHER 2925 01:39:55,200 --> 01:39:59,240 IS EXPECTED TO PUT IN. 2926 01:39:59,240 --> 01:40:00,760 ALSO THERE'S A LOT OF PRIVILEGE 2927 01:40:00,760 --> 01:40:03,360 INVOLVED WITH WHO GETS 2928 01:40:03,360 --> 01:40:05,360 INTERNSHIPS IN POSTDOC SETTINGS 2929 01:40:05,360 --> 01:40:07,600 AND LOW WAGES IN REGARD TO THAT. 2930 01:40:07,600 --> 01:40:09,360 SO I DID WANT TO BRING THAT UP, 2931 01:40:09,360 --> 01:40:12,720 AND I ALSO WANTED TO MENTION 2932 01:40:12,720 --> 01:40:14,600 HERE, AGAIN, UNDER 2933 01:40:14,600 --> 01:40:17,040 EPIDEMIOLOGICAL GATHERING, THE 2934 01:40:17,040 --> 01:40:18,000 504 DATA THAT'S BEING MISSED. 2935 01:40:18,000 --> 01:40:19,400 AND LASTLY, I WANTED TO TALK 2936 01:40:19,400 --> 01:40:21,600 ABOUT THE INACCESSIBILITY OF 2937 01:40:21,600 --> 01:40:22,480 RESEARCH DATA WITH SOCIAL 2938 01:40:22,480 --> 01:40:26,200 SECURITY. 2939 01:40:26,200 --> 01:40:27,520 MY DISSERTATION IS ON A SOCIAL 2940 01:40:27,520 --> 01:40:28,280 SECURITY TOPIC. 2941 01:40:28,280 --> 01:40:32,720 I SUBMITTED A REQUEST FOR 2942 01:40:32,720 --> 01:40:33,320 SPECIFIC INFORMATION. 2943 01:40:33,320 --> 01:40:35,280 IT WAS DENIED AS NOT BEING 2944 01:40:35,280 --> 01:40:39,200 BENEFICIAL TO THE DEPARTMENT, 2945 01:40:39,200 --> 01:40:42,520 AND SO IN ADDITION TO MY $30,000 2946 01:40:42,520 --> 01:40:44,360 A YEAR IN TUITION, THEY WANTED 2947 01:40:44,360 --> 01:40:45,960 ME TO PAY THEM NEARLY A THOUSAND 2948 01:40:45,960 --> 01:40:47,960 DOLLARS FOR THE DATA THAT I WAS 2949 01:40:47,960 --> 01:40:48,480 REQUESTING. 2950 01:40:48,480 --> 01:40:52,640 I SUBMITTED AN APPEAL FOR THAT, 2951 01:40:52,640 --> 01:40:53,760 ARTICULATED SOME OF THE BARRIERS 2952 01:40:53,760 --> 01:40:56,480 THAT WERE UNIQUE TO MY 2953 01:40:56,480 --> 01:40:57,640 SITUATION, INCLUDING BEING ON 2954 01:40:57,640 --> 01:41:01,200 SOCIAL SECURITY MYSELF, AND WAS 2955 01:41:01,200 --> 01:41:02,600 DENIED AGAIN. 2956 01:41:02,600 --> 01:41:04,720 AND SO WE'RE NOT REALLY GOING TO 2957 01:41:04,720 --> 01:41:06,960 BE ABLE TO DETERMINE THE 2958 01:41:06,960 --> 01:41:09,960 OUTCOMES PEOPLE ARE EXPERIENCING 2959 01:41:09,960 --> 01:41:12,360 IN ANY OTHER WAY BUT QUALITATIVE 2960 01:41:12,360 --> 01:41:13,360 RESEARCH, AS LONG AS WE DON'T 2961 01:41:13,360 --> 01:41:16,720 HAVE THE FUNDING OR THE ACCESS 2962 01:41:16,720 --> 01:41:18,360 TO SOCIAL SECURITY DATA. 2963 01:41:18,360 --> 01:41:20,440 SO I'M HOPING WE CAN DO 2964 01:41:20,440 --> 01:41:22,720 SOMETHING IN TERMS OF IMPROVING 2965 01:41:22,720 --> 01:41:28,200 THAT ACCESS. 2966 01:41:28,200 --> 01:41:29,520 >> THANK YOU FOR THOSE COMMENTS, 2967 01:41:29,520 --> 01:41:29,880 DENA. 2968 01:41:29,880 --> 01:41:30,400 WE APPRECIATE THAT. 2969 01:41:30,400 --> 01:41:33,040 SO WE'LL GO TO STEVEN ISAACSON 2970 01:41:33,040 --> 01:41:34,120 NEXT FOR COMMENTS THAT MAY HAVE 2971 01:41:34,120 --> 01:41:36,960 BEEN WRITTEN IN. 2972 01:41:36,960 --> 01:41:37,720 >> HI THERE. 2973 01:41:37,720 --> 01:41:40,240 I HAVE TWO COMMENTS. 2974 01:41:40,240 --> 01:41:44,840 ONE FROM YETTA MYRICK AND OTHERS 2975 01:41:44,840 --> 01:41:45,920 FROM -- THE FIRST ONE IS FROM 2976 01:41:45,920 --> 01:41:46,480 YETTA. 2977 01:41:46,480 --> 01:41:48,280 I LOVE THE IDEA OF COMMUNITY OF 2978 01:41:48,280 --> 01:41:49,520 PRACTICE. I WOULD LIKE TO SEE 2979 01:41:49,520 --> 01:41:53,480 NOT ONLY RESEARCHERS BUT OTHER 2980 01:41:53,480 --> 01:41:54,360 STAKEHOLDERS, SPECIFICALLY 2981 01:41:54,360 --> 01:41:55,640 AUTISTIC INDIVIDUALS, FAMILY 2982 01:41:55,640 --> 01:41:58,280 MEMBERS, AND COMMUNITY 2983 01:41:58,280 --> 01:41:58,560 PROVIDERS. 2984 01:41:58,560 --> 01:42:00,600 WE NEED TO BRIDGE GAPS. 2985 01:42:00,600 --> 01:42:01,800 ADDITIONALLY, I WOULD LIKE TO 2986 01:42:01,800 --> 01:42:03,320 SEE EVERY STATE AND TERRITORY TO 2987 01:42:03,320 --> 01:42:05,200 HAVE ACCESS TO FUNDING TO FIGURE 2988 01:42:05,200 --> 01:42:08,360 OUT PREVALENCE DATA ACROSS THE 2989 01:42:08,360 --> 01:42:08,680 LIFESPAN. 2990 01:42:08,680 --> 01:42:10,680 WE ARE TRYING TO FIGURE THIS OUT 2991 01:42:10,680 --> 01:42:11,120 IN D.C. . 2992 01:42:11,120 --> 01:42:12,640 IT IS A CHALLENGE DUE TO LACK OF 2993 01:42:12,640 --> 01:42:16,240 FUNDING. 2994 01:42:16,240 --> 01:42:17,200 AND THERE'S A COMMENT OR A 2995 01:42:17,200 --> 01:42:19,760 QUESTION FROM JENNY. 2996 01:42:19,760 --> 01:42:23,240 FOR OBJECTIVE 3, STRENGTHENING 2997 01:42:23,240 --> 01:42:24,120 STATISTICAL DATA GATHERING 2998 01:42:24,120 --> 01:42:25,400 SYSTEMS TO ADVANCE UNDERSTANDING 2999 01:42:25,400 --> 01:42:28,720 OF THE AUTISTIC POPULATION WHILE 3000 01:42:28,720 --> 01:42:31,240 ALLOWING COMPARISONS AND 3001 01:42:31,240 --> 01:42:32,440 LINKAGES ACROSS SYSTEMS AS MUCH 3002 01:42:32,440 --> 01:42:32,840 AS POSSIBLE. 3003 01:42:32,840 --> 01:42:34,080 THE QUESTION IS, CAN WE SPELL 3004 01:42:34,080 --> 01:42:36,560 OUT WHAT WE MEAN BY DIVERSE 3005 01:42:36,560 --> 01:42:39,080 SAMPLES? 3006 01:42:39,080 --> 01:42:43,360 >> SO TO ANSWER THAT QUESTION, 3007 01:42:43,360 --> 01:42:45,880 WITH THE OBJECTIVES OR 3008 01:42:45,880 --> 01:42:46,720 RECOMMENDATIONS AS THEY'RE 3009 01:42:46,720 --> 01:42:48,080 WORDED, WE'RE TRYING TO BE BRIEF 3010 01:42:48,080 --> 01:42:49,560 BECAUSE IF THEY'RE VERY LENGTHY, 3011 01:42:49,560 --> 01:42:51,160 IT'S GOING TO BE HARD FOR PEOPLE 3012 01:42:51,160 --> 01:42:52,360 TO UNDERSTAND THEM. 3013 01:42:52,360 --> 01:42:55,760 SO IN THE TEXT, IT SHOULD BE 3014 01:42:55,760 --> 01:42:57,160 CLEAR WHAT WE'RE TALKING ABOUT 3015 01:42:57,160 --> 01:42:57,800 WHEN WE'RE TALKING ABOUT 3016 01:42:57,800 --> 01:42:59,120 INCLUDING PEOPLE WITH A LOT OF 3017 01:42:59,120 --> 01:43:00,280 DIFFERENT DIVERSE BACKGROUNDS 3018 01:43:00,280 --> 01:43:03,920 AND SAMPLES, WE ALL ARE AWARE 3019 01:43:03,920 --> 01:43:05,440 THAT SAMPLES HISTORICALLY HAVE 3020 01:43:05,440 --> 01:43:08,840 NOT BEEN ALL THAT DIVERSE IN 3021 01:43:08,840 --> 01:43:11,560 TERMS OF GENDER, RACE, ETHNICITY 3022 01:43:11,560 --> 01:43:12,880 AND A LOT OF OTHER FACTORS, SO 3023 01:43:12,880 --> 01:43:14,000 THAT'S WHAT WE'RE TALKING ABOUT, 3024 01:43:14,000 --> 01:43:18,360 BUT WE PROBABLY WON'T WANT TO 3025 01:43:18,360 --> 01:43:19,480 LINK THE OBJECTIVE ITSELF, BUT 3026 01:43:19,480 --> 01:43:20,720 WE CAN INCLUDE SOMETHING IN THE 3027 01:43:20,720 --> 01:43:21,840 CHAPTER THAT WILL MAKE IT CLEAR 3028 01:43:21,840 --> 01:43:22,720 THAT THAT'S WHAT WE'RE TALKING 3029 01:43:22,720 --> 01:43:23,160 ABOUT. 3030 01:43:23,160 --> 01:43:25,040 JUST TO KEEP THINGS CLEAR AND 3031 01:43:25,040 --> 01:43:28,880 EASY TO READ. 3032 01:43:28,880 --> 01:43:31,920 >> SUSAN, A SECOND ONE FROM 3033 01:43:31,920 --> 01:43:32,800 JENNY. 3034 01:43:32,800 --> 01:43:34,640 UNDER THE OBJECTIVE 2, EXPANDING 3035 01:43:34,640 --> 01:43:36,320 AND ENHANCING THE RESEARCH 3036 01:43:36,320 --> 01:43:38,040 WORKFORCE, WITH ATTENTION TO 3037 01:43:38,040 --> 01:43:39,440 DIVERSITY AND INCLUSION AND 3038 01:43:39,440 --> 01:43:40,360 ACCELERATE THE PIPELINE FROM 3039 01:43:40,360 --> 01:43:42,120 RESEARCH TO PRACTICE, THE 3040 01:43:42,120 --> 01:43:44,320 QUESTION IS, WOULD WE BE ABLE TO 3041 01:43:44,320 --> 01:43:46,200 INCLUDE INTERDISCIPLINARY AND 3042 01:43:46,200 --> 01:43:48,400 TRANSDISCIPLINARY RESEARCH, 3043 01:43:48,400 --> 01:43:49,680 ESPECIALLY FOR THOSE WHO ARE 3044 01:43:49,680 --> 01:43:50,560 SWITCHING INTO AUTISM RESEARCH 3045 01:43:50,560 --> 01:43:52,200 FROM A DIFFERENT DISCIPLINE? 3046 01:43:52,200 --> 01:43:57,560 FOR EXAMPLE, THOSE WHO COME FROM 3047 01:43:57,560 --> 01:43:59,000 COMMUNITIES, ARTS, LINGUISTICS. 3048 01:43:59,000 --> 01:44:00,840 AS AN EARLY CAREER RESEARCHER, I 3049 01:44:00,840 --> 01:44:02,560 FIND IT A BIT DIFFICULT TO FIND 3050 01:44:02,560 --> 01:44:07,200 WHERE I FIT WHEN APPLYING FOR 3051 01:44:07,200 --> 01:44:08,800 JOB/FUNDING AS AN 3052 01:44:08,800 --> 01:44:09,840 INTERDISCIPLINARY AUTISTIC 3053 01:44:09,840 --> 01:44:10,120 RESEARCHER. 3054 01:44:10,120 --> 01:44:10,440 >> THANK YOU. 3055 01:44:10,440 --> 01:44:13,320 THAT ACTUALLY WAS IN A PREVIOUS 3056 01:44:13,320 --> 01:44:15,200 STRATEGIC PLAN SO THAT IS 3057 01:44:15,200 --> 01:44:16,160 SOMETHING THAT HAS BEEN THERE. 3058 01:44:16,160 --> 01:44:18,320 THEY WANTED TO ENCOURAGE PEOPLE 3059 01:44:18,320 --> 01:44:21,400 TO JOIN FROM OTHER FIELDS, AND 3060 01:44:21,400 --> 01:44:23,040 TO DO INTERDISCIPLINARY WORK AND 3061 01:44:23,040 --> 01:44:24,320 CERTAINLY WE'LL INCLUDE THAT IN 3062 01:44:24,320 --> 01:44:24,920 THE CHAPTER. 3063 01:44:24,920 --> 01:44:26,240 WE MIGHT NOT BE ABLE TO INCLUDE 3064 01:44:26,240 --> 01:44:29,160 ALL THE WORDS IN THE EXACT 3065 01:44:29,160 --> 01:44:30,600 RECOMMENDATION BECAUSE IT WOULD 3066 01:44:30,600 --> 01:44:32,680 BECOME TOO LONG, BUT IT'S AN 3067 01:44:32,680 --> 01:44:35,120 IMPORTANT POINT, AND THERE ARE A 3068 01:44:35,120 --> 01:44:36,160 LOT OF PEOPLE IN THE AUTISM 3069 01:44:36,160 --> 01:44:37,920 FIELD THAT DO CROSS DISCIPLINES, 3070 01:44:37,920 --> 01:44:39,880 AND THAT'S A REALLY VALUABLE 3071 01:44:39,880 --> 01:44:41,640 FEATURE IN THIS FIELD, SO WE 3072 01:44:41,640 --> 01:44:43,080 WANT TO ENCOURAGE PEOPLE TO DO 3073 01:44:43,080 --> 01:44:43,400 THAT. 3074 01:44:43,400 --> 01:44:45,040 SO THANK YOU. 3075 01:44:45,040 --> 01:44:50,400 JOE PIVEN. 3076 01:44:50,400 --> 01:44:52,280 >> OKAY. 3077 01:44:52,280 --> 01:44:54,880 I JUST WANTED TO ECHO, AND MAYBE 3078 01:44:54,880 --> 01:44:57,400 BUILD ON WHAT PAUL WANG JUST 3079 01:44:57,400 --> 01:44:59,160 SAID, WHICH I THOUGHT WAS A 3080 01:44:59,160 --> 01:45:03,320 REALLY GREAT POINT. 3081 01:45:03,320 --> 01:45:04,320 FRANKLY I'VE THOUGHT ABOUT THIS 3082 01:45:04,320 --> 01:45:06,560 FOR MANY YEARS AND I'D SORT OF 3083 01:45:06,560 --> 01:45:07,160 FORGOTTEN ABOUT IT. 3084 01:45:07,160 --> 01:45:08,680 I WANT TO WEIGH IN AS SOMEONE 3085 01:45:08,680 --> 01:45:11,200 WHO HAS FIRSTHAND KNOWLEDGE 3086 01:45:11,200 --> 01:45:13,600 ABOUT ENDAR. 3087 01:45:13,600 --> 01:45:16,840 YOU KNOW, THIS IS AN INCREDIBLE 3088 01:45:16,840 --> 01:45:19,400 RESOURCE, AND A HUGE INVESTMENT. 3089 01:45:19,400 --> 01:45:21,680 IT HAS REMARKABLE POTENTIAL, BUT 3090 01:45:21,680 --> 01:45:25,640 THERE'S BEEN REMARKABLY LITTLE 3091 01:45:25,640 --> 01:45:26,280 PRODUCTIVITY THAT'S COME OUT OF 3092 01:45:26,280 --> 01:45:27,160 THIS. 3093 01:45:27,160 --> 01:45:28,800 I THINK IT'S AN ISSUE. 3094 01:45:28,800 --> 01:45:31,400 I'M NOT SURE IF THIS IS THE 3095 01:45:31,400 --> 01:45:32,920 FORUM TO DISCUSS THIS. 3096 01:45:32,920 --> 01:45:35,320 IT'S A VERY COMPLICATED ISSUE. 3097 01:45:35,320 --> 01:45:36,520 BUT SINCE IT'S BEEN RAISED, I 3098 01:45:36,520 --> 01:45:39,720 JUST WANTED TO SAY FIRST THAT I 3099 01:45:39,720 --> 01:45:42,240 KIND OF RESONATE WITH WHAT PAUL 3100 01:45:42,240 --> 01:45:42,760 IS SAYING. 3101 01:45:42,760 --> 01:45:45,080 IF THERE IS A ROLE FOR THIS 3102 01:45:45,080 --> 01:45:47,040 STRATEGIC PLAN TO COMMENT ON 3103 01:45:47,040 --> 01:45:52,200 THIS, I THINK IT'S A GOOD IDEA 3104 01:45:52,200 --> 01:45:53,840 IF WE CAN DO IT IN A WAY THAT'S 3105 01:45:53,840 --> 01:45:58,880 SORT OF APPROPRIATE AND 3106 01:45:58,880 --> 01:45:59,200 CONSTRUCTIVE. 3107 01:45:59,200 --> 01:46:01,680 I THINK THERE IS A ROLE FOR 3108 01:46:01,680 --> 01:46:04,560 RE-THINKING AND RE-ASSESSING 3109 01:46:04,560 --> 01:46:07,520 WHAT IS HAPPENING WITH ENDAR, 3110 01:46:07,520 --> 01:46:08,800 BECAUSE OF THESE OBSERVATIONS 3111 01:46:08,800 --> 01:46:11,240 THAT WE'RE ALL HAVING. 3112 01:46:11,240 --> 01:46:15,040 THIS HAS BEEN MANY YEARS, IT'S 3113 01:46:15,040 --> 01:46:16,720 NOT A SHORT-TERM EXPERIENCE. 3114 01:46:16,720 --> 01:46:18,240 SO ANYWAY, I JUST THOUGHT I 3115 01:46:18,240 --> 01:46:19,000 SHOULD WEIGH IN AND SAY 3116 01:46:19,000 --> 01:46:22,280 SOMETHING ABOUT THAT. 3117 01:46:22,280 --> 01:46:23,360 >> THANK YOU, JOE. 3118 01:46:23,360 --> 01:46:24,880 WE PROBABLY WON'T BE ABLE TO GET 3119 01:46:24,880 --> 01:46:26,640 INTO A LOT OF SPECIFICS ABOUT 3120 01:46:26,640 --> 01:46:28,720 ANY ONE RESOURCE, BUT THERE ARE 3121 01:46:28,720 --> 01:46:29,560 PROBABLY GENERAL RECOMMENDATIONS 3122 01:46:29,560 --> 01:46:30,480 THAT WE CAN A MAKE. 3123 01:46:30,480 --> 01:46:32,880 FOR EXAMPLE, TALKING ABOUT 3124 01:46:32,880 --> 01:46:34,080 INCREASING ACCESSIBILITY TO 3125 01:46:34,080 --> 01:46:36,400 RESEARCHERS THAT PROBABLY APPLY 3126 01:46:36,400 --> 01:46:37,440 TO MULTIPLE DIFFERENT RESOURCES 3127 01:46:37,440 --> 01:46:39,520 THAT ARE OUT THERE, BUT IF YOU 3128 01:46:39,520 --> 01:46:40,440 HAVE VERY SPECIFIC COMMENTS TO 3129 01:46:40,440 --> 01:46:41,960 SHARE WITH ENDAR, PROBABLY IT 3130 01:46:41,960 --> 01:46:44,920 MIGHT BE BEST TO CONTACT NIMH 3131 01:46:44,920 --> 01:46:46,200 AND WE CAN CONNECT YOU WITH THE 3132 01:46:46,200 --> 01:46:51,800 PEOPLE THAT MANAGE ENDAR. 3133 01:46:51,800 --> 01:46:53,240 SO THANK YOU. 3134 01:46:53,240 --> 01:47:02,520 JALYNN PRINCE. 3135 01:47:02,520 --> 01:47:03,880 >> THANK YOU. 3136 01:47:03,880 --> 01:47:07,440 I HAVE BEEN LED TO BELIEVE BY 3137 01:47:07,440 --> 01:47:09,640 SEVERAL DIFFERENT SOURCES THAT 3138 01:47:09,640 --> 01:47:12,480 WORKING WITH -- OR THE CDC HAS 3139 01:47:12,480 --> 01:47:15,120 MORE OF A MANDATE TO LOOK AT 3140 01:47:15,120 --> 01:47:19,040 RESOURCES OR LOOK AT RESEARCH 3141 01:47:19,040 --> 01:47:25,400 DIRECTED TOWARD CHILDREN THAN TO 3142 01:47:25,400 --> 01:47:25,600 ADULTS. 3143 01:47:25,600 --> 01:47:27,280 IF THAT IS THE CASE, DO WE NEED 3144 01:47:27,280 --> 01:47:28,440 TO MAKE A RECOMMENDATION OR DO 3145 01:47:28,440 --> 01:47:32,040 WE AS INDIVIDUALS NEED TO MAKE 3146 01:47:32,040 --> 01:47:33,480 CERTAIN THAT WE COULD GET 3147 01:47:33,480 --> 01:47:34,560 LANGUAGE INTO CONGRESS THAT 3148 01:47:34,560 --> 01:47:37,440 WOULD OPEN THE DOOR FOR GREATER 3149 01:47:37,440 --> 01:47:39,680 RESEARCH FOR ADULTS AND ADULT 3150 01:47:39,680 --> 01:47:43,760 ISSUES AND PREVALENCE OUT OF THE 3151 01:47:43,760 --> 01:47:45,080 CDC? 3152 01:47:45,080 --> 01:47:47,600 BECAUSE AS I UNDERSTAND IT, THE 3153 01:47:47,600 --> 01:47:51,960 RESEARCH ABOUT ADULTS AS FAR AS 3154 01:47:51,960 --> 01:47:53,600 PREVALENCE GOES, THAT THE CDC 3155 01:47:53,600 --> 01:47:58,600 HAD BEEN ABLE TO GET IN ON WAS 3156 01:47:58,600 --> 01:48:00,480 NOT NECESSARILY PRIMARY SOURCES, 3157 01:48:00,480 --> 01:48:02,800 BUT IT WAS COMPILED BY OTHER 3158 01:48:02,800 --> 01:48:04,480 SOURCES TO GET AN ESTIMATE OF 3159 01:48:04,480 --> 01:48:07,480 THE PREVALENCE OUT THERE. 3160 01:48:07,480 --> 01:48:09,360 SO ARE THERE ACTIONS THAT EITHER 3161 01:48:09,360 --> 01:48:15,120 WE CAN RECOMMEND IN A STRATEGIC 3162 01:48:15,120 --> 01:48:18,440 PLAN OR THAT WE SHOULD MAYBE 3163 01:48:18,440 --> 01:48:19,960 LOOK AT WITHIN OUR CONGRESSIONAL 3164 01:48:19,960 --> 01:48:23,600 OR LEGISLATIVE DISTRICTS? 3165 01:48:23,600 --> 01:48:25,000 >> THANK YOU, JALYNN. 3166 01:48:25,000 --> 01:48:26,160 I'LL GIVE STEWART THE FLOOR IN 3167 01:48:26,160 --> 01:48:27,720 CASE HE HAS SOME COMMENTS FROM 3168 01:48:27,720 --> 01:48:30,040 CDC ABOUT THAT. 3169 01:48:30,040 --> 01:48:30,480 >> GREAT. 3170 01:48:30,480 --> 01:48:36,840 THANK YOU VERY MUCH, SUSAN. 3171 01:48:36,840 --> 01:48:38,240 SO I DON'T KNOW THE EXACT 3172 01:48:38,240 --> 01:48:39,400 LANGUAGE IN THE APPROPRIATIONS 3173 01:48:39,400 --> 01:48:41,080 WITH REGARD TO WHAT CDC IS BEING 3174 01:48:41,080 --> 01:48:44,320 DIRECTED TO DO, WHETHER IT 3175 01:48:44,320 --> 01:48:47,480 SPECIFIES CHILDREN. 3176 01:48:47,480 --> 01:48:49,400 I KNOW THAT CDC IS MOVING 3177 01:48:49,400 --> 01:48:52,720 TOWARDS DOING MORE ACTIVITIES IN 3178 01:48:52,720 --> 01:48:55,640 THE ADULT LANE FOR BOTH SEED, 3179 01:48:55,640 --> 01:49:03,840 WITH THE RESEARCH STUDY, TO 3180 01:49:03,840 --> 01:49:10,200 UNDERSTAND ASPECTS OF AUTISM, 3181 01:49:10,200 --> 01:49:13,240 BOTH IN RISKS FOR AUTISM IN THE 3182 01:49:13,240 --> 01:49:15,240 GENETIC AS WELL AS THE 3183 01:49:15,240 --> 01:49:21,320 NON-GENETIC AREAS, AND ALSO IN 3184 01:49:21,320 --> 01:49:22,480 THE PREVALENCE MONITORING THAT'S 3185 01:49:22,480 --> 01:49:24,720 DONE THROUGH THE ADAM NETWORK, 3186 01:49:24,720 --> 01:49:26,800 SO BOTH OF THESE ARE EXPANDING 3187 01:49:26,800 --> 01:49:29,120 INTO THE ADOLESCENT AND ADULT 3188 01:49:29,120 --> 01:49:31,760 LANES AND WE WOULDN'T BE ABLE TO 3189 01:49:31,760 --> 01:49:33,240 DO THAT IF SPECIFICALLY IT SAID 3190 01:49:33,240 --> 01:49:36,120 IN THE APPROPRIATIONS THAT WE 3191 01:49:36,120 --> 01:49:39,960 COULD ONLY RESTRICT OUR WORK TO 3192 01:49:39,960 --> 01:49:40,200 CHILDREN. 3193 01:49:40,200 --> 01:49:43,640 SO I WOULD BE SURPRISED IF THERE 3194 01:49:43,640 --> 01:49:47,840 WAS SUCH SPECIFICITY THAT 3195 01:49:47,840 --> 01:49:49,680 RESTRICTED THE WORK TO THE 3196 01:49:49,680 --> 01:49:51,440 CHILDHOOD LANE, BUT WE CAN LOOK 3197 01:49:51,440 --> 01:49:57,120 INTO THAT FURTHER. 3198 01:49:57,120 --> 01:49:58,120 SUSAN HAD BROUGHT UP EARLIER 3199 01:49:58,120 --> 01:50:00,400 THAT I MAY HAVE THOUGHTS ON THE 3200 01:50:00,400 --> 01:50:04,000 SECTION ON PREVALENCE MONITORING 3201 01:50:04,000 --> 01:50:05,000 IN THE STRATEGIC PLAN. 3202 01:50:05,000 --> 01:50:09,120 I THINK IT'S VERY WELL WRITTEN. 3203 01:50:09,120 --> 01:50:12,920 IT LAYS OUT THE AREAS WHERE 3204 01:50:12,920 --> 01:50:15,560 PREVALENCE MONITORING HAS BEEN 3205 01:50:15,560 --> 01:50:17,840 OCCURRING SUCH AS IN OBTAINING 3206 01:50:17,840 --> 01:50:21,880 SURVEY DATA, OBTAINING 3207 01:50:21,880 --> 01:50:27,280 ADMINISTRATIVE PREVALENCE USING 3208 01:50:27,280 --> 01:50:29,120 SUCH DATASETS AS HEALTHCARE 3209 01:50:29,120 --> 01:50:34,240 CLAIMS DATA, OR ACTIVE 3210 01:50:34,240 --> 01:50:35,560 MONITORING THROUGH DIRECT 3211 01:50:35,560 --> 01:50:40,480 EXAMINATION OF INDIVIDUALS AND 3212 01:50:40,480 --> 01:50:41,680 DETERMINING -- INCLUDING THEM IF 3213 01:50:41,680 --> 01:50:45,640 THEY HAVE THE AUTISM SPECTRUM 3214 01:50:45,640 --> 01:50:46,840 DISORDER DIAGNOSIS. 3215 01:50:46,840 --> 01:50:48,400 THE SECTION VERY WELL LAYS OUT 3216 01:50:48,400 --> 01:50:52,640 SOME OF THE LIMITATIONS WITH 3217 01:50:52,640 --> 01:50:55,040 VARIOUS APPROACHES TO OBTAINING 3218 01:50:55,040 --> 01:50:58,520 A PREVALENCE VALUE INCLUDING 3219 01:50:58,520 --> 01:51:02,360 UNCERTAINTY OF THE DIAGNOSIS, 3220 01:51:02,360 --> 01:51:04,800 WHETHER THE APPROACH CAN PROVIDE 3221 01:51:04,800 --> 01:51:08,600 A REGIONAL OR NATIONAL 3222 01:51:08,600 --> 01:51:11,000 REPRESENTATIVE NUMBER, THE 3223 01:51:11,000 --> 01:51:14,080 PARTICIPATION IN VARIOUS 3224 01:51:14,080 --> 01:51:15,080 APPROACHES AS WELL AS THE COSTS 3225 01:51:15,080 --> 01:51:16,560 OF VARIOUS APPROACHES. 3226 01:51:16,560 --> 01:51:22,960 AND I THINK THAT IT -- IN 3227 01:51:22,960 --> 01:51:24,160 THINKING ABOUT VARIOUS 3228 01:51:24,160 --> 01:51:25,120 APPROACHES, IT'S ALSO IMPORTANT 3229 01:51:25,120 --> 01:51:26,320 TO REALIZE THAT THE NUMBER OR 3230 01:51:26,320 --> 01:51:31,360 THE PREVALENCE NUMBER IS ONLY -- 3231 01:51:31,360 --> 01:51:32,760 IS IMPORTANT, BUT IT'S ONLY 3232 01:51:32,760 --> 01:51:40,120 PARTLY HELPFUL IN -- FOR THE 3233 01:51:40,120 --> 01:51:43,600 AUTISM COMMUNITY BECAUSE WHAT 3234 01:51:43,600 --> 01:51:44,720 REALLY IS IMPORTANT TO KNOW ARE 3235 01:51:44,720 --> 01:51:45,800 THE NEEDS AND THE 3236 01:51:45,800 --> 01:51:48,400 CHARACTERISTICS OF PEOPLE WITH 3237 01:51:48,400 --> 01:51:49,840 AUTISM IN THE GENERAL COMMUNITY 3238 01:51:49,840 --> 01:51:52,680 AND ARE THOSE NEEDS BEING 3239 01:51:52,680 --> 01:51:53,960 FULFILLED. 3240 01:51:53,960 --> 01:51:56,400 SO CERTAIN PREVALENCE MONITORING 3241 01:51:56,400 --> 01:51:57,920 APPROACHES DON'T NECESSARILY GET 3242 01:51:57,920 --> 01:52:01,120 AT THOSE QUESTIONS, SO THAT 3243 01:52:01,120 --> 01:52:05,600 NEEDS TO BE CONSIDERED IN 3244 01:52:05,600 --> 01:52:09,280 DEVELOPING PREVALENCE MONITORING 3245 01:52:09,280 --> 01:52:10,720 APPROACHES. 3246 01:52:10,720 --> 01:52:12,040 BUT I THINK WHAT SHOULD BE ADDED 3247 01:52:12,040 --> 01:52:14,760 TO THE PREVALENCE MONITORING 3248 01:52:14,760 --> 01:52:17,320 SECTION FOCUSES ON THE WAY THAT 3249 01:52:17,320 --> 01:52:22,560 DATA ARE OBTAINED BECAUSE -- NOT 3250 01:52:22,560 --> 01:52:24,080 ONLY OBTAIN AND EVALUATED 3251 01:52:24,080 --> 01:52:24,960 BECAUSE THAT'S BEEN CHANGING 3252 01:52:24,960 --> 01:52:28,800 WITH TIME, THAT THERE HAVE BEEN 3253 01:52:28,800 --> 01:52:33,840 MUCH MORE OF A FOCUS ON BIG DATA 3254 01:52:33,840 --> 01:52:38,800 AND DATA LINKAGES, AND IT'S 3255 01:52:38,800 --> 01:52:42,200 THROUGH THESE TYPES OF 3256 01:52:42,200 --> 01:52:43,920 APPROACHES THAT MORE INFORMATION 3257 01:52:43,920 --> 01:52:45,800 THAT CAN BE USEFUL FOR 3258 01:52:45,800 --> 01:52:48,320 PREVALENCE MONITORING CAN BE 3259 01:52:48,320 --> 01:52:52,920 COLLECTED AND SO SUBSEQUENTLY 3260 01:52:52,920 --> 01:52:54,440 DATA SCIENCE APPROACHES TO 3261 01:52:54,440 --> 01:52:57,520 EVALUATE WAYS TO IMPROVE ON THE 3262 01:52:57,520 --> 01:53:03,400 QUALITY OF THE DATA AND THE 3263 01:53:03,400 --> 01:53:04,440 INFORMATION WITHIN THE DATA ARE 3264 01:53:04,440 --> 01:53:07,440 IMPORTANT TO CONSIDER TO OBTAIN 3265 01:53:07,440 --> 01:53:09,760 A PREVALENCE NUMBER IN A TIMELY 3266 01:53:09,760 --> 01:53:11,280 AND EFFICIENT AND A VALID 3267 01:53:11,280 --> 01:53:13,920 FASHION. 3268 01:53:13,920 --> 01:53:15,760 SO I THINK THE MAIN POINT IS 3269 01:53:15,760 --> 01:53:17,000 THAT THERE ARE CURRENTLY A 3270 01:53:17,000 --> 01:53:18,160 NUMBER OF APPROACHES THAT HAVE 3271 01:53:18,160 --> 01:53:21,040 BEEN USED TO OBTAIN A PREVALENCE 3272 01:53:21,040 --> 01:53:23,200 NUMBER, BUT DATA ARE CHANGING, 3273 01:53:23,200 --> 01:53:25,160 AND THE WAY DATA ARE OBTAINED 3274 01:53:25,160 --> 01:53:29,360 AND THE WAY DATA ARE EVALUATED, 3275 01:53:29,360 --> 01:53:32,520 SO SOME CONSIDERATIONS TO THESE 3276 01:53:32,520 --> 01:53:35,800 CHANGES IN THE ENVIRONMENT AND 3277 01:53:35,800 --> 01:53:39,840 HOW DATA SCIENCE CAN HELP 3278 01:53:39,840 --> 01:53:41,040 IMPROVE PREVALENCE ESTIMATES AND 3279 01:53:41,040 --> 01:53:42,440 THE TIMELY AND EFFICIENT MANNER 3280 01:53:42,440 --> 01:53:44,760 OF OBTAINING THOSE PREVALENCE 3281 01:53:44,760 --> 01:53:48,280 ESTIMATES, AND ALSO OBTAINING 3282 01:53:48,280 --> 01:53:49,240 MORE THAN JUST A NUMBER. 3283 01:53:49,240 --> 01:53:53,160 LEARNING MORE ABOUT THE NEEDS OF 3284 01:53:53,160 --> 01:53:53,920 INDIVIDUALS IN THEIR COMMUNITIES 3285 01:53:53,920 --> 01:53:57,440 AND HOW THEIR NEEDS CAN WE BESTE 3286 01:53:57,440 --> 01:53:59,400 ADDRESSED SHOULD BE A CRITICAL 3287 01:53:59,400 --> 01:54:02,920 COMPONENT OF OBTAINING THE 3288 01:54:02,920 --> 01:54:03,560 PREVALENCE. 3289 01:54:03,560 --> 01:54:05,000 >> THANK YOU SO MUCH, STUART, 3290 01:54:05,000 --> 01:54:05,440 FOR THOSE COMMENTS. 3291 01:54:05,440 --> 01:54:07,720 THAT WILL BE VERY HELPFUL TO US 3292 01:54:07,720 --> 01:54:10,360 AS WE REFINE THAT SECTION OF 3293 01:54:10,360 --> 01:54:10,800 THIS QUESTION. 3294 01:54:10,800 --> 01:54:12,840 AND I WILL GIVE THE LAST COMMENT 3295 01:54:12,840 --> 01:54:21,440 ON QUESTION 7 TO JOE PIVEN. 3296 01:54:21,440 --> 01:54:23,480 >> I'M SORRY, I FORGOT TO LOWER 3297 01:54:23,480 --> 01:54:24,040 MY HAND. 3298 01:54:24,040 --> 01:54:24,720 MY APOLOGIES. 3299 01:54:24,720 --> 01:54:25,560 >> THAT'S NOT A PROBLEM. 3300 01:54:25,560 --> 01:54:26,520 OKAY. 3301 01:54:26,520 --> 01:54:30,360 SO THEN THANK YOU SO MUCH FOR 3302 01:54:30,360 --> 01:54:31,560 THESE COMMENTS, AND WE WILL MOVE 3303 01:54:31,560 --> 01:54:33,120 ON TO THE NEXT SECTION, WHICH IS 3304 01:54:33,120 --> 01:54:36,360 THE CROSS-CUTTING THEME OF SEX 3305 01:54:36,360 --> 01:54:36,960 AND GENDER. 3306 01:54:36,960 --> 01:54:41,000 AND WANT TO GET YOUR THOUGHTS 3307 01:54:41,000 --> 01:54:42,000 ABOUT ANYTHING THAT WE SHOULD 3308 01:54:42,000 --> 01:54:42,760 INCLUDE HERE. 3309 01:54:42,760 --> 01:54:43,840 AGAIN, THE SLIDE IS AN ATTEMPT 3310 01:54:43,840 --> 01:54:45,120 TO JUST SUMMARIZE A FEW THINGS 3311 01:54:45,120 --> 01:54:50,480 THAT ARE IN THE CHAPTER SO FAR, 3312 01:54:50,480 --> 01:54:52,080 BUT WE CAN REFINE IT BASED ON 3313 01:54:52,080 --> 01:54:52,520 THE DISCUSSION HERE. 3314 01:54:52,520 --> 01:54:54,000 SO SOME OF THE TOPICS INCLUDED 3315 01:54:54,000 --> 01:54:56,160 ARE SEX AND GENDER DISPARITIES 3316 01:54:56,160 --> 01:54:59,560 IN DIAGNOSIS AND DIAGNOSTIC 3317 01:54:59,560 --> 01:55:00,520 CRITERIA. 3318 01:55:00,520 --> 01:55:01,440 BIOLOGICAL DIFFERENCES BETWEEN 3319 01:55:01,440 --> 01:55:03,400 SEX AND GENDER. 3320 01:55:03,400 --> 01:55:05,160 DIFFERENCES IN SOCIALIZATION OF 3321 01:55:05,160 --> 01:55:07,600 DIFFERENT SEX AND GENDERS. 3322 01:55:07,600 --> 01:55:09,200 DIFFERENCES ACROSS THE LIFESPAN 3323 01:55:09,200 --> 01:55:11,600 INCLUDING FOR OLDER WOMEN. 3324 01:55:11,600 --> 01:55:17,840 AND DIFFERENCES IN SEXUALITY. 3325 01:55:17,840 --> 01:55:19,640 I BELIEVE THAT REPRODUCTIVE 3326 01:55:19,640 --> 01:55:22,520 HEALTH IS IN THIS SECTION AS 3327 01:55:22,520 --> 01:55:24,280 WELL, BUT WE WILL OPEN THIS UP 3328 01:55:24,280 --> 01:55:25,640 FOR ANY OTHER IMPORTANT TOPICS 3329 01:55:25,640 --> 01:55:27,480 THAT WE NEED TO INCLUDE IN THIS 3330 01:55:27,480 --> 01:55:30,640 SECTION OR IF THERE HAVE BEEN 3331 01:55:30,640 --> 01:55:31,920 SOME CHANGES IN THE FIELD IN THE 3332 01:55:31,920 --> 01:55:33,360 PAST FEW YEARS SINCE THE LAST 3333 01:55:33,360 --> 01:55:34,240 STRATEGIC PLAN THAT COULD IMPACT 3334 01:55:34,240 --> 01:55:35,200 THE DIRECTION THAT WE SHOULD 3335 01:55:35,200 --> 01:55:45,600 TAKE WITH THIS TOPIC. 3336 01:55:52,160 --> 01:55:55,480 DENA. 3337 01:55:55,480 --> 01:55:57,240 >> MY VIDEO WAS TURNED OFF. 3338 01:55:57,240 --> 01:55:59,400 BUT ANYWAY, I DO BELIEVE THAT 3339 01:55:59,400 --> 01:56:04,440 THERE HAVE IS IS SOME RESEARCHG 3340 01:56:04,440 --> 01:56:07,080 AT THE MALE/FEMALE RATIO IN 3341 01:56:07,080 --> 01:56:08,600 ADULTHOOD, FINDING THAT IT 3342 01:56:08,600 --> 01:56:10,760 PRETTY MUCH DISAPPEARS IN 3343 01:56:10,760 --> 01:56:11,440 ADULTHOOD. 3344 01:56:11,440 --> 01:56:12,760 AND I KNOW THAT PEOPLE WHO ARE 3345 01:56:12,760 --> 01:56:14,160 WORKING IN THE FIELD AS SOCIAL 3346 01:56:14,160 --> 01:56:17,800 WORKERS AND THERAPISTS ARE ALSO 3347 01:56:17,800 --> 01:56:23,600 FINDING A CLOSER TO AT LEAST 3348 01:56:23,600 --> 01:56:25,040 2 TO 1 RATIO OF MALE TO FEMALE, 3349 01:56:25,040 --> 01:56:26,320 SO I WANT TO MAKE SURE THAT'S 3350 01:56:26,320 --> 01:56:26,760 ADDRESSED. 3351 01:56:26,760 --> 01:56:30,360 AGAIN TOUCHING BASE ON TRAUMA 3352 01:56:30,360 --> 01:56:31,680 CARE, MATERNITY CARE, THERE'S A 3353 01:56:31,680 --> 01:56:33,400 LOT OF GOOD RESEARCH OUT ABOUT 3354 01:56:33,400 --> 01:56:38,120 THE DIFFERENCES IN PREPARTUM, 3355 01:56:38,120 --> 01:56:40,640 PARTUM AND POSTPARTUM CARE, AND 3356 01:56:40,640 --> 01:56:42,600 LABOR AND DELIVERY FOR AUTISTIC 3357 01:56:42,600 --> 01:56:47,080 ADULT WOMEN AND OTHERS WHO HAVE 3358 01:56:47,080 --> 01:56:47,360 UTERUSES. 3359 01:56:47,360 --> 01:56:50,600 SO I WOULD THICK T THINK THAT WT 3360 01:56:50,600 --> 01:56:52,360 WANT TO TOUCH BASE ON THOSE 3361 01:56:52,360 --> 01:56:54,360 ISSUES. 3362 01:56:54,360 --> 01:56:57,160 >> THANK YOU, DENA. 3363 01:56:57,160 --> 01:56:58,680 I'LL TAKE NOTE OF THAT. 3364 01:56:58,680 --> 01:56:59,880 NEXT WE'LL TAKE A COMMENT FROM 3365 01:56:59,880 --> 01:57:09,760 JENNIFER JOHNSON. 3366 01:57:09,760 --> 01:57:11,600 >> ARE YOU ABLE -- ARE YOU ABLE 3367 01:57:11,600 --> 01:57:12,200 TO HEAR ME? 3368 01:57:12,200 --> 01:57:14,120 >> YES. 3369 01:57:14,120 --> 01:57:18,720 >> OKAY. 3370 01:57:18,720 --> 01:57:20,360 SO I'LL JUST KIND OF BUILD OFF 3371 01:57:20,360 --> 01:57:21,760 OF WHAT DENA WAS SAYING. 3372 01:57:21,760 --> 01:57:23,400 BUT I THINK JUST GENERALLY, 3373 01:57:23,400 --> 01:57:27,560 GETTING ACCESS TO TRAINING ABOUT 3374 01:57:27,560 --> 01:57:29,520 SEXUALITY AND SEX EDUCATION IN 3375 01:57:29,520 --> 01:57:31,840 GENERAL IS REALLY IMPORTANT, AND 3376 01:57:31,840 --> 01:57:38,080 THEI THINK WE NEED TO MAKE SURE 3377 01:57:38,080 --> 01:57:41,880 THAT'S IN THE STRATEGIC PLAN. 3378 01:57:41,880 --> 01:57:43,960 AND THEN WE ALSO PROBABLY WANT 3379 01:57:43,960 --> 01:57:45,080 TO MAKE SURE THERE'S INFORMATION 3380 01:57:45,080 --> 01:57:47,600 IN THERE ABOUT RECOGNIZING 3381 01:57:47,600 --> 01:57:49,320 SEXUAL ABUSE AND BEING ABLE TO 3382 01:57:49,320 --> 01:57:51,520 REPORT THAT. 3383 01:57:51,520 --> 01:57:52,520 BECAUSE AGAIN, THERE'S NOT A LOT 3384 01:57:52,520 --> 01:57:54,160 OF TRAINING THAT GOES ON THERE 3385 01:57:54,160 --> 01:57:56,240 EITHER. 3386 01:57:56,240 --> 01:57:57,760 AND SO I THINK THAT'S IMPORTANT 3387 01:57:57,760 --> 01:57:59,200 TO INCLUDE. 3388 01:57:59,200 --> 01:58:00,800 BUT ALSO JUST WANT TO SUPPORT 3389 01:58:00,800 --> 01:58:05,720 THE COMMENTS ABOUT ACCESS TO 3390 01:58:05,720 --> 01:58:08,600 MATERNAL HEALTHCARE AND THE 3391 01:58:08,600 --> 01:58:14,400 IMPORTANCE OF ACCESSIBILITY AND 3392 01:58:14,400 --> 01:58:14,600 CARE. 3393 01:58:14,600 --> 01:58:15,880 >> THANK YOU, JENNIFER, FOR 3394 01:58:15,880 --> 01:58:16,680 THOSE COMMENTS. 3395 01:58:16,680 --> 01:58:17,080 THAT'S HELPFUL. 3396 01:58:17,080 --> 01:58:18,480 WE DIDN'T SAY ANYTHING SPECIFIC 3397 01:58:18,480 --> 01:58:20,160 ON THE SLIDE ABOUT ANYTHING THAT 3398 01:58:20,160 --> 01:58:25,760 WOULD BE MALE-SPECIFIC, BUT IF 3399 01:58:25,760 --> 01:58:28,000 THERE IS, THE TITLE IS SEX AND 3400 01:58:28,000 --> 01:58:28,960 GENDER SO IT COULD INCLUDE 3401 01:58:28,960 --> 01:58:30,000 ANYTHING THAT MIGHT BE 3402 01:58:30,000 --> 01:58:40,360 MALE-SPECIFIC ALSO. 3403 01:58:55,760 --> 01:58:56,800 SO ANY OTHER THOUGHTS THAT YOU 3404 01:58:56,800 --> 01:58:58,680 ALL HAVE BEEN HAVING ABOUT THIS 3405 01:58:58,680 --> 01:58:59,360 TOPIC? 3406 01:58:59,360 --> 01:59:03,560 YETTA. 3407 01:59:03,560 --> 01:59:05,120 >> OKAY, I HOPE YOU CAN HEAR ME. 3408 01:59:05,120 --> 01:59:06,640 JUST WANT TO PIGGY BACK ABOUT 3409 01:59:06,640 --> 01:59:10,400 THE SEXUALITY EDUCATION. 3410 01:59:10,400 --> 01:59:13,840 MAKING SURE THAT THERE'S 3411 01:59:13,840 --> 01:59:14,560 SOMETHING OFFERED ABOUT CONSENT 3412 01:59:14,560 --> 01:59:16,400 AND TEACHING CONSENT. 3413 01:59:16,400 --> 01:59:19,040 IT'S ONE THING OBVIOUSLY TO 3414 01:59:19,040 --> 01:59:20,760 REPORT ABOUT ABUSE, BUT ANOTHER 3415 01:59:20,760 --> 01:59:22,120 PIECE THAT I'VE BEEN LEARNING, 3416 01:59:22,120 --> 01:59:23,840 BECAUSE I'M WORKING WITH SOMEONE 3417 01:59:23,840 --> 01:59:26,760 LOCALLY IN D.C. WHO DOES DO 3418 01:59:26,760 --> 01:59:27,880 SEXUALITY AND EDUCATION 3419 01:59:27,880 --> 01:59:30,360 TRAINING, IS REALLY TEACHING 3420 01:59:30,360 --> 01:59:31,280 ABOUT CONSENT EARLY ON. 3421 01:59:31,280 --> 01:59:33,240 SO I JUST WANTED TO THROW THAT 3422 01:59:33,240 --> 01:59:34,960 INTO THE MIX AS SOMETHING WE 3423 01:59:34,960 --> 01:59:36,320 SHOULD MAYBE BE CONSIDERING. 3424 01:59:36,320 --> 01:59:37,560 THANKS. 3425 01:59:37,560 --> 01:59:45,640 >> THANK YOU. 3426 01:59:45,640 --> 01:59:48,440 SUSAN RIVERA. 3427 01:59:48,440 --> 01:59:50,200 >> HEY, THANKS, SUSAN. 3428 01:59:50,200 --> 01:59:53,120 I'M SEEING -- I'M NOT SEEING 3429 01:59:53,120 --> 01:59:55,560 ANYTHING IN THE REPORT ABOUT -- 3430 01:59:55,560 --> 01:59:59,360 THAT MENTIONS NON-BINARY OR 3431 01:59:59,360 --> 02:00:00,360 TRANSSEXUAL, SO I THINK WE NEED 3432 02:00:00,360 --> 02:00:03,000 TO BE ATTENTIVE TO THAT. 3433 02:00:03,000 --> 02:00:04,760 AND MAKE SURE THAT WE SAY 3434 02:00:04,760 --> 02:00:07,040 SOMETHING ABOUT THAT IN THIS 3435 02:00:07,040 --> 02:00:09,200 CHAPTER. 3436 02:00:09,200 --> 02:00:11,200 BECAUSE I THINK THERE'S GOING TO 3437 02:00:11,200 --> 02:00:14,920 BE RIL REALLY HEAVILY ON THE MIS 3438 02:00:14,920 --> 02:00:16,400 OF SOME OF OUR STAKEHOLDERS. 3439 02:00:16,400 --> 02:00:17,720 >> YES, THERE IS AN INTENT OF 3440 02:00:17,720 --> 02:00:18,840 THAT, AND IF IT'S NOT INCLUDED, 3441 02:00:18,840 --> 02:00:20,360 IT PROBABLY WAS THAT WE WERE 3442 02:00:20,360 --> 02:00:21,280 RUNNING A LITTLE SHORT OF TIME 3443 02:00:21,280 --> 02:00:22,840 AS WE WERE TRYING TO GET THIS 3444 02:00:22,840 --> 02:00:23,760 FIRST DRAFT READY, BUT THANK YOU 3445 02:00:23,760 --> 02:00:25,080 FOR MENTIONING THAT. 3446 02:00:25,080 --> 02:00:26,680 ARE THERE -- I KNOW OF ISSUES 3447 02:00:26,680 --> 02:00:28,800 I'VE HEARD ABOUT BUT FROM YOUR 3448 02:00:28,800 --> 02:00:29,520 PERSPECTIVE, ARE THERE 3449 02:00:29,520 --> 02:00:31,640 PARTICULAR ONES THAT YOU WOULD 3450 02:00:31,640 --> 02:00:36,680 LIKE TO BRING TO OUR ATTENTION? 3451 02:00:36,680 --> 02:00:38,240 >> NOT MORE SPECIFIC THAN THIS. 3452 02:00:38,240 --> 02:00:40,480 IT'S JUST BEEN VERY, VERY 3453 02:00:40,480 --> 02:00:45,200 UNDERREPORTED AND UNDERSTUDIED. 3454 02:00:45,200 --> 02:00:50,120 THE PREVALENCE OF NON-BINARY AND 3455 02:00:50,120 --> 02:00:50,800 TRANSGENDER INDIVIDUALS ON THE 3456 02:00:50,800 --> 02:00:52,280 AUTISM SPECTRUM. 3457 02:00:52,280 --> 02:00:56,240 SOLACESO AS I HEAR IT TALKED ABN 3458 02:00:56,240 --> 02:00:57,880 THE AUTISM COMMUNITIES, THERE IS 3459 02:00:57,880 --> 02:01:00,080 AN ANGER ABOUT THAT, AND A 3460 02:01:00,080 --> 02:01:01,480 FEELING THAT THERE'S A LACK OF 3461 02:01:01,480 --> 02:01:05,000 RESEARCH ABOUT THAT. 3462 02:01:05,000 --> 02:01:05,960 >> THANK YOU. 3463 02:01:05,960 --> 02:01:07,920 THAT'S VERY HELPFUL, AND WE'LL 3464 02:01:07,920 --> 02:01:09,240 BE SURE TO HAVE SOME INFORMATION 3465 02:01:09,240 --> 02:01:11,440 ON IT BUT WOULD WELCOME ANY 3466 02:01:11,440 --> 02:01:12,760 INPUT FROM THE COMMITTEE ON IF 3467 02:01:12,760 --> 02:01:13,840 YOU RUN ACROSS SOMETHING THAT 3468 02:01:13,840 --> 02:01:16,480 WOULD BE HELPFUL FOR THAT. 3469 02:01:16,480 --> 02:01:21,080 IVANOVA. 3470 02:01:21,080 --> 02:01:24,120 >> HELLO, THIS IS IVANOVA. 3471 02:01:24,120 --> 02:01:31,800 AND MY QUESTION IS, WHAT 3472 02:01:31,800 --> 02:01:32,760 RESEARCHER ARE LOOKING AT 3473 02:01:32,760 --> 02:01:34,840 SERVICE PROVIDERS AND MAKING 3474 02:01:34,840 --> 02:01:35,280 SURE -- 3475 02:01:35,280 --> 02:01:40,640 [BABY CRYING] 3476 02:01:40,640 --> 02:01:42,600 SORRY ABOUT THAT. 3477 02:01:42,600 --> 02:01:46,200 IS THERE ANY LOOK AT MAKING SURE 3478 02:01:46,200 --> 02:01:49,840 THAT AUTISTICS THAT ARE 3479 02:01:49,840 --> 02:01:51,680 NON-SPEAKING, THAT HAVE HIGH 3480 02:01:51,680 --> 02:01:57,400 SUPPORT NEEDS, CAN GET ACCESS TO 3481 02:01:57,400 --> 02:01:58,720 SEX EDUCATION AND TO GETTING 3482 02:01:58,720 --> 02:02:05,560 SUPPORT TO BE ABLE TO HAVE 3483 02:02:05,560 --> 02:02:07,440 THEIR -- TO HAVE -- BE SUPPORTED 3484 02:02:07,440 --> 02:02:15,720 IN DOING -- BEING ABLE TO 3485 02:02:15,720 --> 02:02:18,360 EXPLORE THAT WHILE THEY'RE IN A 3486 02:02:18,360 --> 02:02:21,640 SUPPORTIVE LIVING SITUATION 3487 02:02:21,640 --> 02:02:26,040 OR -- FACILITY SITUATION 3488 02:02:26,040 --> 02:02:29,400 [INAUDIBLE] SITUATION. 3489 02:02:29,400 --> 02:02:30,280 SORRY ABOUT THE CHILDREN IN THE 3490 02:02:30,280 --> 02:02:39,160 BACKGROUND. 3491 02:02:39,160 --> 02:02:41,240 >> SORRY, I FORGOT TO UP MUTE 3492 02:02:41,240 --> 02:02:43,520 MYSELF. 3493 02:02:43,520 --> 02:02:43,760 UNMUTE 3494 02:02:43,760 --> 02:02:44,080 MYSELF. 3495 02:02:44,080 --> 02:02:46,040 I WAS ALSO TRYING TO MAKE SURE 3496 02:02:46,040 --> 02:02:48,000 THERE WAS NOT BACKGROUND NOISE 3497 02:02:48,000 --> 02:02:49,120 GOING ON FROM MY COMPUTER 3498 02:02:49,120 --> 02:02:51,320 BECAUSE IT MAKES THE LITTLE DING 3499 02:02:51,320 --> 02:02:52,600 SOUNDS SOMETIMES. 3500 02:02:52,600 --> 02:02:54,800 IT SOUNDED LIKE YOU WERE TALKING 3501 02:02:54,800 --> 02:02:58,000 ABOUT EXPLORATION OF SEXUALITY 3502 02:02:58,000 --> 02:02:59,280 AND CONCERN ABOUT MAKING SURE 3503 02:02:59,280 --> 02:03:01,800 THAT PEOPLE WHO ARE NON-SPEAKING 3504 02:03:01,800 --> 02:03:03,200 ARE INCLUDED IN SEX EDUCATION, 3505 02:03:03,200 --> 02:03:06,720 BUT I THINK SOME OF -- YOU BROKE 3506 02:03:06,720 --> 02:03:07,280 UP A LITTLE. 3507 02:03:07,280 --> 02:03:09,120 >> I CAN REPEAT MYSELF IF YOU 3508 02:03:09,120 --> 02:03:09,640 NEED ME TO. 3509 02:03:09,640 --> 02:03:11,640 I JUST WANTED TO MAKE SURE THAT 3510 02:03:11,640 --> 02:03:13,760 THOSE PEOPLE THAT HAVE HIGH 3511 02:03:13,760 --> 02:03:16,320 SUPPORT NEEDS AND ARE IN, LIKE, 3512 02:03:16,320 --> 02:03:18,520 RESIDENTIAL FACILITIES OR 3513 02:03:18,520 --> 02:03:20,360 RESIDENTIAL SUPPORT PROGRAMS, 3514 02:03:20,360 --> 02:03:22,240 THAT THEY'RE BEING GIVEN THE 3515 02:03:22,240 --> 02:03:25,560 ACCESS TO THIS TOO, TO THIS 3516 02:03:25,560 --> 02:03:30,680 EDUCATION. 3517 02:03:30,680 --> 02:03:31,920 BECAUSE THERE IS SEXUAL ASSAULT 3518 02:03:31,920 --> 02:03:33,520 THAT HAPPENS IN THOSE PLACES AND 3519 02:03:33,520 --> 02:03:34,960 PEOPLE NOT BE GIVEN THE SUPPORT 3520 02:03:34,960 --> 02:03:38,120 TO BE ABLE TO EXPERIENCE THOSE 3521 02:03:38,120 --> 02:03:39,760 ADULT THINGS WHEN THEY'RE 3522 02:03:39,760 --> 02:03:41,200 ADULTS, THEY'RE BEING RESTRICTED 3523 02:03:41,200 --> 02:03:44,120 FROM THAT, AND THAT KIND OF 3524 02:03:44,120 --> 02:03:45,320 THING IS WHAT I'M CONCERNED 3525 02:03:45,320 --> 02:03:47,480 ABOUT, IS HOW DO WE MAKE SURE 3526 02:03:47,480 --> 02:03:50,840 THAT PEOPLE WITH THE HIGHEST 3527 02:03:50,840 --> 02:03:51,920 SUPPORT NEEDS, THAT NEED THE 3528 02:03:51,920 --> 02:03:53,320 MOST SUPPORTS, THEY'LL GET TO 3529 02:03:53,320 --> 02:03:54,520 ALSO HAVE ACCESS TO THIS 3530 02:03:54,520 --> 02:03:54,760 EDUCATION. 3531 02:03:54,760 --> 02:03:56,160 THANK YOU. 3532 02:03:56,160 --> 02:03:59,360 >> THANK YOU, IVANOVA. 3533 02:03:59,360 --> 02:04:02,960 NEXT WE'LL TAKE A COMMENT FROM 3534 02:04:02,960 --> 02:04:03,320 JENNY MAI PHAN. 3535 02:04:03,320 --> 02:04:05,000 >> HELLO, CAN YOU HEAR ME OKAY? 3536 02:04:05,000 --> 02:04:05,840 >> MM-HMM. 3537 02:04:05,840 --> 02:04:06,640 >> HI. 3538 02:04:06,640 --> 02:04:10,040 I WAS LOOKING THROUGH THE 3539 02:04:10,040 --> 02:04:14,160 CROSS-CUTTING OBJECTIVES DRAFT 3540 02:04:14,160 --> 02:04:15,280 CHAPTER, AND I WAS LOOKING FOR 3541 02:04:15,280 --> 02:04:17,480 ANY LANGUAGE ABOUT SEXUAL 3542 02:04:17,480 --> 02:04:19,560 REPRODUCTIVE HEALTH OUTCOMES. 3543 02:04:19,560 --> 02:04:20,760 BUT I WAS NOT SEEING THAT 3544 02:04:20,760 --> 02:04:22,400 ANYWHERE. 3545 02:04:22,400 --> 02:04:23,400 WOULD THAT BE SOMETHING THAT 3546 02:04:23,400 --> 02:04:26,040 COULD BE ADDED AS A TEXT WITHIN 3547 02:04:26,040 --> 02:04:26,920 THE CHAPTER? 3548 02:04:26,920 --> 02:04:29,400 >> YES. 3549 02:04:29,400 --> 02:04:31,160 YES, WE CAN INCLUDE SOMETHING ON 3550 02:04:31,160 --> 02:04:32,040 REPRODUCTIVE HEALTH IN THIS AREA 3551 02:04:32,040 --> 02:04:33,680 IF IT'S NOT ALREADY THERE. 3552 02:04:33,680 --> 02:04:34,760 >> THANK YOU. 3553 02:04:34,760 --> 02:04:37,520 >> ARE THERE ANY SPECIFIC POINTS 3554 02:04:37,520 --> 02:04:41,800 THAT YOU WERE INTERESTED IN? 3555 02:04:41,800 --> 02:04:46,040 >> THE PARAGRAPH THAT TALKS 3556 02:04:46,040 --> 02:04:47,800 ABOUT LOOKING AT GENDER AND SEX 3557 02:04:47,800 --> 02:04:49,840 AS A CROSS-CUTTING OBJECTIVE IN 3558 02:04:49,840 --> 02:04:51,840 A LOT OF THE AUTISM RESEARCH 3559 02:04:51,840 --> 02:04:57,520 FOCUSES MORE ON PHYSICAL HEALTH 3560 02:04:57,520 --> 02:05:00,880 OR GYNECOLOGICAL HEALTH BUT NOT 3561 02:05:00,880 --> 02:05:04,400 NECESSARILY ON REPRODUCTIVE OR 3562 02:05:04,400 --> 02:05:05,960 SEXUAL HEALTH, AND THIS KIND OF 3563 02:05:05,960 --> 02:05:07,800 TIES INTO EARLIER COMMENTS ABOUT 3564 02:05:07,800 --> 02:05:10,200 SEXUAL HEALTH EDUCATION TOO. 3565 02:05:10,200 --> 02:05:11,600 I JUST WANT TO MAKE SURE THAT 3566 02:05:11,600 --> 02:05:13,480 LANGUAGE IS INCLUDED IN THE 3567 02:05:13,480 --> 02:05:13,720 CHAPTER. 3568 02:05:13,720 --> 02:05:16,120 >> THANK YOU. 3569 02:05:16,120 --> 02:05:17,560 YES, WE WILL MAKE SURE WE ADD 3570 02:05:17,560 --> 02:05:18,520 SOME INFORMATION ABOUT THAT. 3571 02:05:18,520 --> 02:05:20,160 AND IF YOU HAVE ANYTHING IN 3572 02:05:20,160 --> 02:05:21,400 TERMS OF REFERENCES THAT WOULD 3573 02:05:21,400 --> 02:05:23,040 BE HELPFUL TO US, FEEL FREE TO 3574 02:05:23,040 --> 02:05:23,920 SEND THAT ALONG. 3575 02:05:23,920 --> 02:05:24,880 >> ABSOLUTELY. 3576 02:05:24,880 --> 02:05:25,160 I WILL. 3577 02:05:25,160 --> 02:05:25,880 THANK YOU. 3578 02:05:25,880 --> 02:05:28,880 >> THANK YOU. 3579 02:05:28,880 --> 02:05:31,880 DENA. 3580 02:05:31,880 --> 02:05:34,520 >> I'M SENDING YOU TWO AUTHORS 3581 02:05:34,520 --> 02:05:35,120 WHO'VE DONE A CONSIDERABLE 3582 02:05:35,120 --> 02:05:39,400 AMOUNT OF WORK ON GENDER, 3583 02:05:39,400 --> 02:05:40,840 NON-BINARY AND TRANS. 3584 02:05:40,840 --> 02:05:44,880 WE FOUND OUT THROUGH THEIR 3585 02:05:44,880 --> 02:05:46,960 RESEARCH THAT THE FREQUENCY IS 3586 02:05:46,960 --> 02:05:48,480 HIGHER IN THE FIELD OF AUTISM 3587 02:05:48,480 --> 02:05:50,440 FOR THOSE GENDER DIVERSITIES 3588 02:05:50,440 --> 02:05:52,640 THAN IN THE NON-DISABLED 3589 02:05:52,640 --> 02:05:54,200 COMMUNITY, AND THEY'VE TESTED 3590 02:05:54,200 --> 02:05:56,800 THAT BY EXAMINING POPULATIONS OF 3591 02:05:56,800 --> 02:05:58,880 TRANSGENDER PEOPLE FOR AUTISM, 3592 02:05:58,880 --> 02:06:00,640 AND EVALUATING AUTISTIC PEOPLE 3593 02:06:00,640 --> 02:06:03,360 FOR GENDER FLUIDITY, GENDER 3594 02:06:03,360 --> 02:06:04,320 DIVERSITY AND TRANSGENDER 3595 02:06:04,320 --> 02:06:04,920 STATUS. 3596 02:06:04,920 --> 02:06:06,320 SO I SENT YOU TWO AUTHORS THAT 3597 02:06:06,320 --> 02:06:08,320 HAVE DONE A LOT OF WORK ON THAT. 3598 02:06:08,320 --> 02:06:11,040 I WANT TO GO BACK TO 3599 02:06:11,040 --> 02:06:11,720 REPRODUCTIVE HEALTHCARE AND TALK 3600 02:06:11,720 --> 02:06:13,640 ABOUT THAT AGAIN AS ANOTHER 3601 02:06:13,640 --> 02:06:16,720 PLACE FOR WORKFORCE DEVELOPMENT 3602 02:06:16,720 --> 02:06:17,560 TRAINING. 3603 02:06:17,560 --> 02:06:19,560 YOU KNOW, PROVIDING REPRODUCTIVE 3604 02:06:19,560 --> 02:06:23,480 HEALTHCARE TO PEOPLE WHO HAVE 3605 02:06:23,480 --> 02:06:24,800 INORDINATELY HIGHER SENSORY 3606 02:06:24,800 --> 02:06:28,760 MANAGEMENT ISSUES, WHO MAY HAVE 3607 02:06:28,760 --> 02:06:30,720 INTEAR SEPTION ISSUES AND 3608 02:06:30,720 --> 02:06:31,600 DIFFICULTY REPORTING PAIN IN 3609 02:06:31,600 --> 02:06:35,640 TERMS OF INTENSITY, KIND, 3610 02:06:35,640 --> 02:06:37,280 LOCATION, FREQUENCY, ALL OF 3611 02:06:37,280 --> 02:06:38,480 THOSE ARE DIFFICULTIES FOR 3612 02:06:38,480 --> 02:06:41,240 PEOPLE ON THE AUTISM SPECTRUM, 3613 02:06:41,240 --> 02:06:42,200 AND AGAIN, NOT HAVING A 3614 02:06:42,200 --> 02:06:45,720 WORKFORCE THAT'S EQUIPPED TO 3615 02:06:45,720 --> 02:06:47,920 ADDRESS THAT CAN BE VERY 3616 02:06:47,920 --> 02:06:54,680 PROBLEMATIC FOR OUR GROUP. 3617 02:06:54,680 --> 02:06:55,880 THERE WAS ONE OTHER THING. 3618 02:06:55,880 --> 02:06:56,440 MENOPAUSE. 3619 02:06:56,440 --> 02:06:57,720 I HOPE WHEN WE'RE TALKING ABOUT 3620 02:06:57,720 --> 02:07:00,240 THE LIFESPAN AND OLDER WOMEN, WE 3621 02:07:00,240 --> 02:07:02,000 GET A LOT OF INFORMATION AS 3622 02:07:02,000 --> 02:07:04,000 WOMEN, WE'VE TALKED A LOT ABOUT 3623 02:07:04,000 --> 02:07:06,360 THIS IN THE NODE I'M WORKING 3624 02:07:06,360 --> 02:07:08,040 WITH AARP, WE GET ALL THIS 3625 02:07:08,040 --> 02:07:10,080 INFORMATION ABOUT WHAT TO EXPECT 3626 02:07:10,080 --> 02:07:11,200 TRANSITIONING INTO PUBERTY, BUT 3627 02:07:11,200 --> 02:07:14,720 THAT'S WHERE OUR REPRODUCTIVE 3628 02:07:14,720 --> 02:07:15,600 HEALTHCARE EDUCATION TENDS TO 3629 02:07:15,600 --> 02:07:16,880 STOP. 3630 02:07:16,880 --> 02:07:18,440 WE ASSUME THAT WOMEN WILL FIGURE 3631 02:07:18,440 --> 02:07:19,880 IT OUT FROM OTHER PEOPLE, THAT 3632 02:07:19,880 --> 02:07:21,280 THEY SOCIALIZE WITH. 3633 02:07:21,280 --> 02:07:25,200 WE HAVE LIMITED SOCIAL NETWORKS. 3634 02:07:25,200 --> 02:07:26,840 SO WE'RE REALLY IN A VOID THERE. 3635 02:07:26,840 --> 02:07:30,000 AND THEN LASTLY, THE 3636 02:07:30,000 --> 02:07:31,360 IMPLICATIONS OF LATE DIAGNOSES 3637 02:07:31,360 --> 02:07:35,800 OR MISDIAGNOSES AS IT APPLIES TO 3638 02:07:35,800 --> 02:07:40,400 SEXUAL VULNERABILITY. 3639 02:07:40,400 --> 02:07:41,960 SO TO GIVE YOU A REAL LIFE 3640 02:07:41,960 --> 02:07:43,480 EXAMPLE, MY SON WAS DIAGNOSED AT 3641 02:07:43,480 --> 02:07:43,640 3. 3642 02:07:43,640 --> 02:07:44,800 WE KNEW THAT BECAUSE OF HIS 3643 02:07:44,800 --> 02:07:46,680 AUTISM, THERE WERE CERTAIN 3644 02:07:46,680 --> 02:07:47,680 FACTORS WE HAD TO CONSIDER. 3645 02:07:47,680 --> 02:07:50,600 WE PROVIDED HIM WITH VERY 3646 02:07:50,600 --> 02:07:54,960 INTENSE, VERY STRUCTURED 3647 02:07:54,960 --> 02:07:56,960 INFORMATION ON SEXUALITY, ON 3648 02:07:56,960 --> 02:08:00,000 RELATIONSHIPS, ON TOUCH, ON 3649 02:08:00,000 --> 02:08:00,800 CONSENT. 3650 02:08:00,800 --> 02:08:02,200 PRIMARILY BECAUSE WE UNDERSTOOD 3651 02:08:02,200 --> 02:08:04,920 THAT HE NEEDED A DIFFERENT KIND 3652 02:08:04,920 --> 02:08:08,440 OF INTENSIVE AND INTENTIONAL 3653 02:08:08,440 --> 02:08:09,120 INSTRUCTION. 3654 02:08:09,120 --> 02:08:10,600 THAT LOOKED QUITE DIFFERENTLY 3655 02:08:10,600 --> 02:08:12,160 FOR SOMEONE LIKE ME, WHO WASN'T 3656 02:08:12,160 --> 02:08:14,880 DIAGNOSED UNTIL 40, RIGHT, WHO 3657 02:08:14,880 --> 02:08:17,840 IS PRESUMED BY THE FAMILY 3658 02:08:17,840 --> 02:08:19,720 SYSTEM, PRESUMED BY MY SOCIAL 3659 02:08:19,720 --> 02:08:23,520 NETWORKS, PRESUMED BY EVEN 3660 02:08:23,520 --> 02:08:25,080 MYSELF THAT I KNOW ENOUGH TO GET 3661 02:08:25,080 --> 02:08:25,360 BY. 3662 02:08:25,360 --> 02:08:26,800 AND IT LED TO A TREMENDOUS 3663 02:08:26,800 --> 02:08:28,880 AMOUNT OF VICTIMIZATION, 3664 02:08:28,880 --> 02:08:29,760 REPEATED VICTIMIZATION. 3665 02:08:29,760 --> 02:08:31,600 SO I THINK THAT THE 3666 02:08:31,600 --> 02:08:33,040 INTERSECTIONALITY OF LATE 3667 02:08:33,040 --> 02:08:35,440 DIAGNOSES AND INHERENTLY 3668 02:08:35,440 --> 02:08:36,480 DIFFERENT KINDS OF VULNERABILITY 3669 02:08:36,480 --> 02:08:37,760 IS SOMETHING THAT NEEDS TO BE 3670 02:08:37,760 --> 02:08:41,800 ADDRESSED. 3671 02:08:41,800 --> 02:08:42,320 >> THANK YOU. 3672 02:08:42,320 --> 02:08:43,520 SO WE'LL TAKE NOTE OF THAT. 3673 02:08:43,520 --> 02:08:46,480 THANK YOU FOR SHARING THAT. 3674 02:08:46,480 --> 02:08:51,080 NEXT, SCOTT ROBERTSON. 3675 02:08:51,080 --> 02:08:52,280 >> THANKS, SUSAN. 3676 02:08:52,280 --> 02:08:55,040 I JUST WANTED TO CONCUR WITH THE 3677 02:08:55,040 --> 02:08:58,640 EMPHASIS ON SEXUAL -- EDUCATION 3678 02:08:58,640 --> 02:09:01,160 ON SEXUALITY AND SEXUAL 3679 02:09:01,160 --> 02:09:03,880 EDUCATION AS FAR AS LIKE EQUAL 3680 02:09:03,880 --> 02:09:05,600 ACCESS, THAT I THINK FOLKS OFTEN 3681 02:09:05,600 --> 02:09:08,400 DON'T HAVE ACCESS BECAUSE OF THE 3682 02:09:08,400 --> 02:09:11,000 FACT OF STEREOTYPES AND 3683 02:09:11,000 --> 02:09:12,960 MISBELIEFS AND BASICALLY OFTEN 3684 02:09:12,960 --> 02:09:17,320 SOMETIMES TREATING AUTISTIC KIDS 3685 02:09:17,320 --> 02:09:20,120 AND ADOLESCENTS LIKE THEIR THEYE 3686 02:09:20,120 --> 02:09:22,760 YOUNGER CHILDREN. 3687 02:09:22,760 --> 02:09:25,280 YOU SEE THAT IN SOME OF THE 3688 02:09:25,280 --> 02:09:26,360 LITERATURE THAT TALKED ABOUT THE 3689 02:09:26,360 --> 02:09:28,240 PROBLEM THERE WITH TREATING 3690 02:09:28,240 --> 02:09:29,440 AUTISTIC PEOPLE WHO IN SOME 3691 02:09:29,440 --> 02:09:31,640 CASES MAY NEED EXTENSIVE ARRAY 3692 02:09:31,640 --> 02:09:34,240 OF CERTAIN SUPPORTS FOR LIVING, 3693 02:09:34,240 --> 02:09:36,880 BUT ARE ADOLESCENTS OR ARE 3694 02:09:36,880 --> 02:09:38,320 ADULTS, AND SHOULD HAVE THAT 3695 02:09:38,320 --> 02:09:43,360 EQUAL ACCESS TO EDUCATION ABOUT 3696 02:09:43,360 --> 02:09:44,200 SEXUALITY AND WHAT THAT MEANS 3697 02:09:44,200 --> 02:09:45,720 ACROSS THE LIFESPAN, AND I THINK 3698 02:09:45,720 --> 02:09:47,080 THAT THAT CROSS-CONNECTS WITH 3699 02:09:47,080 --> 02:09:50,080 SOME OF THESE OTHER BIASES THAT 3700 02:09:50,080 --> 02:09:51,120 WERE RAISED EARLIER AS FAR AS, 3701 02:09:51,120 --> 02:09:54,560 YOU KNOW, HAVING KIDS RAISING A 3702 02:09:54,560 --> 02:09:55,560 FAMILY, BEING ABLE TO BECOME A 3703 02:09:55,560 --> 02:09:57,000 PARENT, GETTING MARRIED, I MEAN, 3704 02:09:57,000 --> 02:09:58,560 ALL THAT IS CROSS-CONNECTED 3705 02:09:58,560 --> 02:10:01,920 TOGETHER IN TERMS OF ON LIFESPAN 3706 02:10:01,920 --> 02:10:03,640 AREAS FOR AUTISTIC PEOPLE, THAT 3707 02:10:03,640 --> 02:10:08,480 A LOT OF THAT IS BIASES IN THE 3708 02:10:08,480 --> 02:10:09,760 SYSTEM WHERE HISTORICALLY PEOPLE 3709 02:10:09,760 --> 02:10:12,560 ARE NOT TREATING AUTISTIC PEOPLE 3710 02:10:12,560 --> 02:10:13,840 RESPECTFULLY AS HUMAN BEINGS WHO 3711 02:10:13,840 --> 02:10:15,160 SHOULD BE ABLE TO HAVE THE SAME 3712 02:10:15,160 --> 02:10:16,360 ACCESS TO INFORMATION AND 3713 02:10:16,360 --> 02:10:17,640 KNOWLEDGE IN THAT SPACE WITH 3714 02:10:17,640 --> 02:10:18,240 SUPPORTS, RIGHT? 3715 02:10:18,240 --> 02:10:20,360 LIKE THE SUPPORTS MAY NEED TO BE 3716 02:10:20,360 --> 02:10:21,720 DIFFERENT, MORE TARGETED, 3717 02:10:21,720 --> 02:10:23,240 FOCUSED IN SOME WAYS TO HELP 3718 02:10:23,240 --> 02:10:24,880 FOLKS HAVE EQUAL ACCESS ON THAT, 3719 02:10:24,880 --> 02:10:27,920 BUT I THINK FOLKS SHOULD NOT BE, 3720 02:10:27,920 --> 02:10:30,680 BECAUSE OF THEIR SERVICE AND 3721 02:10:30,680 --> 02:10:31,920 ACCESS NEEDS, THAT SHOULD NOT BE 3722 02:10:31,920 --> 02:10:33,640 A REASON FOR DENYING FOLKS 3723 02:10:33,640 --> 02:10:35,920 ACCESS TO EDUCATION AND 3724 02:10:35,920 --> 02:10:37,240 SEXUALITY AS THEY GREW UP JUST 3725 02:10:37,240 --> 02:10:39,400 LIKE OTHER NON-AUTISTIC KIDS AND 3726 02:10:39,400 --> 02:10:40,320 ADOLESCENTS AND ADULTS HAVE 3727 02:10:40,320 --> 02:10:42,200 ACCESS TO THAT INFORMATION, 3728 02:10:42,200 --> 02:10:43,680 KNOWLEDGE AND RESOURCES. 3729 02:10:43,680 --> 02:10:45,120 I THINK ALSO, TOO, AND I THINK 3730 02:10:45,120 --> 02:10:47,000 WE'VE TOUCHED UPON THIS A LITTLE 3731 02:10:47,000 --> 02:10:51,320 BIT, BUT THE LGBTQIA+ FOCUS ON 3732 02:10:51,320 --> 02:10:53,560 HERE TO EXPAND A LITTLE ON THE 3733 02:10:53,560 --> 02:10:54,640 GREATER NEEDS FOR THAT IN 3734 02:10:54,640 --> 02:10:56,160 RESEARCH THAT WE HAVE SO MANY 3735 02:10:56,160 --> 02:11:00,560 GAPS WITH INCLUSION OF LGBTQIA+ 3736 02:11:00,560 --> 02:11:03,080 FOLKS IN RESEARCH SAMPLES, OFTEN 3737 02:11:03,080 --> 02:11:05,120 VERY FREQUENTLY AUTISM 3738 02:11:05,120 --> 02:11:06,320 RESEARCHERS ARE NOT EVEN 3739 02:11:06,320 --> 02:11:08,520 COLLECTING DATA ON GENDER 3740 02:11:08,520 --> 02:11:12,240 IDENTITY AND SEX WALL SEXUAL ORN 3741 02:11:12,240 --> 02:11:12,920 IN STUDIES. 3742 02:11:12,920 --> 02:11:14,000 I'VE NOTICED THAT MYSELF 3743 02:11:14,000 --> 02:11:15,200 SOMETIMES WHEN I'VE LOOKED AT 3744 02:11:15,200 --> 02:11:16,280 LITERATURE, IT'S JUST OFTEN NOT 3745 02:11:16,280 --> 02:11:17,280 COLLECTED AT ALL, AND THERE'S 3746 02:11:17,280 --> 02:11:19,440 NOT AN EMPHASIS ON INCLUSION OF 3747 02:11:19,440 --> 02:11:22,200 FOLKS IN STUDIES AND ALSO 3748 02:11:22,200 --> 02:11:26,160 EMPHASIS ON HOW -- FOLKS WHO 3749 02:11:26,160 --> 02:11:28,560 IDENTIFY AS LGBTQIA+ CAN 3750 02:11:28,560 --> 02:11:30,720 PARTICIPATE AS RESEARCHERS IN 3751 02:11:30,720 --> 02:11:31,920 THIS SPACE AND OTHER SPACES OF 3752 02:11:31,920 --> 02:11:32,280 AUTISM RESEARCH. 3753 02:11:32,280 --> 02:11:34,320 SO I THINK WE HAVE A WAYS TO GO 3754 02:11:34,320 --> 02:11:38,400 TO MAKE SOME PROGRESS IN THAT 3755 02:11:38,400 --> 02:11:39,800 AREA, AND AS WAS MENTIONED 3756 02:11:39,800 --> 02:11:40,800 EARLIER, IT DOES MENTION HERE 3757 02:11:40,800 --> 02:11:43,720 THAT THE RATE OF LGBTQIA+ IS 3758 02:11:43,720 --> 02:11:45,280 HIGHER AMONG AUTISTIC PEOPLE. 3759 02:11:45,280 --> 02:11:47,480 A LOT OF THAT IS THE RATE OF 3760 02:11:47,480 --> 02:11:48,440 TRANSGENDER AS WAS MENTIONED 3761 02:11:48,440 --> 02:11:49,960 EARLIER, AND I CAN SEND YOU SOME 3762 02:11:49,960 --> 02:11:51,600 RESEARCH STUDIES ALSO ON THAT, 3763 02:11:51,600 --> 02:11:52,720 WHERE THEY HAVE CONFIRMED THAT 3764 02:11:52,720 --> 02:11:54,920 HIGH RATE, AS HIGH AS 3765 02:11:54,920 --> 02:11:57,640 POTENTIALLY 10%, MAYBE HIGHER, 3766 02:11:57,640 --> 02:11:58,960 AMONG AUTISTIC PEOPLE WHO ARE 3767 02:11:58,960 --> 02:12:02,360 FOLKS WHO IDENTIFY AS 3768 02:12:02,360 --> 02:12:03,640 TRANSGENDER, AND I AGREE ALSO 3769 02:12:03,640 --> 02:12:04,960 WITH WHAT WAS MENTIONED EARLIER 3770 02:12:04,960 --> 02:12:07,680 ABOUT NON-BINARY TOO, IS MAKING 3771 02:12:07,680 --> 02:12:09,120 SURE GENDER FLUIDITY IS ON HERE 3772 02:12:09,120 --> 02:12:11,880 AND THE MEDICAL CARE FOR 3773 02:12:11,880 --> 02:12:13,840 AUTISTIC PEOPLE WHO ARE LGBTQIA+ 3774 02:12:13,840 --> 02:12:18,200 AND OTHER FOLKS AS FAR AS THAT 3775 02:12:18,200 --> 02:12:20,360 THEY NEED FOR HAVING THEIR NEEDS 3776 02:12:20,360 --> 02:12:21,600 MET INCLUDING FOR -- I DON'T 3777 02:12:21,600 --> 02:12:22,920 KNOW WHETHER IT'S IN HERE OR 3778 02:12:22,920 --> 02:12:23,840 OTHERWISE, BUT LIKE FOR 3779 02:12:23,840 --> 02:12:26,400 INSTANCE, IF FOLKS MAY NEED TO 3780 02:12:26,400 --> 02:12:27,920 TRANSITION BETWEEN GENDERS AS 3781 02:12:27,920 --> 02:12:30,200 FAR AS THE MEDICAL CARE OR 3782 02:12:30,200 --> 02:12:32,040 SURGERIES, ET CETERA, THAT ARE 3783 02:12:32,040 --> 02:12:33,560 NEEDED FOR THAT, THAT AUTISTIC 3784 02:12:33,560 --> 02:12:35,160 PEOPLE HAVE EQUAL ACCESS IN THAT 3785 02:12:35,160 --> 02:12:37,120 SPACE, I THINK IS PARAMOUNT. 3786 02:12:37,120 --> 02:12:38,680 AND I DON'T THINK THAT'S BEEN 3787 02:12:38,680 --> 02:12:40,080 CITED AT ALL, REALLY, IN 3788 02:12:40,080 --> 02:12:41,080 RESEARCH LITERATURE. 3789 02:12:41,080 --> 02:12:42,680 >> THANK YOU, SCOTT. 3790 02:12:42,680 --> 02:12:45,000 THOSE ARE HELPFUL COMMENTS. 3791 02:12:45,000 --> 02:12:46,960 WHEN PEOPLE ARE TALKING ABOUT 3792 02:12:46,960 --> 02:12:48,520 SEX EDUCATION, ARE YOU 3793 02:12:48,520 --> 02:12:49,480 ENVISIONING THAT COMING THROUGH 3794 02:12:49,480 --> 02:12:51,440 THE EDUCATIONAL SYSTEM, THROUGH 3795 02:12:51,440 --> 02:12:53,440 HEALTHCARE PROVIDERS, OR THROUGH 3796 02:12:53,440 --> 02:12:55,360 TOOL KITS THAT ARE PUT OUT BY 3797 02:12:55,360 --> 02:12:57,680 ADVOCACY ORGANIZATIONS OR -- I 3798 02:12:57,680 --> 02:12:59,320 WAS JUST CURIOUS ABOUT WHETHER 3799 02:12:59,320 --> 02:13:00,640 ANYONE ON THE COMMITTEE HAS A 3800 02:13:00,640 --> 02:13:02,160 THOUGHT ABOUT WHERE WOULD BE A 3801 02:13:02,160 --> 02:13:06,120 GOOD SOURCE FOR THAT 3802 02:13:06,120 --> 02:13:06,560 INFORMATION. 3803 02:13:06,560 --> 02:13:08,400 NOT TO SPECIFY BUT JUST TO KNOW 3804 02:13:08,400 --> 02:13:09,000 WHAT PEOPLE ARE THINKING. 3805 02:13:09,000 --> 02:13:11,040 >> I JUST MEANT ON MY END FOR 3806 02:13:11,040 --> 02:13:12,320 ALL SYSTEMS AS FAR AS EDUCATION 3807 02:13:12,320 --> 02:13:13,880 AND HEALTHCARE AND OTHER 3808 02:13:13,880 --> 02:13:15,640 ASPECTS, IT SHOULD BE INCLUDED 3809 02:13:15,640 --> 02:13:16,480 WHERE -- ESPECIALLY WHERE IT'S 3810 02:13:16,480 --> 02:13:18,360 INCLUDED ALREADY FOR 3811 02:13:18,360 --> 02:13:20,440 NON-AUTISTIC PEOPLE, BUT I'LL 3812 02:13:20,440 --> 02:13:21,960 DEFER TO THE OTHER FOLKS ON THE 3813 02:13:21,960 --> 02:13:32,480 COMMITTEE FOR THEIR THOUGHTS. 3814 02:13:33,080 --> 02:13:34,560 >> SO WE DON'T HAVE TO BE VERY 3815 02:13:34,560 --> 02:13:35,840 SPECIFIC ON THAT IN THE PLAN. 3816 02:13:35,840 --> 02:13:36,960 I WAS JUST CURIOUS ABOUT WHAT 3817 02:13:36,960 --> 02:13:37,400 PEOPLE THOUGHT. 3818 02:13:37,400 --> 02:13:38,760 AND WE DO SOMETIMES SEE 3819 02:13:38,760 --> 02:13:39,680 ORGANIZATIONS COME UP WITH TOOL 3820 02:13:39,680 --> 02:13:41,000 KITS THAT PEOPLE CAN USE, BUT 3821 02:13:41,000 --> 02:13:45,040 THERE MAY BE OPPORTUNITIES IN 3822 02:13:45,040 --> 02:13:45,640 ESTABLISHED SYSTEMS THAT ARE 3823 02:13:45,640 --> 02:13:49,200 ALREADY, LIKE YOU SAID, SCOTT, 3824 02:13:49,200 --> 02:13:50,080 PROVIDING INFORMATION ON 3825 02:13:50,080 --> 02:13:54,120 SEXUALITY THAT COULD PERHAPS 3826 02:13:54,120 --> 02:13:58,160 UPDATE THEIR OFFERINGS. 3827 02:13:58,160 --> 02:13:59,360 SO WE'RE GOING TO MOVE RIGHT 3828 02:13:59,360 --> 02:14:00,360 INTO EQUITY AND DISPARITIES TO 3829 02:14:00,360 --> 02:14:02,880 MAKE SURE THAT WE HAVE ENOUGH 3830 02:14:02,880 --> 02:14:04,840 TIME TO TALK ABOUT THAT, AND 3831 02:14:04,840 --> 02:14:06,080 AGAIN, A LOT OF THESE OVERLAP 3832 02:14:06,080 --> 02:14:07,840 WITH EACH OTHER, AND SO THERE IS 3833 02:14:07,840 --> 02:14:10,760 SOME OVERLAP WITH SEX AND GENDER 3834 02:14:10,760 --> 02:14:11,080 HERE. 3835 02:14:11,080 --> 02:14:12,960 BUT WE HAVE A NEW CROSS-CUTTING 3836 02:14:12,960 --> 02:14:14,160 THEME THAT THE COMMITTEE WANTED 3837 02:14:14,160 --> 02:14:15,800 TO ADD TO THE PLAN ON EQUITY AND 3838 02:14:15,800 --> 02:14:17,360 DISPARITIES. 3839 02:14:17,360 --> 02:14:18,960 AND THIS WOULD INCLUDE RACIAL 3840 02:14:18,960 --> 02:14:21,680 AND ETHNIC, GEOGRAPHIC, AND 3841 02:14:21,680 --> 02:14:22,600 SOCIOECONOMIC DISPARITIES AS 3842 02:14:22,600 --> 02:14:27,520 WELL AS SEX AND GENDER AND OTHER 3843 02:14:27,520 --> 02:14:29,320 TYPES OF DISPARITIES, AND ALSO 3844 02:14:29,320 --> 02:14:30,520 RECOGNIZING DISABILITY AS A 3845 02:14:30,520 --> 02:14:33,280 DISPARITY GROUP AND AUTISM WB 3846 02:14:33,280 --> 02:14:37,960 THATWITHIN THAT AS A SUBSECTIOND 3847 02:14:37,960 --> 02:14:38,640 INTERSECTIONALITY BETWEEN AUTISM 3848 02:14:38,640 --> 02:14:42,680 AND ALL OF THESE OTHER AREAS 3849 02:14:42,680 --> 02:14:44,120 THAT CREATE DISPARITIES. 3850 02:14:44,120 --> 02:14:46,200 IN ADDITION, CULTURALLY 3851 02:14:46,200 --> 02:14:48,040 COMPETENT AND SENSITIVE 3852 02:14:48,040 --> 02:14:51,000 INTERVENTIONS AND SERVICES AND 3853 02:14:51,000 --> 02:14:52,440 PROVIDERS, DISPARITIES IN AGE OF 3854 02:14:52,440 --> 02:14:53,640 DIAGNOSIS AND ACCESS TO SERVICES 3855 02:14:53,640 --> 02:14:56,280 AND SUPPORTS. 3856 02:14:56,280 --> 02:14:57,680 BALANCED AND REPRESENTATIVE 3857 02:14:57,680 --> 02:15:00,320 RESEARCH SAMPLES. 3858 02:15:00,320 --> 02:15:02,040 REPRESENTATION WITHIN THE 3859 02:15:02,040 --> 02:15:03,040 WORKFORCE. 3860 02:15:03,040 --> 02:15:05,560 AND INCLUSION, ACCESSIBILITY, 3861 02:15:05,560 --> 02:15:06,760 ACCOMMODATIONS AND UNIVERSAL 3862 02:15:06,760 --> 02:15:09,720 DESIGN ARE SOME OF THE THINGS 3863 02:15:09,720 --> 02:15:10,760 THAT POTENTIALLY CAN BE INCLUDED 3864 02:15:10,760 --> 02:15:13,320 IN THIS CHAPTER AND IN THE 3865 02:15:13,320 --> 02:15:14,960 DRAFT, MAYBE -- LIKE UNIVERSAL 3866 02:15:14,960 --> 02:15:15,800 DESIGN, I DON'T THINK IS 3867 02:15:15,800 --> 02:15:16,800 MENTIONED BUT I THINK IT SHOULD 3868 02:15:16,800 --> 02:15:18,200 BE MENTIONED IN THIS SECTION, 3869 02:15:18,200 --> 02:15:20,520 AND WE CAN EXPAND A LITTLE BIT 3870 02:15:20,520 --> 02:15:22,480 ON ACCESSIBILITY AS A THEME, BUT 3871 02:15:22,480 --> 02:15:24,560 I'D LIKE TO HEAR FROM YOU ABOUT 3872 02:15:24,560 --> 02:15:25,800 ANY OTHER IMPORTANT TOPICS OR 3873 02:15:25,800 --> 02:15:27,080 POINTS THAT WE MIGHT WANT TO 3874 02:15:27,080 --> 02:15:28,960 INCLUDE IN THIS SECTION, AND 3875 02:15:28,960 --> 02:15:30,680 WHAT ARE SOME OF THE RECENT 3876 02:15:30,680 --> 02:15:31,040 CHANGES. 3877 02:15:31,040 --> 02:15:32,120 AND OBVIOUSLY FOR THOSE OF US 3878 02:15:32,120 --> 02:15:33,120 WHO WORK IN THE FEDERAL 3879 02:15:33,120 --> 02:15:33,920 GOVERNMENT, THERE HAVE BEEN A 3880 02:15:33,920 --> 02:15:36,400 LOT OF MAJOR CHANGES IN THE PAST 3881 02:15:36,400 --> 02:15:39,160 YEAR OR TWO IN THIS AREA, AND 3882 02:15:39,160 --> 02:15:42,080 EVERY FEDERAL AGENCY IS WORKING 3883 02:15:42,080 --> 02:15:44,160 ON DIVERSITY, EQUITY, INCLUSION 3884 02:15:44,160 --> 02:15:45,480 AND ACCESSIBILITY ISSUES WITHIN 3885 02:15:45,480 --> 02:15:46,680 OUR AGENCIES AND WITHIN 3886 02:15:46,680 --> 02:15:48,000 PROGRAMMING FROM OUR AGENCIES, 3887 02:15:48,000 --> 02:15:49,720 AND THERE'S A LOT GOING ON WITH 3888 02:15:49,720 --> 02:15:52,120 PRIVATE ORGANIZATIONS AS WELL. 3889 02:15:52,120 --> 02:15:53,440 BUT WOULD LOVE TO HEAR SOME OF 3890 02:15:53,440 --> 02:15:54,880 YOUR THOUGHTS ABOUT THIS AND HOW 3891 02:15:54,880 --> 02:15:58,400 WE CAN MAKE THIS NEW SECTION 3892 02:15:58,400 --> 02:15:59,800 INCLUSIVE OF EVERYTHING THAT THE 3893 02:15:59,800 --> 02:16:00,480 COMMITTEE MIGHT WANT TO 3894 02:16:00,480 --> 02:16:10,640 RECOMMEND. 3895 02:16:11,120 --> 02:16:11,240 DENA? 3896 02:16:11,240 --> 02:16:14,000 >> I KNOW THESE EVENTS IN THE 3897 02:16:14,000 --> 02:16:16,840 LAST DAY AND TODAY WERE 3898 02:16:16,840 --> 02:16:17,840 OPTIONAL, AND AS A RESULT, I 3899 02:16:17,840 --> 02:16:19,400 THINK SOME OF OUR USUAL 3900 02:16:19,400 --> 02:16:23,000 PARTICIPANTS MAY NOT BE HERE, SO 3901 02:16:23,000 --> 02:16:27,160 I WOULD RECOMMEND THATTHERE'S A 3902 02:16:27,160 --> 02:16:30,640 COUPLE PEOPLE WHO HAVE 3903 02:16:30,640 --> 02:16:31,880 INORDINATELY DEEP KNOWLEDGE AND 3904 02:16:31,880 --> 02:16:32,920 LIVED EXPERIENCE AROUND RACIAL 3905 02:16:32,920 --> 02:16:36,560 AND ETHNIC DISPARITIES THAT WE 3906 02:16:36,560 --> 02:16:37,880 MIGHT WANT TO SCHEDULE A 3907 02:16:37,880 --> 02:16:38,760 SEPARATE CALL WITH JUST TO PICK 3908 02:16:38,760 --> 02:16:41,160 THEIR BRAIN A LITTLE BIT. 3909 02:16:41,160 --> 02:16:43,120 IN TERMS OF DISPARITIES, I AGAIN 3910 02:16:43,120 --> 02:16:46,640 WANT TO BRING UP IQ. 3911 02:16:46,640 --> 02:16:48,960 AS IN AND OF ITSELF A FACTOR 3912 02:16:48,960 --> 02:16:52,520 THAT CREATES DISPARITY. 3913 02:16:52,520 --> 02:16:54,000 EITHER YOUR IQ IS TOO HIGH AND 3914 02:16:54,000 --> 02:16:55,600 AS A RESULT, YOU'RE NOT DEEMED 3915 02:16:55,600 --> 02:16:59,520 WORTHY OF SERVICES. 3916 02:16:59,520 --> 02:17:01,520 YOU KNOW, IF YOUR IQ IS HIGH, 3917 02:17:01,520 --> 02:17:05,000 THEY WANT YOU TO SETTLE FOR LESS 3918 02:17:05,000 --> 02:17:07,480 CHALLENGING WORK IN ORDER TO GET 3919 02:17:07,480 --> 02:17:09,360 ACCOMMODATED AND INSTEAD OF 3920 02:17:09,360 --> 02:17:10,560 SUPPORTING YOU AT WORKING AT 3921 02:17:10,560 --> 02:17:11,000 YOUR POTENTIAL. 3922 02:17:11,000 --> 02:17:13,200 IF YOUR IQ IS TOO LOW, YOU'RE 3923 02:17:13,200 --> 02:17:14,640 DEEMED INELIGIBLE FOR SOME 3924 02:17:14,640 --> 02:17:18,560 RESEARCH AND SOME OPPORTUNITIES 3925 02:17:18,560 --> 02:17:19,360 FOR INDEPENDENT LIVING. 3926 02:17:19,360 --> 02:17:23,480 SO I THINK USING INTELLECTUAL 3927 02:17:23,480 --> 02:17:25,920 QUOTIENT THAT'S NOT EVEN 3928 02:17:25,920 --> 02:17:27,760 DESIGNED TO MEASURE INTELLIGENCE 3929 02:17:27,760 --> 02:17:29,520 IN THIS POPULATION CREATES IN 3930 02:17:29,520 --> 02:17:32,120 AND OF ITSELF MULTIPLE 3931 02:17:32,120 --> 02:17:34,000 DISPARITIES THAT INTERFERE WITH 3932 02:17:34,000 --> 02:17:34,960 SERVICE DELIVERY AND 3933 02:17:34,960 --> 02:17:37,920 ACCESSIBILITY. 3934 02:17:37,920 --> 02:17:41,080 >> THANK YOU FOR THOSE COMMENTS. 3935 02:17:41,080 --> 02:17:42,280 DEFINITELY HELPFUL, AND WE HAVE 3936 02:17:42,280 --> 02:17:43,720 BEEN HEARING ABOUT SOME OF THOSE 3937 02:17:43,720 --> 02:17:46,320 KINDS OF ISSUES AND CAN TRY TO 3938 02:17:46,320 --> 02:17:47,320 MAKE A MENTION OF THAT IN THE 3939 02:17:47,320 --> 02:17:51,160 PLAN. 3940 02:17:51,160 --> 02:17:52,000 JENNY MAI PHAN. 3941 02:17:52,000 --> 02:17:53,560 >> HI, SUSAN. 3942 02:17:53,560 --> 02:17:58,040 I THINK IT'S ALSO NECESSARY TO 3943 02:17:58,040 --> 02:17:59,680 PERHAPS ADD IN LANGUAGE IN THE 3944 02:17:59,680 --> 02:18:02,760 CHAPTER ABOUT DISAGGREGATING 3945 02:18:02,760 --> 02:18:04,600 RACIAL DATA, BECAUSE THERE ARE 3946 02:18:04,600 --> 02:18:08,760 SOME RACIAL GROUPS THAT 3947 02:18:08,760 --> 02:18:10,520 REPRESENT MULTIPLE COUNTRIES AS 3948 02:18:10,520 --> 02:18:12,880 COUNTRIES OF ORIGIN, LANGUAGES, 3949 02:18:12,880 --> 02:18:16,080 AND VARIOUS BACKGROUNDS. 3950 02:18:16,080 --> 02:18:18,840 AND THIS IS INTERSECTIONALITY 3951 02:18:18,840 --> 02:18:19,280 ASIDE. 3952 02:18:19,280 --> 02:18:21,120 IT'S JUST THE PEOPLE WHO LIVE 3953 02:18:21,120 --> 02:18:24,840 HERE IN THE U.S. WHO MAY 3954 02:18:24,840 --> 02:18:30,640 IDENTIFY AS, FOR EXAMPLE, ASIAN, 3955 02:18:30,640 --> 02:18:35,200 BUT ETHNICALLY REPRESENTING ONE 3956 02:18:35,200 --> 02:18:36,920 COUNTRY OF ORIGIN AND DOES NOT 3957 02:18:36,920 --> 02:18:37,840 REALLY RELATE TO EXPERIENCES 3958 02:18:37,840 --> 02:18:39,440 RELATED TO A DIFFERENT ASIAN 3959 02:18:39,440 --> 02:18:42,840 COUNTRY. 3960 02:18:42,840 --> 02:18:44,360 SO IN ORDER TO HELP ENSURE THAT 3961 02:18:44,360 --> 02:18:46,320 EVERYONE IN OUR COMMUNITY ARE 3962 02:18:46,320 --> 02:18:49,600 GETTING ACCESS TO CARE AND 3963 02:18:49,600 --> 02:18:52,120 SERVICES AND SUPPORTS, IT IS 3964 02:18:52,120 --> 02:18:54,400 IMPORTANT TO INCREASE 3965 02:18:54,400 --> 02:18:58,240 REPRESENTATION OF HISTORICALLY 3966 02:18:58,240 --> 02:18:59,360 UNDERREPRESENTED RACIAL ETHNIC 3967 02:18:59,360 --> 02:19:01,320 GROUPS BY DISAGGREGATING DATA. 3968 02:19:01,320 --> 02:19:04,040 >> THANK YOU. 3969 02:19:04,040 --> 02:19:06,680 FOR THOSE, YOU KNOW, 3970 02:19:06,680 --> 02:19:07,760 CLARIFICATIONS AND SOME FINER 3971 02:19:07,760 --> 02:19:09,160 POINTS ABOUT THAT. 3972 02:19:09,160 --> 02:19:10,720 WE CAN TRY TO MAKE A MENTION OF 3973 02:19:10,720 --> 02:19:12,360 LANGUAGE AND IF YOU HAVE ANY 3974 02:19:12,360 --> 02:19:14,440 REFERENCES THAT YOU WANT TO SEND 3975 02:19:14,440 --> 02:19:18,800 TO US, FEEL FREE TO SEND THAT TO 3976 02:19:18,800 --> 02:19:19,280 IACC TEAM. 3977 02:19:19,280 --> 02:19:20,000 >> I DO AND I WILL. 3978 02:19:20,000 --> 02:19:20,440 THANK YOU. 3979 02:19:20,440 --> 02:19:21,200 >> THANK YOU. 3980 02:19:21,200 --> 02:19:31,520 JENNIFER JOHNSON. 3981 02:19:32,360 --> 02:19:33,920 >> IT TAKES ME A MOMENT TO GET 3982 02:19:33,920 --> 02:19:35,000 MYSELF OFF OF MUTE HERE. 3983 02:19:35,000 --> 02:19:35,960 SO ONE OF THE THINGS -- I'M NOT 3984 02:19:35,960 --> 02:19:40,120 SURE IF THE STRATEGIC PLAN 3985 02:19:40,120 --> 02:19:42,080 INCORPORATES ANYTHING RELATED TO 3986 02:19:42,080 --> 02:19:45,840 HOW DIFFERENT CULTURES MIGHT 3987 02:19:45,840 --> 02:19:47,360 VIEW AUTISM, WITHIN THEIR 3988 02:19:47,360 --> 02:19:48,640 CULTURE AND WHETHER THEY WOULD 3989 02:19:48,640 --> 02:19:50,960 RECOGNIZE IT AS A DISABILITY OR 3990 02:19:50,960 --> 02:19:52,400 WHETHER THEY RECOGNIZE 3991 02:19:52,400 --> 02:19:54,560 DISABILITIES AT ALL, AND HOW 3992 02:19:54,560 --> 02:19:56,880 THAT INTERPLAYS WITH, YOU KNOW, 3993 02:19:56,880 --> 02:20:02,200 SERVICES AND SUPPORTS AND ALSO 3994 02:20:02,200 --> 02:20:02,600 SERVICE DELIVERY. 3995 02:20:02,600 --> 02:20:04,080 SO AGAIN, I'M NOT SURE IF THAT'S 3996 02:20:04,080 --> 02:20:05,840 ALREADY IN THE PLAN, BUT IF NOT, 3997 02:20:05,840 --> 02:20:07,480 I THINK THAT'S IMPORTANT TO MAKE 3998 02:20:07,480 --> 02:20:10,760 SURE IT'S INCLUDED. 3999 02:20:10,760 --> 02:20:11,560 >> THANK YOU. 4000 02:20:11,560 --> 02:20:13,480 AND IF YOU HAVE ANY REFERENCES, 4001 02:20:13,480 --> 02:20:15,360 I CAN THINK OF ONE THAT I JUST 4002 02:20:15,360 --> 02:20:17,320 SAW WITHIN THE LAST WEEK, BUT IF 4003 02:20:17,320 --> 02:20:18,520 YOU HAVE ANY REFERENCES ABOUT 4004 02:20:18,520 --> 02:20:21,640 THAT, THAT WOULD BE HELPFUL. 4005 02:20:21,640 --> 02:20:22,680 >> OKAY. 4006 02:20:22,680 --> 02:20:24,560 >> THANK YOU. 4007 02:20:24,560 --> 02:20:30,480 SCOTT? 4008 02:20:30,480 --> 02:20:33,520 >> THANKS, SUSAN. 4009 02:20:33,520 --> 02:20:35,600 I THINK THERE'S A FEW 4010 02:20:35,600 --> 02:20:36,800 SUGGESTIONS THAT I HAD IN HERE, 4011 02:20:36,800 --> 02:20:38,120 AND I CAN SEND YOU SOME 4012 02:20:38,120 --> 02:20:39,000 LITERATURE TOO. 4013 02:20:39,000 --> 02:20:40,560 I KNOW I DEFINITELY HAVE SOME 4014 02:20:40,560 --> 02:20:41,360 LITERATURE ON DISPARITIES THAT 4015 02:20:41,360 --> 02:20:44,400 YOU MAY BE ABLE TO CITE ON HERE 4016 02:20:44,400 --> 02:20:46,800 AS FAR AS AGE OF DIAGNOSIS, ET 4017 02:20:46,800 --> 02:20:48,000 CETERA, AND CULTURALLY 4018 02:20:48,000 --> 02:20:48,280 COMPETENT. 4019 02:20:48,280 --> 02:20:50,600 I WOULD ADD IN ADDITION TO 4020 02:20:50,600 --> 02:20:52,360 CULTURALLY COMPETENT, 4021 02:20:52,360 --> 02:20:53,360 LINGUISTICALLY COMPETENT TOO, AS 4022 02:20:53,360 --> 02:20:56,840 FAR AS BARRIERS THAT MAYBE 4023 02:20:56,840 --> 02:20:59,120 AUTISTIC FOLKS EXPERIENCE THAT 4024 02:20:59,120 --> 02:21:00,880 MAY SPEAK SPANISH OR OTHER 4025 02:21:00,880 --> 02:21:01,760 LANGUAGES HERE IN THE UNITED 4026 02:21:01,760 --> 02:21:04,920 STATES BECAUSE NOT EVERYBODY, 4027 02:21:04,920 --> 02:21:06,280 EVEN BEYOND DISABILITY, HAS 4028 02:21:06,280 --> 02:21:07,360 ENGLISH AS THEIR FST LANGUAGE 4029 02:21:07,360 --> 02:21:08,960 HE IN THE UNITED STATES, AND 4030 02:21:08,960 --> 02:21:10,720 THAT'S ONE OF THE BIASES WE 4031 02:21:10,720 --> 02:21:12,920 SOMETIMES HAVE HAD HISTORICALLY. 4032 02:21:12,920 --> 02:21:14,640 I WANTED TO CALL OUT THE 4033 02:21:14,640 --> 02:21:16,600 EMPHASIS HERE ON SOCIOECONOMIC 4034 02:21:16,600 --> 02:21:18,920 DISPARITIES THAT'S MENTIONED 4035 02:21:18,920 --> 02:21:19,360 HERE. 4036 02:21:19,360 --> 02:21:22,640 THE RESEARCH LITERATURE FOR 4037 02:21:22,640 --> 02:21:23,800 INSTANCE ON COMMUNITY LIVING HAS 4038 02:21:23,800 --> 02:21:27,040 NOT COLLECTED DATA GENERALLY ON 4039 02:21:27,040 --> 02:21:31,240 ECONOMIC PROSPERITY AND INCOME 4040 02:21:31,240 --> 02:21:33,680 AND WAGE AND SALARIES AMONG 4041 02:21:33,680 --> 02:21:34,240 AUTISTIC PEOPLE. 4042 02:21:34,240 --> 02:21:35,320 SO WE DON'T BE EVEN KNOW WHAT 4043 02:21:35,320 --> 02:21:37,720 THAT GAP LOOKS LIKE, YET ALONE 4044 02:21:37,720 --> 02:21:39,560 WHAT THAT GAP LOOKS LIKE FOR 4045 02:21:39,560 --> 02:21:41,120 SUBGROUPS AMONG AUTISTIC PEOPLE 4046 02:21:41,120 --> 02:21:42,880 AS FAR AS AUTISTIC PEOPLE FROM 4047 02:21:42,880 --> 02:21:45,960 DIVERSE RACE, ETHNICITIES, 4048 02:21:45,960 --> 02:21:47,960 GENDER, SEXUAL ORIENTATION, ET 4049 02:21:47,960 --> 02:21:48,440 CETERA. 4050 02:21:48,440 --> 02:21:50,320 SO WE NEED MORE DATA ON THAT. 4051 02:21:50,320 --> 02:21:53,600 THAT SHOULD BE -- I'D EMPHASIZE 4052 02:21:53,600 --> 02:21:55,800 IT SHOULD BE REQUIRED ON THERE, 4053 02:21:55,800 --> 02:21:57,400 IS ESPECIALLY WITH FEDERALLY 4054 02:21:57,400 --> 02:21:58,600 FUNDED RESEARCH, WE SHOULD HAVE 4055 02:21:58,600 --> 02:22:00,160 MORE REQUIREMENTS, I THINK, 4056 02:22:00,160 --> 02:22:02,880 WHERE POSSIBLE TO BE COLLECTING 4057 02:22:02,880 --> 02:22:04,520 DATA ON -- IF YOU'RE DOING AN 4058 02:22:04,520 --> 02:22:06,080 EMPLOYMENT STUDY, YOU SHOULD BE 4059 02:22:06,080 --> 02:22:07,040 COLLECTING DATA ON ECONOMIC 4060 02:22:07,040 --> 02:22:07,280 STATUS. 4061 02:22:07,280 --> 02:22:09,880 AND YOU SHOULD BE HAVING DIVERSE 4062 02:22:09,880 --> 02:22:14,280 SAMPLES TOO WHERE POSSIBLE TO 4063 02:22:14,280 --> 02:22:15,800 HAVE DIVERSITY OF AUTISTIC 4064 02:22:15,800 --> 02:22:16,760 PEOPLE FROM DIFFERENT 4065 02:22:16,760 --> 02:22:17,320 BACKGROUNDS. 4066 02:22:17,320 --> 02:22:18,520 NOW I KNOW THAT'S EASIER SAID 4067 02:22:18,520 --> 02:22:20,560 THAN DONE, BECAUSE I'M AWARE AS 4068 02:22:20,560 --> 02:22:22,680 A RESEARCHER BY TRAINING IN MY 4069 02:22:22,680 --> 02:22:24,640 OWN BACKGROUND THAT ESPECIALLY 4070 02:22:24,640 --> 02:22:26,520 WITH AUTISM, WITH RESEARCH 4071 02:22:26,520 --> 02:22:27,960 PARTICULARLY AROUND ADULTS AND 4072 02:22:27,960 --> 02:22:30,120 ADOLESCENTS, IT'S REALLY HARD 4073 02:22:30,120 --> 02:22:33,200 SOMETIMES TO CONNECT WITH FOLKS 4074 02:22:33,200 --> 02:22:34,560 AND TO ACHIEVE DIVERSE SAMPLES, 4075 02:22:34,560 --> 02:22:35,880 BUT I THINK WE NEED TO MAKE 4076 02:22:35,880 --> 02:22:37,440 STRONGER EFFORTS IN THAT SPACE. 4077 02:22:37,440 --> 02:22:38,760 RESEARCHERS NEED TO HAVE THAT 4078 02:22:38,760 --> 02:22:42,480 PRIORITY, I THINK FROM THE PLAN 4079 02:22:42,480 --> 02:22:44,320 HERE, THAT'S OF UTMOST 4080 02:22:44,320 --> 02:22:47,080 IMPORTANCE TO WHERE POSSIBLE 4081 02:22:47,080 --> 02:22:49,040 HAVING AS DIVER SIEVE SAMPLE AS 4082 02:22:49,040 --> 02:22:50,320 POSSIBLE, AND MAYBE OVERSAMPLE 4083 02:22:50,320 --> 02:22:52,120 AS TIMES, AS WAS MENTIONED 4084 02:22:52,120 --> 02:22:56,360 EARLIER, I THINK, SOMETIMES 4085 02:22:56,360 --> 02:22:57,360 OVERSAMPLE FOLKS INTENTIONALLY 4086 02:22:57,360 --> 02:22:59,560 JUST TO MAKE SURE YOU HAVE THAT 4087 02:22:59,560 --> 02:23:01,400 FULLY REPRESENTED BECAUSE IT'S 4088 02:23:01,400 --> 02:23:03,800 BEEN SO UNDERREPRESENTED IN THE 4089 02:23:03,800 --> 02:23:05,360 AUTISM RESEARCH LITERATURE 4090 02:23:05,360 --> 02:23:06,440 OVERALL BECAUSE IT TENDS TO 4091 02:23:06,440 --> 02:23:09,720 BE -- I HATE TO SAY IT BUT I'M 4092 02:23:09,720 --> 02:23:11,440 REFLECTIVE OF THE STEREOTYPE OUT 4093 02:23:11,440 --> 02:23:14,640 THERE, WHITE MALE IS EMBODIED IN 4094 02:23:14,640 --> 02:23:16,920 AUTISM RESEARCH, AUTISM PRACTICE 4095 02:23:16,920 --> 02:23:19,320 AND POLICIES KIND OF AT TIMES, 4096 02:23:19,320 --> 02:23:21,120 IT SO HEAVILY SLANTED AND BIASED 4097 02:23:21,120 --> 02:23:23,520 AND DOES NOT LOOK EXTENSIVELY AT 4098 02:23:23,520 --> 02:23:24,120 THAT INTERSECTION PIECE. 4099 02:23:24,120 --> 02:23:26,960 I WOULD ADD IN GEOGRAPHY TOO, 4100 02:23:26,960 --> 02:23:28,200 URBAN, RURAL TYPE OF THING, THAT 4101 02:23:28,200 --> 02:23:29,840 OFTEN STUDIES HAVE NOT ASKED 4102 02:23:29,840 --> 02:23:30,480 ABOUT GEOGRAPHY. 4103 02:23:30,480 --> 02:23:33,120 AND THEN I CAN SEND YOU, IF YOU 4104 02:23:33,120 --> 02:23:34,840 WANT, CITATIONS FOR THINGS LIKE 4105 02:23:34,840 --> 02:23:35,520 UNIVERSAL DESIGN. 4106 02:23:35,520 --> 02:23:37,680 I'M GLAD YOU HAVE THAT FOCUS ON 4107 02:23:37,680 --> 02:23:39,040 HERE FOR EMPOWERMENT OF ACCESS. 4108 02:23:39,040 --> 02:23:41,000 AND THEN ON THE -- DID YOU 4109 02:23:41,000 --> 02:23:42,320 MENTIONED ONE OF THE EXECUTIVE 4110 02:23:42,320 --> 02:23:44,840 ORDERS IN THE DESCRIPTION THERE. 4111 02:23:44,840 --> 02:23:47,000 I THINK IT WOULD BE HELPFUL TO 4112 02:23:47,000 --> 02:23:48,000 MENTION JUST BRIEFLY, EVEN IF 4113 02:23:48,000 --> 02:23:49,960 IT'S JUST THE CITATIONS FOR THEM 4114 02:23:49,960 --> 02:23:50,960 AND A FEW OF THE OTHER EXECUTIVE 4115 02:23:50,960 --> 02:23:54,120 ORDERS AND THE POLICY INCLUDING 4116 02:23:54,120 --> 02:23:55,440 DIA IN THE FEDERAL WORKFORCE 4117 02:23:55,440 --> 02:23:57,720 WHERE IT SPELLS OUT THE 4118 02:23:57,720 --> 02:23:59,080 ABBREVIATION DIA IN THAT 4119 02:23:59,080 --> 02:24:00,360 EXECUTIVE ORDER, AND I THINK THE 4120 02:24:00,360 --> 02:24:02,880 PRIORITY OF FOLKS UNDERSTANDING 4121 02:24:02,880 --> 02:24:04,160 DISABILITY FROM THE 4122 02:24:04,160 --> 02:24:06,600 ACCESSIBILITY STANDPOINT, AND 4123 02:24:06,600 --> 02:24:08,880 THEN THE INTERSECTIONALITY PIECE 4124 02:24:08,880 --> 02:24:11,280 TOO, IT PART OF DIVERSITY, AND 4125 02:24:11,280 --> 02:24:13,680 AUTISTIC FOLKS JUST LIKE OTHER 4126 02:24:13,680 --> 02:24:15,560 FOLKS COME FROM THESE OTHER 4127 02:24:15,560 --> 02:24:17,200 DIVERSE BACKGROUNDS TOO, I THINK 4128 02:24:17,200 --> 02:24:18,520 SOMETHING -- THIS EXTRA EMPHASIS 4129 02:24:18,520 --> 02:24:20,600 HERE IS REALLY NEEDED, AND I 4130 02:24:20,600 --> 02:24:21,880 WOULD SAY I KNOW THIS IS NOT 4131 02:24:21,880 --> 02:24:24,080 UNIQUE TO AUTISM, BUT THAT 4132 02:24:24,080 --> 02:24:25,640 ACCESSIBILITY PIECE OF DEIA THAT 4133 02:24:25,640 --> 02:24:28,920 WE HAVE IN DIVERSITY, EQUITY, 4134 02:24:28,920 --> 02:24:34,000 INCLUSION, AND ACCESSIBILITY IN 4135 02:24:34,000 --> 02:24:35,760 THE GOVERNMENT IS NOT MAKING ITS 4136 02:24:35,760 --> 02:24:36,880 WAY OUTSIDE OF THE GOVERNMENT. 4137 02:24:36,880 --> 02:24:38,640 EVEN SOMETIMES NOT TO OUR SISTER 4138 02:24:38,640 --> 02:24:39,200 AGENCIES. 4139 02:24:39,200 --> 02:24:40,800 I KNOW THAT'S NOT UNIQUE TO 4140 02:24:40,800 --> 02:24:42,680 AUTISM, BUT WE NEED TO MAKE MORE 4141 02:24:42,680 --> 02:24:43,360 HEADWAY THAT. 4142 02:24:43,360 --> 02:24:44,640 BECAUSE A LOT OF FOLKS DON'T 4143 02:24:44,640 --> 02:24:46,040 KNOW WHAT THE A IS AND THEY 4144 02:24:46,040 --> 02:24:48,240 DON'T KNOW WHAT ACCESSIBILITY IS 4145 02:24:48,240 --> 02:24:49,440 AT THE BARE MINIMUM LEVEL. 4146 02:24:49,440 --> 02:24:52,440 AND IT'S HARD TO IMAGINE FOR 4147 02:24:52,440 --> 02:24:53,400 AUTISM SPECIFICALLY WITH THE 4148 02:24:53,400 --> 02:24:54,280 BARRIERS WE HAVE ACROSS THE 4149 02:24:54,280 --> 02:24:56,400 BOARD ON THAT FOCUS FOR DIA, BUT 4150 02:24:56,400 --> 02:24:57,880 I'M GLAD YOU HAVE A START BY 4151 02:24:57,880 --> 02:25:00,320 HAVING THE CITATION FOR THE 4152 02:25:00,320 --> 02:25:01,800 RACIAL EQUITY AND UNDERSERVED 4153 02:25:01,800 --> 02:25:04,440 COMMUNITIES AS ONE OF THE 4154 02:25:04,440 --> 02:25:06,640 EXECUTIVE ORDERS CITED HERE. 4155 02:25:06,640 --> 02:25:09,040 AND THEN I'LL THROW IT BACK TO 4156 02:25:09,040 --> 02:25:10,720 OTHERS, IT'S OF UTMOST 4157 02:25:10,720 --> 02:25:12,640 IMPORTANCE TO US AS FEDERAL 4158 02:25:12,640 --> 02:25:13,520 AGENCIES RIGHT NOW IN THE LAST 4159 02:25:13,520 --> 02:25:15,720 COUPLE YEARS AS WE'VE HEAVILY 4160 02:25:15,720 --> 02:25:16,680 EXPANDED OUR FOCUS. 4161 02:25:16,680 --> 02:25:18,800 IT'S ONE OF THE TOP -- I'D SAY 4162 02:25:18,800 --> 02:25:19,440 TWO OR THREE PRIORITIES. 4163 02:25:19,440 --> 02:25:22,480 I KNOW FOR US HERE AT DOL, IS 4164 02:25:22,480 --> 02:25:23,920 THAT DIVERSITY, EQUITY, 4165 02:25:23,920 --> 02:25:24,800 INCLUSION, ACCESSIBILITY PIECE. 4166 02:25:24,800 --> 02:25:26,560 SO I THINK ANYTHING WE CAN DO TO 4167 02:25:26,560 --> 02:25:27,720 STRENGTHEN THE LANGUAGE ON THAT, 4168 02:25:27,720 --> 02:25:29,920 AND TO MAKE SURE THAT IT 4169 02:25:29,920 --> 02:25:33,000 PERCOLATES INTO RESEARCH 4170 02:25:33,000 --> 02:25:34,520 PRACTICES AND POLICY AND THAT IT 4171 02:25:34,520 --> 02:25:35,520 SHOULD BEING INFLUENCING 4172 02:25:35,520 --> 02:25:36,920 EVERYTHING THAT WE DO IN THAT 4173 02:25:36,920 --> 02:25:38,120 SPACE, INCLUDING WHEN WE TALK 4174 02:25:38,120 --> 02:25:42,320 ABOUT WORKFORCES, THAT SHOULD 4175 02:25:42,320 --> 02:25:43,800 MAKE SURE NOT ONLY THAT AUTISTIC 4176 02:25:43,800 --> 02:25:47,080 PEOPLE ARE ABLE TO PARTICIPATE 4177 02:25:47,080 --> 02:25:48,760 IN SOME OF THESE WORKFORCE NEEDS 4178 02:25:48,760 --> 02:25:50,400 WE'VE BEEN TALKING ABOUT, ABOUT 4179 02:25:50,400 --> 02:25:53,360 A SERVICE PROVISION AS 4180 02:25:53,360 --> 02:25:55,520 RESEARCHER, BUT DIVERSE YO AUTIC 4181 02:25:55,520 --> 02:25:57,480 PEOPLE WHO COME FROM DIVERSITY 4182 02:25:57,480 --> 02:26:00,000 OF THE RACE, GENDER, GENDER 4183 02:26:00,000 --> 02:26:01,760 IDENTITY, SEXUAL ORIENTATION, 4184 02:26:01,760 --> 02:26:03,960 SOCIOECONOMIC STATUS. 4185 02:26:03,960 --> 02:26:07,440 >> CERTAINLY THOSE ARE REALLY 4186 02:26:07,440 --> 02:26:08,080 IMPORTANT. 4187 02:26:08,080 --> 02:26:09,360 AND WITH ACCESSIBILITY, YOU'RE 4188 02:26:09,360 --> 02:26:12,040 CORRECT THAT A LOT OF PEOPLE, IT 4189 02:26:12,040 --> 02:26:13,800 SORT OF DROPS OFF THE END OR I 4190 02:26:13,800 --> 02:26:17,520 FIND THAT WITH ACCESSIBILITY, 4191 02:26:17,520 --> 02:26:18,600 THAT SOMETIMES PEOPLE ARE ONLY 4192 02:26:18,600 --> 02:26:20,600 THINKING ABOUT PHYSICAL 4193 02:26:20,600 --> 02:26:21,560 DISABILITIES, BLINDNESS OR 4194 02:26:21,560 --> 02:26:23,200 DEAFNESS AND THEY ARE NOT 4195 02:26:23,200 --> 02:26:24,600 THINKING ABOUT THE BROADER RANGE 4196 02:26:24,600 --> 02:26:25,720 OF DISABILITIES. 4197 02:26:25,720 --> 02:26:27,040 SO THAT IS REALLY IMPORTANT. 4198 02:26:27,040 --> 02:26:30,760 AND WE DO HAVE NEURODIVERSE 4199 02:26:30,760 --> 02:26:32,040 FEDERAL WORKFORCE INITIATIVES 4200 02:26:32,040 --> 02:26:33,600 GOING ON IN THE GOVERNMENT AS 4201 02:26:33,600 --> 02:26:35,760 WELL THAT COULD BE MENTIONED, 4202 02:26:35,760 --> 02:26:37,880 AND THE EXECUTIVE ORDER, YOU 4203 02:26:37,880 --> 02:26:38,840 MENTIONED AS WELL SO THAT COULD 4204 02:26:38,840 --> 02:26:40,040 BE BUILT OUT A LITTLE BIT MORE. 4205 02:26:40,040 --> 02:26:42,000 BUT WE ALSO WILL TRY TO -- I 4206 02:26:42,000 --> 02:26:43,200 DON'T KNOW IF THIS IS IN THERE 4207 02:26:43,200 --> 02:26:46,720 ALREADY OR NOT, BUT THERE'S AN 4208 02:26:46,720 --> 02:26:49,120 INTENTION TO MENTION THAT 4209 02:26:49,120 --> 02:26:50,200 SOMETHING NEW THAT HAS COME 4210 02:26:50,200 --> 02:26:51,760 ALONG SINCE THE LAST STRATEGIC 4211 02:26:51,760 --> 02:26:54,680 PLAN IS THAT THERE'S MORE FOCUS 4212 02:26:54,680 --> 02:26:56,000 ON NEURODIVERSITY AND THERE ARE 4213 02:26:56,000 --> 02:26:57,840 MANY CONFERENCES, ET CETERA, 4214 02:26:57,840 --> 02:26:59,080 THAT ARE HAPPENING ON THIS TOPIC 4215 02:26:59,080 --> 02:27:00,040 AND BRINGING PEOPLE TOGETHER TO 4216 02:27:00,040 --> 02:27:02,360 TALK ABOUT THIS IN A BROADER 4217 02:27:02,360 --> 02:27:02,920 CONTEXT. 4218 02:27:02,920 --> 02:27:05,760 SO THANK YOU FOR THAT COMMENT. 4219 02:27:05,760 --> 02:27:08,280 SAM CRANE. 4220 02:27:08,280 --> 02:27:12,720 >> I WANT TO QUICKLY TALK ABOUT 4221 02:27:12,720 --> 02:27:15,480 BIAS IN ADDITION TO -- AND OF 4222 02:27:15,480 --> 02:27:16,320 COURSE ACCESS BUT I THINK THAT 4223 02:27:16,320 --> 02:27:18,640 WE'VE TALKED ABOUT ACCESS, BUT 4224 02:27:18,640 --> 02:27:25,120 BIAS CAN BE A BIG BARRIER TO 4225 02:27:25,120 --> 02:27:26,200 DIAGNOSIS AND IT'S NOT JUST -- I 4226 02:27:26,200 --> 02:27:27,720 THINK IT'S NOT JUST ABOUT 4227 02:27:27,720 --> 02:27:30,440 CULTURAL COMPETENCE. 4228 02:27:30,440 --> 02:27:36,200 ONE VERY COMMON EXAMPLE IS THAT 4229 02:27:36,200 --> 02:27:37,120 AFRICAN AMERICAN PEOPLE, 4230 02:27:37,120 --> 02:27:38,800 ESPECIALLY CHILDREN, ARE 4231 02:27:38,800 --> 02:27:40,440 DIFFERENTIALLY DIAGNOSED USUALLY 4232 02:27:40,440 --> 02:27:45,240 AS HAVING EITHER A STANDALONE 4233 02:27:45,240 --> 02:27:50,120 I.D. OR EMOTIONAL DISTURBANCE OR 4234 02:27:50,120 --> 02:27:52,000 OPPOSITIONAL DEFYING DISORDER, 4235 02:27:52,000 --> 02:27:53,960 WHICH OFTEN CAN BE A BARRIER TO 4236 02:27:53,960 --> 02:27:55,760 CARE, SO THESE ARE KIDS WHO ARE 4237 02:27:55,760 --> 02:28:01,000 GETTING AN EVALUATION, AND THE 4238 02:28:01,000 --> 02:28:03,480 EVALUATOR MIGHT BELIEVE THEY ARE 4239 02:28:03,480 --> 02:28:08,200 CULTURALLY COMPETENT, BUT THEY 4240 02:28:08,200 --> 02:28:10,600 ARE OFTEN VIEWING BEHAVIOR IN 4241 02:28:10,600 --> 02:28:14,320 THROUGH A LENS THAT IS RACIALLY 4242 02:28:14,320 --> 02:28:18,280 BIASED, AND TENDS TO ATTRIBUTE 4243 02:28:18,280 --> 02:28:20,320 BEHAVIOR TO, FOR EXAMPLE, 4244 02:28:20,320 --> 02:28:24,520 INTENTIONAL MISCONDUCT RATHER 4245 02:28:24,520 --> 02:28:27,680 THAN AUTISM OR ATTRIBUTE 4246 02:28:27,680 --> 02:28:29,520 DIFFICULTIES TO LOWER IQ RATHER 4247 02:28:29,520 --> 02:28:31,280 THAN AUTISM. 4248 02:28:31,280 --> 02:28:34,240 ANOTHER EXAMPLE THAT I'VE SEEN 4249 02:28:34,240 --> 02:28:39,920 IS THAT SOMETIMES PEOPLE WILL 4250 02:28:39,920 --> 02:28:40,960 GET CULTURAL COMPETENCY TRAINING 4251 02:28:40,960 --> 02:28:42,640 IN A WAY THAT ACTUALLY INCREASES 4252 02:28:42,640 --> 02:28:43,000 BIAS. 4253 02:28:43,000 --> 02:28:45,280 SO I'VE SEEN SITUATIONS WHERE 4254 02:28:45,280 --> 02:28:48,880 ASIAN CHILDREN HAVE BEEN 4255 02:28:48,880 --> 02:28:50,440 DISMISSED BECAUSE EVEN IF THE 4256 02:28:50,440 --> 02:28:53,920 PARENT WHO IS ALSO ASIAN 4257 02:28:53,920 --> 02:28:56,000 MENTIONS THAT THEY'VE NOTICED 4258 02:28:56,000 --> 02:28:57,960 DIFFERENCES IN EYE CONTACT IN 4259 02:28:57,960 --> 02:28:59,680 SOCIAL ENGAGEMENT, THE EVALUATOR 4260 02:28:59,680 --> 02:29:01,360 WILL SAY, WELL, I'VE LEARNED 4261 02:29:01,360 --> 02:29:02,440 THAT ASIAN CULTURES ARE LESS 4262 02:29:02,440 --> 02:29:04,320 LIKELY TO MAKE EYE CONTACT. 4263 02:29:04,320 --> 02:29:09,880 AND ARE LESS LIKELY TO 4264 02:29:09,880 --> 02:29:10,560 SPONTANEOUSLY INTERACT WITH 4265 02:29:10,560 --> 02:29:11,840 ADULTS AND IT'S NORMAL AND THIS 4266 02:29:11,840 --> 02:29:13,400 IS ALL COMPLETELY FINE AND, 4267 02:29:13,400 --> 02:29:15,360 THEREFORE, WE'RE NOT GOING TO 4268 02:29:15,360 --> 02:29:17,680 RECOGNIZE THIS CHILD AS YO 4269 02:29:17,680 --> 02:29:19,080 AUTISTIC, EVEN WHEN THE PARENTS 4270 02:29:19,080 --> 02:29:20,160 THEMSELVES ARE SAYING THIS IS 4271 02:29:20,160 --> 02:29:22,360 NOT ACTUALLY NORMAL FOR OUR 4272 02:29:22,360 --> 02:29:25,080 CULTURE AND THIS KID HAS 4273 02:29:25,080 --> 02:29:26,000 SIBLINGS WHO ARE COMPLETELY 4274 02:29:26,000 --> 02:29:26,640 DIFFERENT. 4275 02:29:26,640 --> 02:29:29,120 SO YOU KNOW, I THINK WE NEED TO 4276 02:29:29,120 --> 02:29:30,520 SPECIFICALLY CALL OUT BIAS IN 4277 02:29:30,520 --> 02:29:36,360 ADDITION TO CULTURAL COMPETENCY. 4278 02:29:36,360 --> 02:29:37,000 >> THANK YOU. 4279 02:29:37,000 --> 02:29:37,760 THAT'S HELPFUL. 4280 02:29:37,760 --> 02:29:39,000 AND IF YOU HAVE ANY RECENT 4281 02:29:39,000 --> 02:29:40,000 REFERENCES ON THAT, WE WERE 4282 02:29:40,000 --> 02:29:41,720 LOOKING UP A FEW REFERENCES BUT 4283 02:29:41,720 --> 02:29:43,600 THERE WERE SOME OLDER ONES, BUT 4284 02:29:43,600 --> 02:29:45,120 IF YOU HAVE ANYTHING A BIT 4285 02:29:45,120 --> 02:29:45,760 NEWER, THAT WOULD BE GREAT. 4286 02:29:45,760 --> 02:29:51,040 >> AND FORTUNATELY A LOT OF 4287 02:29:51,040 --> 02:29:52,760 THESE CASES CAME TO ME AS LEGAL 4288 02:29:52,760 --> 02:29:53,880 REFERRALS SO I CAN'T MUHAMMAD 4289 02:29:53,880 --> 02:29:58,520 NAAEMMUHAMMADNAAEMNAME NAMESOR . 4290 02:29:58,520 --> 02:29:59,520 >> NOT A PROBLEM. 4291 02:29:59,520 --> 02:30:02,160 JUST IF YOU HAVE, SAY, JOURNAL 4292 02:30:02,160 --> 02:30:03,600 ARTICLES BUT IT'S DEFINITELY AN 4293 02:30:03,600 --> 02:30:07,560 IMPORTANT ISSUE, SO THANK YOU. 4294 02:30:07,560 --> 02:30:08,760 SO I'M GOING TO GO TO STEVEN. 4295 02:30:08,760 --> 02:30:09,800 DO YOU HAVE SOME WRITTEN 4296 02:30:09,800 --> 02:30:10,400 COMMENTS? 4297 02:30:10,400 --> 02:30:11,360 >> HI THERE. 4298 02:30:11,360 --> 02:30:13,120 YES, I HAVE ONE COMMENT FROM 4299 02:30:13,120 --> 02:30:14,400 YETTA MYRICK. 4300 02:30:14,400 --> 02:30:16,480 QUESTION IS, IS THERE ANYTHING 4301 02:30:16,480 --> 02:30:20,440 ABOUT UTILIZING CULTURAL BROKERS 4302 02:30:20,440 --> 02:30:22,640 AND/OR COMMUNITY LIAISONS? 4303 02:30:22,640 --> 02:30:25,400 ANYTHING ABOUT HOW TO ENGAGE 4304 02:30:25,400 --> 02:30:26,080 THESE COMMUNITIES? 4305 02:30:26,080 --> 02:30:30,000 THIS IS KEY INFORMATION TO 4306 02:30:30,000 --> 02:30:31,840 INCLUDE, AND YETTA ALSO 4307 02:30:31,840 --> 02:30:33,400 CONCURRED THAT BIAS IS A HUGE 4308 02:30:33,400 --> 02:30:33,920 ISSUE. 4309 02:30:33,920 --> 02:30:35,240 >> GREAT. 4310 02:30:35,240 --> 02:30:35,920 THAT'S HELPFUL. 4311 02:30:35,920 --> 02:30:37,000 WE DON'T HAVE ANYTHING ABOUT 4312 02:30:37,000 --> 02:30:39,440 THAT RIGHT NOW, BUT AGAIN, IF 4313 02:30:39,440 --> 02:30:40,320 YOU HAVE ANY REFERENCES, YOU 4314 02:30:40,320 --> 02:30:42,120 MIGHT BE ABLE TO SEND US, 4315 02:30:42,120 --> 02:30:43,320 WHETHER IT'S A WEBSITE OR A 4316 02:30:43,320 --> 02:30:45,960 JOURNAL ARTICLE, THAT WOULD BE 4317 02:30:45,960 --> 02:30:47,160 HELPFUL, OR EVEN AT THIS POINT 4318 02:30:47,160 --> 02:30:48,920 IF THERE'S NOT A LOT IN 4319 02:30:48,920 --> 02:30:49,960 JOURNALS, IF THERE'S ANYTHING 4320 02:30:49,960 --> 02:30:51,080 POPULAR THAT WE CAN REFER TO 4321 02:30:51,080 --> 02:30:52,520 JUST TO UNDERSTAND A LITTLE BIT 4322 02:30:52,520 --> 02:30:53,560 MORE OF THAT BACKGROUND, IT 4323 02:30:53,560 --> 02:30:56,600 WOULD BE HELPFUL. 4324 02:30:56,600 --> 02:30:58,440 >> OKAY, I CAN DO THAT. 4325 02:30:58,440 --> 02:30:59,520 THANKS, SUE SAFNLT SORRY I'M NOT 4326 02:30:59,520 --> 02:31:00,200 ABLE TO BE ON. 4327 02:31:00,200 --> 02:31:01,360 >> NO PROBLEM. 4328 02:31:01,360 --> 02:31:06,440 IVANOVA? 4329 02:31:06,440 --> 02:31:07,920 >> THIS IS IVANOVA. 4330 02:31:07,920 --> 02:31:09,040 MY QUESTION IS, IS THERE 4331 02:31:09,040 --> 02:31:11,000 ANYTHING TO ADDRESS THE 4332 02:31:11,000 --> 02:31:21,600 DISPARITIES FO FOR ADOPTEES, 4333 02:31:22,240 --> 02:31:27,440 ADOPTED CHILDREN, TRANSITIONAL 4334 02:31:27,440 --> 02:31:30,360 ADOPTEE, GETTING EDUCATION TO 4335 02:31:30,360 --> 02:31:31,440 ADOPTIVE AGENCY SO THAT 4336 02:31:31,440 --> 02:31:32,680 RESOURCES CAN BE GIVEN TO 4337 02:31:32,680 --> 02:31:35,840 FAMILIES THAT HAVE AUTISTIC -- 4338 02:31:35,840 --> 02:31:38,040 THAT ARE ADOPTING AUTISTIC KIDS, 4339 02:31:38,040 --> 02:31:39,080 AND THEY MAY NEED SUPPORT. 4340 02:31:39,080 --> 02:31:40,120 THANK YOU. 4341 02:31:40,120 --> 02:31:41,400 >> THANK YOU. 4342 02:31:41,400 --> 02:31:42,720 AND I KNOW THAT WE DON'T HAVE 4343 02:31:42,720 --> 02:31:44,560 ANYTHING ON THAT EITHER, SO IF 4344 02:31:44,560 --> 02:31:46,760 YOU HAPPEN TO KNOW OF ANY 4345 02:31:46,760 --> 02:31:48,960 REFERENCES THAT WOULD BE 4346 02:31:48,960 --> 02:31:53,120 HELPFUL. 4347 02:31:53,120 --> 02:31:54,480 SO DO WE HAVE ANY OTHER COMMENTS 4348 02:31:54,480 --> 02:31:58,240 IN THIS AREA? 4349 02:31:58,240 --> 02:31:59,800 AND DO YOU HAVE MORE, IVANOVA? 4350 02:31:59,800 --> 02:32:01,240 I DON'T KNOW IF YOU MIGHT HAVE 4351 02:32:01,240 --> 02:32:01,920 LEFT YOUR HAND UP. 4352 02:32:01,920 --> 02:32:02,880 >> OH, SHO. 4353 02:32:02,880 --> 02:32:04,320 I'M SORRY, I JUST LEFT MY HAND 4354 02:32:04,320 --> 02:32:04,480 UP. 4355 02:32:04,480 --> 02:32:05,640 >> THAT'S OKAY. 4356 02:32:05,640 --> 02:32:08,480 THAT'S OKAY. 4357 02:32:08,480 --> 02:32:08,680 DENA? 4358 02:32:08,680 --> 02:32:09,880 >> JUST ONE COMMENT. 4359 02:32:09,880 --> 02:32:11,280 PART OF THE REASON WHY WE DON'T 4360 02:32:11,280 --> 02:32:14,560 HAVE A LOT OF INFORMATION ON 4361 02:32:14,560 --> 02:32:17,440 THIS IS THAT WE'RE NOT 4362 02:32:17,440 --> 02:32:18,640 RECOGNIZING THE VALUE OF 4363 02:32:18,640 --> 02:32:20,280 QUALITATIVE RESEARCH, BECAUSE 4364 02:32:20,280 --> 02:32:22,800 THAT'S WHERE SOME OF THESE MORE 4365 02:32:22,800 --> 02:32:25,960 MARGINALIZED POPULATIONS ARE 4366 02:32:25,960 --> 02:32:27,360 REPORTING OUT, WHEN WE CAN'T GET 4367 02:32:27,360 --> 02:32:28,720 THEM IN BIGGER DATASETS BECAUSE 4368 02:32:28,720 --> 02:32:31,440 WE'VE DONE SUCH AN INADEQUATE 4369 02:32:31,440 --> 02:32:33,640 JOB OF BREAKING DOWN DIVERSE 4370 02:32:33,640 --> 02:32:34,400 POPULATIONS. 4371 02:32:34,400 --> 02:32:36,240 SO I GUESS I JUTS WANT TO POINT 4372 02:32:36,240 --> 02:32:40,520 OUT THE VALUE OF THOSE LIVED 4373 02:32:40,520 --> 02:32:42,160 EXPERIENCES IN THAT QUALITATIVE 4374 02:32:42,160 --> 02:32:42,880 RESEARCH. 4375 02:32:42,880 --> 02:32:48,160 IT LISTED ABOVE THE STATUS OF AN 4376 02:32:48,160 --> 02:32:50,360 ANECDOTAL REPORT AND PROVIDES 4377 02:32:50,360 --> 02:32:52,960 LIKE TRUE THEMES AND THEMATIC 4378 02:32:52,960 --> 02:32:56,480 ANALYSIS THAT CAN INFORM THIS. 4379 02:32:56,480 --> 02:32:58,360 SO I JUST WANTED TO PUT A SHOUT 4380 02:32:58,360 --> 02:32:59,800 OUT FOR QUALITATIVE, I GUESS. 4381 02:32:59,800 --> 02:33:00,200 >> THANK YOU. 4382 02:33:00,200 --> 02:33:01,600 AND THERE IS AN INTENTION, 4383 02:33:01,600 --> 02:33:05,560 SOCIAL DETERMINANTS OF HEALTH IS 4384 02:33:05,560 --> 02:33:07,320 IN HERE IN THE STRATEGIC PLAN, 4385 02:33:07,320 --> 02:33:09,840 IN THE NEW PLAN, AND IT INCLUDES 4386 02:33:09,840 --> 02:33:11,360 SOME SOCIAL SCIENCES RESEARCH, 4387 02:33:11,360 --> 02:33:12,880 BUT ONE OF OUR LIMITATIONS IS WE 4388 02:33:12,880 --> 02:33:16,400 DON'T HAVE ACCESS TO A SOCIAL 4389 02:33:16,400 --> 02:33:17,560 SCIENCES DATABASE, SO IT'S 4390 02:33:17,560 --> 02:33:19,000 HARDER FOR US TO FIND THAT. 4391 02:33:19,000 --> 02:33:20,200 SO I KNOW YOU'RE DOING RESEARCH 4392 02:33:20,200 --> 02:33:22,080 IN THAT AREA, OR ANYBODY ON THE 4393 02:33:22,080 --> 02:33:23,280 COMMITTEE WHO MIGHT BE DOING 4394 02:33:23,280 --> 02:33:24,440 RESEARCH IN THAT AREA, AND IF 4395 02:33:24,440 --> 02:33:26,000 YOU SEE THINGS THAT ARE COMING 4396 02:33:26,000 --> 02:33:27,200 OUT OF SOCIAL SCIENCE JOURNALS 4397 02:33:27,200 --> 02:33:28,640 THAT YOU WANT US TO INCLUDE, IF 4398 02:33:28,640 --> 02:33:29,960 YOU COULD SEND IT OUR WAY, THAT 4399 02:33:29,960 --> 02:33:32,000 WOULD BE HELPFUL, ESPECIALLY 4400 02:33:32,000 --> 02:33:33,200 SINCE I DON'T KNOW THAT WE CAN 4401 02:33:33,200 --> 02:33:37,280 ALWAYS FIND THOSE. 4402 02:33:37,280 --> 02:33:37,480 SCOTT? 4403 02:33:37,480 --> 02:33:39,000 >> YEAH, HI, SUSAN. 4404 02:33:39,000 --> 02:33:44,600 I ALSO HAVE ACCESS TO THE 4405 02:33:44,600 --> 02:33:46,680 ACADEMIC DATABASES, SO I'D BE 4406 02:33:46,680 --> 02:33:48,080 HAPPY TO SEND YOU ANY ARTICLES 4407 02:33:48,080 --> 02:33:49,280 YOU WANT AS FAR AS INCLUDING ON 4408 02:33:49,280 --> 02:33:53,040 THE SOCIAL SCIENCE AND I CONCUR 4409 02:33:53,040 --> 02:33:54,760 ALSO WITH NOT ONLY QUALITATIVE 4410 02:33:54,760 --> 02:33:56,440 RESEARCH BUT MIXED METHODS WHERE 4411 02:33:56,440 --> 02:33:57,520 IT'S QUALITATIVE AND 4412 02:33:57,520 --> 02:33:57,920 QUANTITATIVE. 4413 02:33:57,920 --> 02:34:00,600 I THINK ESPECIALLY FOR EMERGING 4414 02:34:00,600 --> 02:34:01,840 AREAS, THAT QUALITATIVE RESEARCH 4415 02:34:01,840 --> 02:34:02,560 IS NEEDED. 4416 02:34:02,560 --> 02:34:04,000 I HATE TO SAY IT LIKE THIS, BUT 4417 02:34:04,000 --> 02:34:05,520 A LOT OF AREAS THAT WE TALK 4418 02:34:05,520 --> 02:34:07,760 ABOUT A LOT, ESPECIALLY FOR 4419 02:34:07,760 --> 02:34:10,760 ADULTS AND OLDER ADOLESCENTS 4420 02:34:10,760 --> 02:34:12,160 HAVE LIMITED RESEARCH IN JUST 4421 02:34:12,160 --> 02:34:14,040 KEY AREAS OVER THE LIFE 4422 02:34:14,040 --> 02:34:14,760 EXPERIENCE, RIGHT? 4423 02:34:14,760 --> 02:34:18,400 WHERE THERE WOULD BE MAJOR 4424 02:34:18,400 --> 02:34:20,040 BENEFIT FROM HAVING MORE 4425 02:34:20,040 --> 02:34:21,280 QUALITATIVE RESEARCH AND MIXED 4426 02:34:21,280 --> 02:34:24,640 METHODS RESEARCH IN THOSE AREAS. 4427 02:34:24,640 --> 02:34:26,400 AND IT'S COMPLEMENTARY TO 4428 02:34:26,400 --> 02:34:27,880 QUANTITATIVE RESEARCH. 4429 02:34:27,880 --> 02:34:30,120 JUST SO FOLKS KNOW FOR CONTEXT, 4430 02:34:30,120 --> 02:34:31,440 SOME OF THE ISSUE ALSO IS 4431 02:34:31,440 --> 02:34:33,040 BECAUSE IN EUROPE AND OTHER 4432 02:34:33,040 --> 02:34:34,360 PARTS OF THE WORLD, THERE'S SORT 4433 02:34:34,360 --> 02:34:36,920 OF MORE OF THE VALUE FOR 4434 02:34:36,920 --> 02:34:38,880 QUALITATIVE RESEARCH AND 4435 02:34:38,880 --> 02:34:40,040 HISTORICALLY HERE IN AMERICA, 4436 02:34:40,040 --> 02:34:41,800 THERE HASN'T BEEN AS MUCH VALUE 4437 02:34:41,800 --> 02:34:43,560 PLACED ON QUALITATIVE RESEARCH, 4438 02:34:43,560 --> 02:34:45,400 WHICH IS WHY WE DON'T SEE IT 4439 02:34:45,400 --> 02:34:47,200 FUNDED SOMETIMES AS OFTEN AS 4440 02:34:47,200 --> 02:34:47,840 QUANTITATIVE RESEARCH. 4441 02:34:47,840 --> 02:34:49,600 THERE'S SORT OF A BIAS 4442 02:34:49,600 --> 02:34:50,880 INCLINATION TOWARD QUANTITATIVE 4443 02:34:50,880 --> 02:34:52,520 RESEARCH, EVEN THOUGH THEY'RE 4444 02:34:52,520 --> 02:34:53,280 COMPLIMENTARY TO EACH OTHER. 4445 02:34:53,280 --> 02:34:54,840 SO I THINK IF THERE'S WAYS TO 4446 02:34:54,840 --> 02:34:57,880 CALL THAT OUT ABOUT GREATER NEED 4447 02:34:57,880 --> 02:34:59,080 FOR QUALITATIVE RESEARCH AND 4448 02:34:59,080 --> 02:35:00,960 MIXED METHODS RESEARCH IN THESE 4449 02:35:00,960 --> 02:35:02,920 EMERGING AREAS, YOU KNOW, THAT 4450 02:35:02,920 --> 02:35:05,440 WOULD BE HELPFUL AND AGAIN, YOU 4451 02:35:05,440 --> 02:35:07,440 KNOW, HAPPY ON THE SOCIAL 4452 02:35:07,440 --> 02:35:11,000 SCIENCE END TO HELP SUPPORT IN 4453 02:35:11,000 --> 02:35:14,120 TERMS OF THE FULL TEXT PDFs 4454 02:35:14,120 --> 02:35:15,480 FOR WHAT YOU WANT TO READ ON 4455 02:35:15,480 --> 02:35:19,200 THESE THINGS AND BE ABLE TO 4456 02:35:19,200 --> 02:35:22,840 CITE, AND ANY LITERATURE THAT'S 4457 02:35:22,840 --> 02:35:23,800 OUTSIDE OF ACADEMIC TOO, THERE 4458 02:35:23,800 --> 02:35:25,440 MIGHT BE A REPORT FOR SOME OF 4459 02:35:25,440 --> 02:35:27,320 THESE EMERGING AREAS WHERE IT 4460 02:35:27,320 --> 02:35:29,600 HASN'T BEEN PUBLISHED IN PEER 4461 02:35:29,600 --> 02:35:30,600 REVIEWED SCHOLARLY JOURNALS BUT 4462 02:35:30,600 --> 02:35:31,880 MAY STILL BE OF INTEREST BECAUSE 4463 02:35:31,880 --> 02:35:34,640 IT'S, YOU KNOW, OUTSIDE DONE BY 4464 02:35:34,640 --> 02:35:35,400 PRACTITIONERS OR WHATEVER BUT IT 4465 02:35:35,400 --> 02:35:36,720 STILL MIGHT BE POTENTIALLY 4466 02:35:36,720 --> 02:35:38,040 CITEABLE. 4467 02:35:38,040 --> 02:35:38,480 >> THANK YOU. 4468 02:35:38,480 --> 02:35:41,880 THAT WOULD BE GREAT IF YOU HAVE 4469 02:35:41,880 --> 02:35:43,280 REFERENCES OR WE CERTAINLY CAN 4470 02:35:43,280 --> 02:35:44,280 REACH OUT IF THERE ARE ONES WE 4471 02:35:44,280 --> 02:35:45,360 HEAR ABOUT THAT WE'RE NOT ABLE 4472 02:35:45,360 --> 02:35:49,280 TO EASILY ACCESS. 4473 02:35:49,280 --> 02:35:50,600 SO ANY OTHER COMMENT ON THIS 4474 02:35:50,600 --> 02:36:00,040 TOPIC? 4475 02:36:00,040 --> 02:36:03,480 THANK YOU IS MUCH SO MUCH FOR E 4476 02:36:03,480 --> 02:36:04,200 HELPFUL FEEDBACK. 4477 02:36:04,200 --> 02:36:05,960 WE GOT QUITE A BIT ON THIS THAT 4478 02:36:05,960 --> 02:36:07,440 WILL HELP US BUILD IT OUT A BIT 4479 02:36:07,440 --> 02:36:08,000 MORE. 4480 02:36:08,000 --> 02:36:08,320 OKAY. 4481 02:36:08,320 --> 02:36:12,280 SO I'M GOING TO MOVE US INTO THE 4482 02:36:12,280 --> 02:36:14,760 COVID SECTION -- OH, WE HAD -- 4483 02:36:14,760 --> 02:36:15,880 THAT WAS ON THE ORIGINAL BREAK, 4484 02:36:15,880 --> 02:36:17,360 BUT I MOVED TO JUST BEING ONE 4485 02:36:17,360 --> 02:36:18,520 BREAK, IF THAT'S OKAY WITH 4486 02:36:18,520 --> 02:36:19,680 EVERYONE. 4487 02:36:19,680 --> 02:36:21,440 TO JUST KEEP US MOVING. 4488 02:36:21,440 --> 02:36:23,400 SO WE'LL GET OUT ON TIME OR IF 4489 02:36:23,400 --> 02:36:24,960 WE HAPPEN TO GET OUT EARLY, THAT 4490 02:36:24,960 --> 02:36:26,240 WOULD BE GREAT TOO, IF THAT 4491 02:36:26,240 --> 02:36:29,880 WORKS OUT. 4492 02:36:29,880 --> 02:36:31,080 SO WE'LL MOVE INTO COVID-19. 4493 02:36:31,080 --> 02:36:35,880 SO WE HAVE A CHAPTER ON THIS, 4494 02:36:35,880 --> 02:36:37,200 AND THE COMMITTEE WANTED THIS 4495 02:36:37,200 --> 02:36:39,480 AREA TO BE FORWARD-FACING TO 4496 02:36:39,480 --> 02:36:43,440 LOOK TO WHAT WE HAVE LEARNED 4497 02:36:43,440 --> 02:36:44,320 FROM THE COVID-19 EXPERIENCE, 4498 02:36:44,320 --> 02:36:46,360 WHAT WE'VE LEARNED ABOUT THE 4499 02:36:46,360 --> 02:36:47,600 VULNERABILITIES OF THE AUTISM 4500 02:36:47,600 --> 02:36:50,640 COMMUNITY, THE NEEDS FOR 4501 02:36:50,640 --> 02:36:55,040 ADDITIONAL SERVICES AND 4502 02:36:55,040 --> 02:36:56,440 ASSISTANCE IN VARIOUS WAYS AND 4503 02:36:56,440 --> 02:36:57,560 WHAT THE IMPACT HAS BEEN ON THE 4504 02:36:57,560 --> 02:37:00,400 RESEARCH COMMUNITY. 4505 02:37:00,400 --> 02:37:01,720 SO WE'VE INCLUDED THE TOPIC SO 4506 02:37:01,720 --> 02:37:03,240 FAR OF COVID-19 AND PHYSICAL 4507 02:37:03,240 --> 02:37:04,560 HEALTH, INCLUDING HEIGHTENED 4508 02:37:04,560 --> 02:37:07,880 RISK OF COVID-19 IN THE AUTISM 4509 02:37:07,880 --> 02:37:09,360 COMMUNITY AND THE IMPACT OF, 4510 02:37:09,360 --> 02:37:17,320 SAY, CONGREGATE CARE, IMPACT OF 4511 02:37:17,320 --> 02:37:19,120 COVID-19 ON MATERNAL HEALTH AND 4512 02:37:19,120 --> 02:37:20,440 PRE AND POSTNATAL DEVELOPMENT, 4513 02:37:20,440 --> 02:37:21,520 IMPACT OF COVID-19 MITIGATION 4514 02:37:21,520 --> 02:37:24,440 EFFORTS INCLUDING VACCINES, 4515 02:37:24,440 --> 02:37:25,960 DISTRIBUTION AND UP TAKE, 4516 02:37:25,960 --> 02:37:27,760 SENSORY AND COMMUNICATION ISSUES 4517 02:37:27,760 --> 02:37:28,600 ASSOCIATED WITH PREVENTIVE 4518 02:37:28,600 --> 02:37:30,400 EFFORTS OR INTERVENTIONS, 4519 02:37:30,400 --> 02:37:32,000 SERVICES DISRUPTIONS AND 4520 02:37:32,000 --> 02:37:33,920 INCLUDING EDUCATIONAL 4521 02:37:33,920 --> 02:37:34,760 DISRUPTIONS, AND MENTAL HEALTH 4522 02:37:34,760 --> 02:37:38,040 IMPACTS OF PHYSICAL DISTANCING. 4523 02:37:38,040 --> 02:37:42,840 THE IMPACT OF COVID-19 ON AUTISM 4524 02:37:42,840 --> 02:37:45,880 RESEARCH AND RESEARCHERS, AND 4525 02:37:45,880 --> 02:37:47,960 WHAT HAVE WE LEARNED AND HOW WE 4526 02:37:47,960 --> 02:37:49,720 CAN PREPARE BETTER FOR THE 4527 02:37:49,720 --> 02:37:50,160 FUTURE. 4528 02:37:50,160 --> 02:37:53,560 AND INCLUDING INFECTIOUS DISEASE 4529 02:37:53,560 --> 02:37:56,280 PREPAREDNESS. 4530 02:37:56,280 --> 02:37:56,840 PREPAREDNESS TYPES OF 4531 02:37:56,840 --> 02:37:57,160 ACTIVITIES. 4532 02:37:57,160 --> 02:37:58,360 SO THOSE ARE SOME OF THE THINGS 4533 02:37:58,360 --> 02:37:59,360 WE'VE INCLUDED HERE. 4534 02:37:59,360 --> 02:38:01,920 WITH REGARD TO COVID-19. 4535 02:38:01,920 --> 02:38:03,600 IF ANY OF YOU HAVE THOUGHTS 4536 02:38:03,600 --> 02:38:05,480 ABOUT OTHER TOPICS THAT SHOULD 4537 02:38:05,480 --> 02:38:08,080 BE MENTIONED WITH REGARD TO 4538 02:38:08,080 --> 02:38:09,840 COVID-19 AND AUTISM, WE'D BE 4539 02:38:09,840 --> 02:38:13,920 INTERESTED IN HEARING YOUR 4540 02:38:13,920 --> 02:38:20,680 FEEDBACK. 4541 02:38:20,680 --> 02:38:22,040 IVANOVA? 4542 02:38:22,040 --> 02:38:25,040 >> I WOULD JUST SAY PERSONALLY, 4543 02:38:25,040 --> 02:38:28,640 AS AN AUTISTIC PERSON, THE 4544 02:38:28,640 --> 02:38:30,400 COVID-19 PROTOCOLS HAVE BEEN 4545 02:38:30,400 --> 02:38:32,000 VERY INACCESSIBLE AND HAVE 4546 02:38:32,000 --> 02:38:34,360 REALLY AFFECTED MY MENTAL HEALTH 4547 02:38:34,360 --> 02:38:36,520 AND REALLY AFFECTED THE MENTAL 4548 02:38:36,520 --> 02:38:39,560 HEALTH OF MANY U AUTISTICS LIKEE 4549 02:38:39,560 --> 02:38:45,520 THAT HAVE SENSORY ISSUES OF 4550 02:38:45,520 --> 02:38:47,040 TEXTUAL THINGS AROUND THEIR 4551 02:38:47,040 --> 02:38:49,120 FACE, AND HAVING TRAUMA AROUND 4552 02:38:49,120 --> 02:38:50,320 BEING INSTITUTIONALIZED, IT MADE 4553 02:38:50,320 --> 02:38:53,040 ME FEEL LIKE THE COMMUNITY HAD 4554 02:38:53,040 --> 02:38:55,560 BECOME AN INSTITUTION. 4555 02:38:55,560 --> 02:38:59,600 AND THAT -- I WAS ALWAYS 4556 02:38:59,600 --> 02:39:00,920 TERRIFIED OF NOT BEING -- IF I 4557 02:39:00,920 --> 02:39:02,240 ENDED UP IN THE HOSPITAL AND NOT 4558 02:39:02,240 --> 02:39:04,840 BEING ABLE TO HAVE SUPPORT. 4559 02:39:04,840 --> 02:39:07,400 AND I THINK THAT THE PROTOCOLS 4560 02:39:07,400 --> 02:39:11,120 NEED TO HAVE UNDERSTANDING THAT 4561 02:39:11,120 --> 02:39:13,200 NOT ALL AUTISTICS CAN DO THE 4562 02:39:13,200 --> 02:39:16,440 SAME THING, AND I THINK THAT 4563 02:39:16,440 --> 02:39:17,760 THEY HAVE THIS BELIEF THAT WE 4564 02:39:17,760 --> 02:39:21,840 ALL CAN JUST DO THE SAME THING, 4565 02:39:21,840 --> 02:39:23,040 AND THAT'S NOT TRUE AND IT'S 4566 02:39:23,040 --> 02:39:28,160 CAUSED A LOT OF DISTRESS FOR THE 4567 02:39:28,160 --> 02:39:30,000 COMMUNITY AND ESPECIALLY FOR 4568 02:39:30,000 --> 02:39:32,440 AUTISTICS WHO HAVE HIGH SUPPORT 4569 02:39:32,440 --> 02:39:36,800 NEEDS AND RESTRICTIV. 4570 02:39:36,800 --> 02:39:38,000 ENVIRONMENTS. 4571 02:39:38,000 --> 02:39:39,120 THEY FOUGHT DECADES TO HAVE 4572 02:39:39,120 --> 02:39:40,000 FREEDOM IN THOSE ENVIRONMENTS 4573 02:39:40,000 --> 02:39:41,720 AND THOSE PROTOCOLS MADE THAT GO 4574 02:39:41,720 --> 02:39:44,120 BACKWARDS A LOT, AND RESTRICTED 4575 02:39:44,120 --> 02:39:47,200 PEOPLE'S RIGHTS TO THEIR 4576 02:39:47,200 --> 02:39:48,840 COMMUNITY, TO GO ON WALKS, TO DO 4577 02:39:48,840 --> 02:39:53,640 SPORTS, TO DO RECREATION, TO BE 4578 02:39:53,640 --> 02:39:56,360 WITH THEIR FAMILIES, TO DO THEIR 4579 02:39:56,360 --> 02:39:57,280 DAILY ROUTINE. 4580 02:39:57,280 --> 02:40:00,600 WHEN AN YO AUTISTIC'S PERSON'S 4581 02:40:00,600 --> 02:40:01,720 ROUTINE IS DISRUPTED THAT CAUSES 4582 02:40:01,720 --> 02:40:03,920 A LOT OF MENTAL DISTRESS, AND IT 4583 02:40:03,920 --> 02:40:06,120 COULD CAUSE MELTDOWNS, AND IF 4584 02:40:06,120 --> 02:40:08,160 PROVIDERS ARE NOT UNDERSTANDING, 4585 02:40:08,160 --> 02:40:12,360 IT CAN CAUSE A LOT OF PEOPLE TO 4586 02:40:12,360 --> 02:40:15,840 BE ABUSED IN CARE FACILITIES. 4587 02:40:15,840 --> 02:40:23,480 AND I WORRY THAT A LOT OF THAT 4588 02:40:23,480 --> 02:40:27,680 HAPPENS, MY PEERS AND I, WE SET 4589 02:40:27,680 --> 02:40:29,280 UP ZOOMS TO SUPPORT EACH OTHER 4590 02:40:29,280 --> 02:40:30,840 AND TALK WITH EACH OTHER BUT NOT 4591 02:40:30,840 --> 02:40:32,040 ALL AUTISTIC PEOPLE CAN ACCESS 4592 02:40:32,040 --> 02:40:33,680 ZOOM AND CAN ACCESS VIDEO 4593 02:40:33,680 --> 02:40:34,080 CONFERENCING. 4594 02:40:34,080 --> 02:40:36,720 THERE ARE MANY FACILITIES THAT 4595 02:40:36,720 --> 02:40:40,760 DEEFNT ADON'T EVEN ALLOW PEOPLEE 4596 02:40:40,760 --> 02:40:42,360 WIFI, THEY DON'T EVEN ALLOW 4597 02:40:42,360 --> 02:40:43,720 PEOPLE ACCESS TO THE VIRTUAL 4598 02:40:43,720 --> 02:40:44,160 COMMUNITY. 4599 02:40:44,160 --> 02:40:45,360 SO MANY PEOPLE WERE CUT OFF FROM 4600 02:40:45,360 --> 02:40:47,200 THEIR COMMUNITY BECAUSE OF THESE 4601 02:40:47,200 --> 02:40:50,360 PROTOCOLS, AND I WANT TO MAKE 4602 02:40:50,360 --> 02:40:53,200 SURE THAT IF ANOTHER PANDEMIC 4603 02:40:53,200 --> 02:40:55,480 WAS TO HAPPEN, THAT WE WOULD 4604 02:40:55,480 --> 02:40:57,360 MAKE SURE THAT THERE ARE 4605 02:40:57,360 --> 02:40:58,760 EXEMPTIONS AND THAT CARE 4606 02:40:58,760 --> 02:41:00,640 FACILITIES ARE NOT RESTRICTING 4607 02:41:00,640 --> 02:41:02,600 PEOPLE FROM THEIR RIGHTS THAT 4608 02:41:02,600 --> 02:41:06,080 HAVE VIRTUAL CONNECTION WITH 4609 02:41:06,080 --> 02:41:08,080 THEIR FRIENDS AND FAMILY AND 4610 02:41:08,080 --> 02:41:09,720 THAT THEY'RE NOT BEING DENIED 4611 02:41:09,720 --> 02:41:12,680 ACCESS TO TECHNOLOGY. 4612 02:41:12,680 --> 02:41:14,960 AND NOT BEING DENIED MEDICAL 4613 02:41:14,960 --> 02:41:17,040 CARE BECAUSE THEY CAN'T WEAR A 4614 02:41:17,040 --> 02:41:19,760 MASK OR FOLLOW CERTAIN PROTOCOLS 4615 02:41:19,760 --> 02:41:23,320 OR THEY NEED SEVERAL PEOPLE TO 4616 02:41:23,320 --> 02:41:25,040 SUPPORT THEM IN GETTING MEDICAL 4617 02:41:25,040 --> 02:41:27,760 APPOINTMENTS. 4618 02:41:27,760 --> 02:41:29,640 I'VE HAD PEERS WHO THEY NEEDED 4619 02:41:29,640 --> 02:41:31,240 TWO PEOPLE TO SUPPORT THEM IN 4620 02:41:31,240 --> 02:41:32,360 MEDICAL APPOINTMENTS, AND THEY 4621 02:41:32,360 --> 02:41:34,320 WERE DENIED ACCESS TO THEIR 4622 02:41:34,320 --> 02:41:36,320 MEDICAL CARE AND DENIED SURGERY 4623 02:41:36,320 --> 02:41:39,280 THAT THEY NEEDED BECAUSE THEY 4624 02:41:39,280 --> 02:41:40,160 COULDN'T -- THEY WEREN'T ALLOWED 4625 02:41:40,160 --> 02:41:42,440 TO HAVE TWO PEOPLE SUPPORTING 4626 02:41:42,440 --> 02:41:43,520 THAT PERSON. 4627 02:41:43,520 --> 02:41:47,560 SO THIS IS SOMETHING THAT IT'S 4628 02:41:47,560 --> 02:41:49,400 REALLY TRAUMATIC AND IT REALLY 4629 02:41:49,400 --> 02:41:51,520 HAD A NEGATIVE IMPACT ON A LOT 4630 02:41:51,520 --> 02:41:55,120 OF AUTISTIC PEOPLE, INCLUDING 4631 02:41:55,120 --> 02:41:56,560 MYSELF, AND I REALLY WANT TO 4632 02:41:56,560 --> 02:41:57,960 MAKE SURE THAT THE CDC 4633 02:41:57,960 --> 02:41:58,720 RECOGNIZES THAT AND THEY MAKE 4634 02:41:58,720 --> 02:42:01,880 SURE THAT THE PROTOCOLS ARE MORE 4635 02:42:01,880 --> 02:42:03,000 UNDERSTANDING OF THE NEEDS OF 4636 02:42:03,000 --> 02:42:04,440 AUTISTIC PEOPLE. 4637 02:42:04,440 --> 02:42:06,240 THANK YOU. 4638 02:42:06,240 --> 02:42:09,040 >> THANK YOU SO MUCH FOR SHARING 4639 02:42:09,040 --> 02:42:10,200 THAT DETAIL ABOUT THE 4640 02:42:10,200 --> 02:42:12,840 EXPERIENCES YOU AND OTHERS HAVE 4641 02:42:12,840 --> 02:42:14,280 HAD WITH REGARD TO SOME OF THESE 4642 02:42:14,280 --> 02:42:16,120 PROTOCOLS AND SO WE APPRECIATE 4643 02:42:16,120 --> 02:42:17,640 THAT INFORMATION, AND WE'LL BE 4644 02:42:17,640 --> 02:42:20,360 SURE TO INCLUDE SOMETHING ABOUT 4645 02:42:20,360 --> 02:42:22,240 INCREASING ACCESSIBILITY AND NOT 4646 02:42:22,240 --> 02:42:24,000 INFRINGING ON PEOPLE'S RIGHTS AS 4647 02:42:24,000 --> 02:42:25,960 PEOPLE TRY TO PUT TOGETHER 4648 02:42:25,960 --> 02:42:27,280 PROTOCOLS TO KEEP PEOPLE SAFE 4649 02:42:27,280 --> 02:42:31,640 DURING A PANDEMIC. 4650 02:42:31,640 --> 02:42:32,280 >> THANK YOU. 4651 02:42:32,280 --> 02:42:33,640 >> DENA. 4652 02:42:33,640 --> 02:42:35,040 YOU'RE WELCOME. 4653 02:42:35,040 --> 02:42:39,080 >> I WANTED TO BRING UP THE 4654 02:42:39,080 --> 02:42:43,760 NUMBER OF FORWARD-FACING 4655 02:42:43,760 --> 02:42:44,600 PERSONNEL IN MULTIPLE HUMAN 4656 02:42:44,600 --> 02:42:46,400 SERVICES OFFICES WHO HAVE JUST 4657 02:42:46,400 --> 02:42:49,960 SIMPLY LEFT THE INDUSTRY, WHO 4658 02:42:49,960 --> 02:42:52,120 HAVE UNFORTUNATELY DIED 4659 02:42:52,120 --> 02:42:55,360 PREMATURELY, SO THERE'S A REAL 4660 02:42:55,360 --> 02:42:55,720 DEFICIT. 4661 02:42:55,720 --> 02:42:59,200 WE'VE HAD MANY SOCIAL SECURITY 4662 02:42:59,200 --> 02:43:01,080 OFFICES THAT ARE CLOSED OR 4663 02:43:01,080 --> 02:43:02,400 REMAIN CLOSED FOR IN-PERSON 4664 02:43:02,400 --> 02:43:03,800 VISITS, WHICH CAN BE VERY 4665 02:43:03,800 --> 02:43:10,240 CRITICAL FOR COMMUNICATION. 4666 02:43:10,240 --> 02:43:13,000 AND THEN RELATED -- IT'S KIND OF 4667 02:43:13,000 --> 02:43:14,520 A CLASH OF THE DISABILITIES. 4668 02:43:14,520 --> 02:43:19,280 THE FLIP SIDE OF IVANOVA'S STORY 4669 02:43:19,280 --> 02:43:21,120 IS THE NUMBER OF AUTISTIC PEOPLE 4670 02:43:21,120 --> 02:43:23,160 WITH AUTOIMMUNE ISSUES WHO ARE 4671 02:43:23,160 --> 02:43:26,440 EQUALLY TRAPPED AT HOME BECAUSE 4672 02:43:26,440 --> 02:43:27,880 WE HAVE DECIDED TO OPEN UP THE 4673 02:43:27,880 --> 02:43:29,080 COMMUNITY SO PEOPLE DON'T HAVE 4674 02:43:29,080 --> 02:43:34,520 TO COMPLY WITH MASK ORDERS. 4675 02:43:34,520 --> 02:43:36,400 AND SO THERE'S CHALLENGES ON 4676 02:43:36,400 --> 02:43:37,600 BOTH SIDES OF THAT ARGUMENT, I 4677 02:43:37,600 --> 02:43:41,320 GUESS IS ALL I WANT TO SAY. 4678 02:43:41,320 --> 02:43:43,480 BUT I THINK ADDRESSING THE 4679 02:43:43,480 --> 02:43:46,440 WORKFORCE SHORTAGES AND SOCIAL 4680 02:43:46,440 --> 02:43:48,440 SECURITY AND VOC REHAB AND 4681 02:43:48,440 --> 02:43:50,960 EMPLOYMENT TRAINING PROTOCOLS 4682 02:43:50,960 --> 02:43:53,120 AND IN-HOME SUPPORT SERVICE 4683 02:43:53,120 --> 02:43:57,200 PERSONNEL, DIRECT SUPPORT STAFF 4684 02:43:57,200 --> 02:43:59,120 PERSONNEL, WHO ARE, BY THE WAY, 4685 02:43:59,120 --> 02:43:59,760 MASSIVELY UNDERPAID, ALL OF 4686 02:43:59,760 --> 02:44:01,080 THOSE HAVE BEEN AMPLIFIED BY 4687 02:44:01,080 --> 02:44:06,360 COVID-19. 4688 02:44:06,360 --> 02:44:08,440 >> THANK YOU, DENA, FOR THAT 4689 02:44:08,440 --> 02:44:09,320 INFORMATION AND BACKGROUND. 4690 02:44:09,320 --> 02:44:10,840 THAT'S CERTAINLY AN AREA THAT WE 4691 02:44:10,840 --> 02:44:14,040 COULD COVER IN THE PLAN. 4692 02:44:14,040 --> 02:44:15,640 NEXT I'M GOING TO GO TO STEVEN 4693 02:44:15,640 --> 02:44:17,760 TO SEE IF WE HAVE SOME WRITTEN 4694 02:44:17,760 --> 02:44:18,960 COMMENTS. 4695 02:44:18,960 --> 02:44:19,920 >> HI THERE. 4696 02:44:19,920 --> 02:44:21,880 THIS COMMENT IS FROM ALYCIA 4697 02:44:21,880 --> 02:44:22,240 HALLADAY. 4698 02:44:22,240 --> 02:44:24,640 SHE SAYS, WE NEED TO LOOK AT THE 4699 02:44:24,640 --> 02:44:27,600 EFFICACY OF ONLINE DIAGNOSES AND 4700 02:44:27,600 --> 02:44:28,080 INTERVENTIONS. 4701 02:44:28,080 --> 02:44:29,120 DURING THE PANDEMIC, WE WERE 4702 02:44:29,120 --> 02:44:30,200 THROWN INTO JUST USING IT 4703 02:44:30,200 --> 02:44:32,080 WITHOUT BEING TESTED. 4704 02:44:32,080 --> 02:44:33,800 WE ALSO NEED TO LOOK AT 4705 02:44:33,800 --> 02:44:35,760 COMPARATIVE EFFICACY ACROSS 4706 02:44:35,760 --> 02:44:37,920 DIFFERENT USES, SUCH AS MEDICAL 4707 02:44:37,920 --> 02:44:39,360 AND EDUCATIONAL, AND SYMPTOMS 4708 02:44:39,360 --> 02:44:41,040 LIKE MENTAL HEALTH OR OTHER CORE 4709 02:44:41,040 --> 02:44:46,400 FEATURES. 4710 02:44:46,400 --> 02:44:49,240 >> THANK YOU, ALYCIA, FOR THOSE 4711 02:44:49,240 --> 02:44:50,040 COMMENTS. 4712 02:44:50,040 --> 02:44:53,040 THAT'S DEFINITELY HELPFUL WITH 4713 02:44:53,040 --> 02:44:54,680 REGARD TO REMOTE SERVICES THAT 4714 02:44:54,680 --> 02:44:56,880 PEOPLE HAVE BEEN GETTING AND 4715 02:44:56,880 --> 02:44:58,000 HEALTHCARE, SO WE'LL BE SURE TO 4716 02:44:58,000 --> 02:45:00,920 INCLUDE THAT. 4717 02:45:00,920 --> 02:45:11,240 JENNIFER JOHNSON. 4718 02:45:26,920 --> 02:45:28,280 AND IT LOOKS LIKE YOU'RE 4719 02:45:28,280 --> 02:45:28,840 UNMUTED, JENNIFER. 4720 02:45:28,840 --> 02:45:39,200 ARE YOU ABLE TO SPEAK? 4721 02:45:42,360 --> 02:45:43,600 I KNOW IT MIGHT BE CHALLENGING 4722 02:45:43,600 --> 02:45:44,960 IF YOU'RE ON A REMOTE DEVICE. 4723 02:45:44,960 --> 02:45:46,760 >> SHE'S ON A PHONE, I THINK IT 4724 02:45:46,760 --> 02:45:48,080 LOOKS LIKE, BASED ON THE 4725 02:45:48,080 --> 02:45:48,520 PARTICIPANT LIST. 4726 02:45:48,520 --> 02:45:50,400 I DON'T KNOW IF SHE HAS TO HIT 4727 02:45:50,400 --> 02:45:51,720 SOMETHING TO UNMUTE ON THE 4728 02:45:51,720 --> 02:45:51,920 PHONE? 4729 02:45:51,920 --> 02:45:52,560 >> PROBABLY. 4730 02:45:52,560 --> 02:45:54,080 AND IT'S A LITTLE HARD TO SEE ON 4731 02:45:54,080 --> 02:45:59,880 A SMALL DEVICE. 4732 02:45:59,880 --> 02:46:01,480 THERE YOU ARE. 4733 02:46:01,480 --> 02:46:03,280 >> I THOUGHT I HAD UNMUTED 4734 02:46:03,280 --> 02:46:05,280 MYSELF ON THE PHONE BUT I GUESS 4735 02:46:05,280 --> 02:46:06,480 I HADN'T. 4736 02:46:06,480 --> 02:46:10,640 SO I THINK WHAT I'M GOING TO SAY 4737 02:46:10,640 --> 02:46:13,480 IS, IT'S BEEN SAID A LITTLE BIT 4738 02:46:13,480 --> 02:46:14,600 ALREADY BY SEVERAL FOLKS, BUT 4739 02:46:14,600 --> 02:46:15,760 ONE OF THE THINGS THAT CERTAINLY 4740 02:46:15,760 --> 02:46:19,480 CAME TO THE FOREFRONT WITH COVID 4741 02:46:19,480 --> 02:46:24,840 WAS JUST OVERALL ACCESS TO CARE 4742 02:46:24,840 --> 02:46:28,040 AND QUALITIES THAT ARE USED IN 4743 02:46:28,040 --> 02:46:29,240 MAKING MEDICAL DECISIONS. 4744 02:46:29,240 --> 02:46:31,040 SO I THINK THERE'S A LOT OF 4745 02:46:31,040 --> 02:46:33,160 EMERGING WORK THAT'S GOING ON 4746 02:46:33,160 --> 02:46:34,360 AROUND THE USE OF QUALITY OF 4747 02:46:34,360 --> 02:46:36,680 LIFE INDICATORS THAT RELATES TO 4748 02:46:36,680 --> 02:46:39,360 MEDICAL DECISION-MAKING, AND THE 4749 02:46:39,360 --> 02:46:41,240 DISCRIMINATION AND ABLEISM THAT 4750 02:46:41,240 --> 02:46:43,000 OCCURS WITHIN ALL OF THAT. 4751 02:46:43,000 --> 02:46:45,720 SO I THINK IT'S IMPORTANT THAT 4752 02:46:45,720 --> 02:46:48,080 THE STRATEGIC PLAN INCLUDES 4753 02:46:48,080 --> 02:46:52,160 THOSE KINDS OF ISSUES. 4754 02:46:52,160 --> 02:46:53,800 AND TALKING A LITTLE BIT ABOUT 4755 02:46:53,800 --> 02:46:56,120 THE HOME AND COMMUNITY-BASED 4756 02:46:56,120 --> 02:46:58,840 SYSTEM AND HOW IT WAS REALLY 4757 02:46:58,840 --> 02:47:03,880 IMPACTED BY THE PANDEMIC, AND IT 4758 02:47:03,880 --> 02:47:06,720 WAS AN INFRASTRUCTURE THAT 4759 02:47:06,720 --> 02:47:09,120 ALREADY HAD SOME ISSUES BUT 4760 02:47:09,120 --> 02:47:11,320 CERTAINLY COVID REALLY TRULY 4761 02:47:11,320 --> 02:47:15,360 IMPACTED ALL PARTS OF HCBS BUT 4762 02:47:15,360 --> 02:47:19,320 WE'VE ALSO SEEN SOME REALLY GOOD 4763 02:47:19,320 --> 02:47:20,400 THINGS EMERGING FROM THE 4764 02:47:20,400 --> 02:47:21,160 PANDEMIC AS A RESULT OF THE 4765 02:47:21,160 --> 02:47:23,480 IMPACT THAT IT HAD ON HOME AND 4766 02:47:23,480 --> 02:47:24,880 COMMUNITY-BASED SERVICES, SO FOR 4767 02:47:24,880 --> 02:47:28,280 EXAMPLE, WE SAW PROVIDERS 4768 02:47:28,280 --> 02:47:29,360 COMPLETELY TRANSFORM THE WAY 4769 02:47:29,360 --> 02:47:30,360 THAT THEY WERE PROVIDING 4770 02:47:30,360 --> 02:47:33,200 SERVICES AND SUPPORTS, SO I 4771 02:47:33,200 --> 02:47:34,640 THINK IT'S WORTH LOOKING AT, NOT 4772 02:47:34,640 --> 02:47:38,560 ONLY THE IMPACT OF COVID ON THE 4773 02:47:38,560 --> 02:47:41,400 HCBS INFRASTRUCTURE, BUT ALSO 4774 02:47:41,400 --> 02:47:44,800 WHAT HAS BEEN EMERGING AS MORE 4775 02:47:44,800 --> 02:47:46,240 EFFICIENT AND BETTER WAYS OF 4776 02:47:46,240 --> 02:47:50,120 DOING SERVICES AND SUPPORTS. 4777 02:47:50,120 --> 02:47:51,280 THE OTHER THING I THINK THAT'S 4778 02:47:51,280 --> 02:47:54,640 IMPORTANT TO LOOK AT IS WE 4779 02:47:54,640 --> 02:47:59,760 CERTAINLY KNEW THAT PEOPLE WITH 4780 02:47:59,760 --> 02:48:00,640 DISABILITIES WERE AT GREATER 4781 02:48:00,640 --> 02:48:02,360 RISK OF BEING INSTITUTIONALIZED 4782 02:48:02,360 --> 02:48:03,560 FOR A VARIETY OF REASONS AS A 4783 02:48:03,560 --> 02:48:05,240 RESULT OF THE PANDEMIC. 4784 02:48:05,240 --> 02:48:09,080 I THINK IT'S IMPORTANT TO KNOW 4785 02:48:09,080 --> 02:48:13,880 WHERE FOLKS ARE AND IF WE SAW 4786 02:48:13,880 --> 02:48:15,080 INCREASES IN INSTITUTIONAL 4787 02:48:15,080 --> 02:48:17,880 SETTINGS FOR PEOPLE. 4788 02:48:17,880 --> 02:48:20,440 OR WHETHER IT SLOWED -- WE THINK 4789 02:48:20,440 --> 02:48:22,000 IT SLOWED THE MOVEMENT OF PEOPLE 4790 02:48:22,000 --> 02:48:23,640 OUT OF INSTITUTIONAL SETTINGS 4791 02:48:23,640 --> 02:48:24,600 BUT UNDERSTANDING THAT, I THINK 4792 02:48:24,600 --> 02:48:27,880 IS IMPORTANT AS WELL. 4793 02:48:27,880 --> 02:48:30,160 THEN THE LAST THING IS JUST THAT 4794 02:48:30,160 --> 02:48:32,800 WE KNOW THAT ALL DISASTERS AND 4795 02:48:32,800 --> 02:48:33,800 EMERGENCIES REQUIRE LOCAL 4796 02:48:33,800 --> 02:48:35,560 RESPONSES AND STATE RESPONSES, 4797 02:48:35,560 --> 02:48:38,160 AND IT'S ALL GOING TO VARY BASED 4798 02:48:38,160 --> 02:48:42,080 ON THAT LOCAL SYSTEM AND STATE 4799 02:48:42,080 --> 02:48:44,840 SYSTEM. 4800 02:48:44,840 --> 02:48:46,080 WE ALSO KNOW IT REALLY REQUIRES 4801 02:48:46,080 --> 02:48:47,800 A LOT OF PARTNERSHIP TO ADDRESS 4802 02:48:47,800 --> 02:48:51,400 THE NEEDS OF PEOPLE WITH 4803 02:48:51,400 --> 02:48:52,080 DISABILITIES. 4804 02:48:52,080 --> 02:48:53,720 SO THE EXTENT TO WHICH WE CAN 4805 02:48:53,720 --> 02:48:54,680 INCORPORATE THOSE KINDS OF 4806 02:48:54,680 --> 02:48:57,320 THINGS AND HIGHLIGHT THAT OR 4807 02:48:57,320 --> 02:48:58,400 HIGHLIGHT WHERE IT'S WORKING OR 4808 02:48:58,400 --> 02:49:00,120 THE NEED FOR THAT, OR ANY 4809 02:49:00,120 --> 02:49:05,600 SUPPORT THAT WE CAN GIVE FOR THE 4810 02:49:05,600 --> 02:49:06,520 PARTNERSHIPS TO BE THERE AT THE 4811 02:49:06,520 --> 02:49:08,360 LOCAL AND STATE LEVEL, TO MAKE 4812 02:49:08,360 --> 02:49:09,680 SURE THAT PEOPLE WITH 4813 02:49:09,680 --> 02:49:13,280 DISABILITIES ARE INCLUDED IN ANY 4814 02:49:13,280 --> 02:49:15,440 KIND OF DISASTER, WE SAW THAT 4815 02:49:15,440 --> 02:49:18,280 WHERE THOSE RELATIONSHIPS 4816 02:49:18,280 --> 02:49:19,200 EXISTED, EITHER AT THE LOCAL OR 4817 02:49:19,200 --> 02:49:23,120 THE STATE LEVEL, REALLY HELPED 4818 02:49:23,120 --> 02:49:24,320 EITHER THAT LOCAL AREA OR THE 4819 02:49:24,320 --> 02:49:25,400 STATE OVERALL TO BETTER RESPOND 4820 02:49:25,400 --> 02:49:28,920 TO THE NEEDS OF PEOPLE WITH 4821 02:49:28,920 --> 02:49:30,760 DISABILITIES. 4822 02:49:30,760 --> 02:49:31,960 >> THANK YOU, JENNIFER. 4823 02:49:31,960 --> 02:49:33,880 AND I KNOW THAT WE ALSO HAVE 4824 02:49:33,880 --> 02:49:38,440 SOME FEDERAL COORDINATION AROUND 4825 02:49:38,440 --> 02:49:39,120 DISASTER PLANNING AND PEOPLE 4826 02:49:39,120 --> 02:49:40,080 WITH DISABILITY AS WELL THAT 4827 02:49:40,080 --> 02:49:40,840 WE'LL MENTION. 4828 02:49:40,840 --> 02:49:42,160 WE'RE GOING TO ADD A SECTION 4829 02:49:42,160 --> 02:49:44,880 THAT WILL BE ABOUT COORDINATION 4830 02:49:44,880 --> 02:49:46,400 EFFORTS BECAUSE AS WE KNOW FROM 4831 02:49:46,400 --> 02:49:48,160 OUR ICC MEETINGS, AND I'VE BEEN 4832 02:49:48,160 --> 02:49:49,480 TRYING TO GIVE OUT REPORTS ON 4833 02:49:49,480 --> 02:49:53,200 ALL THE DIFFERENT FACA COMMIT 4834 02:49:53,200 --> 02:49:57,280 EYES THCOMMITTEES THAT ARE MEET, 4835 02:49:57,280 --> 02:49:58,560 WE'RE ALSO DOING WORK ON 4836 02:49:58,560 --> 02:49:59,520 PREPAREDNESS SO WE CAN CERTAINLY 4837 02:49:59,520 --> 02:50:00,640 ADD THAT INTO THIS SECTION. 4838 02:50:00,640 --> 02:50:01,520 SO THANK YOU FOR THAT. 4839 02:50:01,520 --> 02:50:09,400 NEXT I'LL GO TO LINDSEY NEBEKER. 4840 02:50:09,400 --> 02:50:10,560 >> HI, YES. 4841 02:50:10,560 --> 02:50:12,120 I THINK THIS WAS ACTUALLY 4842 02:50:12,120 --> 02:50:13,200 STARTING TO BE BROUGHT UP 4843 02:50:13,200 --> 02:50:14,840 ALREADY, BUT I WAS TAKING A LOOK 4844 02:50:14,840 --> 02:50:21,240 AT THIS DOCUMENT HE HERE, AND 4845 02:50:21,240 --> 02:50:22,520 THERE'S VERY LITTLE MENTION OR 4846 02:50:22,520 --> 02:50:27,440 EMPHASIS THAT TALKS ABOUT 4847 02:50:27,440 --> 02:50:28,640 ACCESSIBILITY TO COVID VACCINES 4848 02:50:28,640 --> 02:50:30,160 AND TREATMENT, AS WELL AS 4849 02:50:30,160 --> 02:50:33,120 VACCINE EDUCATION. 4850 02:50:33,120 --> 02:50:34,440 I THINK THAT WAS STARTED TO BE 4851 02:50:34,440 --> 02:50:36,080 BRUSHED ON, AND I WOULD -- YOU 4852 02:50:36,080 --> 02:50:37,920 KNOW, I WOULD SUPPORT THE IDEA 4853 02:50:37,920 --> 02:50:41,560 OF INCLUDING A PART ABOUT 4854 02:50:41,560 --> 02:50:44,080 COLLABORATIVE EFFORTS THAT ARE 4855 02:50:44,080 --> 02:50:47,560 BEING MADE TO IMPROVE THOSE 4856 02:50:47,560 --> 02:50:50,680 EFFORTS. 4857 02:50:50,680 --> 02:50:55,840 I THINK I SEE MORE EMPHASIS IN 4858 02:50:55,840 --> 02:50:59,040 HERE ABOUT, LIKE, HOW WE NEED TO 4859 02:50:59,040 --> 02:51:02,080 ADDRESS THE LONG TERM AFFECTS OF 4860 02:51:02,080 --> 02:51:04,280 THE PANDEMIC ON LIKE MENTAL 4861 02:51:04,280 --> 02:51:05,480 HEALTH AND WILLINGNESS AND 4862 02:51:05,480 --> 02:51:06,320 DEPRESSION AND SO FORTH. 4863 02:51:06,320 --> 02:51:10,080 BUT I ALSO WISH THAT WE CAN SEE 4864 02:51:10,080 --> 02:51:14,120 A LITTLE BIT -- SOME ADDITIONAL 4865 02:51:14,120 --> 02:51:18,040 MENTION OF HOW CAN WE MAKE THE 4866 02:51:18,040 --> 02:51:19,360 EXPERIENCE OF GETTING TREATMENT 4867 02:51:19,360 --> 02:51:21,560 FOR COVID OR GETTING A COVID 4868 02:51:21,560 --> 02:51:25,160 VACCINE MORE ACCESSIBLE OR MORE 4869 02:51:25,160 --> 02:51:26,000 ACCOMMODATING FOR THE 4870 02:51:26,000 --> 02:51:28,440 INDIVIDUAL. 4871 02:51:28,440 --> 02:51:33,360 AND THEN ALSO ADDRESSING, YOU 4872 02:51:33,360 --> 02:51:37,840 KNOW, THERE ARE INDIVIDUALS WITH 4873 02:51:37,840 --> 02:51:39,680 HIGHER SUPPORT NEEDS WHO ARE IN 4874 02:51:39,680 --> 02:51:42,440 COMMUNITY-BASED LIVING PROGRAMS 4875 02:51:42,440 --> 02:51:45,400 WHO MIGHT BE CONSIDERED ON THE 4876 02:51:45,400 --> 02:51:46,720 FIRST CATEGORY OF BEING ABLE TO 4877 02:51:46,720 --> 02:51:49,960 QUALIFY TO GET A BOOSTER OR 4878 02:51:49,960 --> 02:51:52,520 VACCINE, BUT THE ACCESSIBILITY 4879 02:51:52,520 --> 02:51:54,600 TO MAKING THOSE APPOINTMENTS, 4880 02:51:54,600 --> 02:51:57,080 THERE'S SO MANY LOOPHOLES THAT 4881 02:51:57,080 --> 02:51:59,600 ARE INVOLVED WITH THAT. 4882 02:51:59,600 --> 02:52:00,600 TO MAKE AN APPOINTMENT TO GO 4883 02:52:00,600 --> 02:52:04,960 INTO A PHARMACY TO GET IT, THEY 4884 02:52:04,960 --> 02:52:05,960 HAVE TO ACTUALLY SCHEDULE TIME 4885 02:52:05,960 --> 02:52:09,480 WHERE THEY CAN ACTUALLY GO 4886 02:52:09,480 --> 02:52:11,080 OUTSIDE TO DO IT, SO IT MAKES IT 4887 02:52:11,080 --> 02:52:14,280 MORE DIFFICULT FOR A GROUP WHICH 4888 02:52:14,280 --> 02:52:17,440 IS HIGH VULNERABILITY THAT 4889 02:52:17,440 --> 02:52:20,000 SHOULD HAV EASIER ACCESS TO IT. 4890 02:52:20,000 --> 02:52:21,240 SO ANYWAYS, THAT WAS JUST KIND 4891 02:52:21,240 --> 02:52:24,760 OF MY POINT I WANTED TO BRING 4892 02:52:24,760 --> 02:52:25,080 UP. 4893 02:52:25,080 --> 02:52:27,480 I KNOW THE AUTISM SOCIETY OF 4894 02:52:27,480 --> 02:52:29,600 AMERICA HAS PUT OUT VACCINE 4895 02:52:29,600 --> 02:52:36,680 EDUCATION INITIATIVE. 4896 02:52:36,680 --> 02:52:41,160 SO FACILITY AFFILIATES HAVE 4897 02:52:41,160 --> 02:52:44,000 HOSTED VACCINE CLINICS FOR THEIR 4898 02:52:44,000 --> 02:52:45,200 FAMILIES AND ALSO INCLUDED SOME 4899 02:52:45,200 --> 02:52:46,280 RESOURCE MATERIALS LIKE 4900 02:52:46,280 --> 02:52:46,960 HEALTHCARE COMMUNICATION BOARDS 4901 02:52:46,960 --> 02:52:51,240 AND SOCIAL STORIES THAT ARE 4902 02:52:51,240 --> 02:52:53,320 RELATED TO LEARNING ABOUT COVID 4903 02:52:53,320 --> 02:52:57,280 AND THE VACCINE SAFETY AS WELL 4904 02:52:57,280 --> 02:52:58,600 AS THE EXPERIENCE AND ACCESS TO 4905 02:52:58,600 --> 02:53:00,440 IT. 4906 02:53:00,440 --> 02:53:02,280 >> THANK YOU, LINDSEY. 4907 02:53:02,280 --> 02:53:03,800 THAT IS GREAT THAT WE COULD 4908 02:53:03,800 --> 02:53:05,000 MENTION THAT. 4909 02:53:05,000 --> 02:53:07,640 I THINK IT WAS MEANT TO BE A 4910 02:53:07,640 --> 02:53:08,720 PART OF VACCINE DISTRIBUTION AND 4911 02:53:08,720 --> 02:53:09,280 UPTAKE. 4912 02:53:09,280 --> 02:53:10,480 CERTAINLY THERE ARE A LOT OF 4913 02:53:10,480 --> 02:53:11,800 ORGANIZATIONS THAT TRIED TO 4914 02:53:11,800 --> 02:53:13,120 CREATE SENSORY-FRIENDLY 4915 02:53:13,120 --> 02:53:15,400 VACCINATION AND SO FORTH, AND 4916 02:53:15,400 --> 02:53:16,840 THERE ARE LEARNINGS FROM THAT, 4917 02:53:16,840 --> 02:53:21,320 AND I BELIEVE ASAN ALSO PUT OUT 4918 02:53:21,320 --> 02:53:22,400 SOME VERY USEFUL INFORMATION FOR 4919 02:53:22,400 --> 02:53:24,720 PEOPLE WITH DISABILITIES ABOUT 4920 02:53:24,720 --> 02:53:29,600 GETTING VACCINATED AND COVID-19 4921 02:53:29,600 --> 02:53:31,800 MITIGATION, SO THANK YOU, WE CAN 4922 02:53:31,800 --> 02:53:34,800 CERTAINLY INCREASE THE 4923 02:53:34,800 --> 02:53:35,520 INFORMATION THAT WE HAVE ABOUT 4924 02:53:35,520 --> 02:53:39,800 THAT IN THE PLAN. 4925 02:53:39,800 --> 02:53:41,640 SOILY GO TO SAM NEXT, IN CASE, 4926 02:53:41,640 --> 02:53:43,280 BASED ON ASAN, IF YOU HAVE 4927 02:53:43,280 --> 02:53:44,680 ANYTHING ELSE TO SAY ON THAT OR 4928 02:53:44,680 --> 02:53:46,040 ANYTHING ELSE THAT YOU WANTED TO 4929 02:53:46,040 --> 02:53:46,240 MENTION. 4930 02:53:46,240 --> 02:53:49,040 >> I'M NOT AT ASAN ANYMORE. 4931 02:53:49,040 --> 02:53:52,040 >> I KNOW BUT I KNOW YOU KNOW 4932 02:53:52,040 --> 02:53:52,920 ALL ABOUT WHAT THEY'RE DOING. 4933 02:53:52,920 --> 02:53:54,320 >> THEY'RE DOING SOME REALLY 4934 02:53:54,320 --> 02:53:55,680 GREAT WORK AND I ABSOLUTELY 4935 02:53:55,680 --> 02:53:56,880 RECOMMEND THAT PEOPLE CHECK OUT 4936 02:53:56,880 --> 02:53:58,840 THEIR RESOURCES, MANY OF WHICH 4937 02:53:58,840 --> 02:54:00,800 ARE IN PLAIN LANGUAGE, ON THE 4938 02:54:00,800 --> 02:54:02,440 IMPORTANCE OF VACCINATION. 4939 02:54:02,440 --> 02:54:05,160 I SENT THIS IN TO THE TEXT 4940 02:54:05,160 --> 02:54:06,480 COMMENT TOO, SO PLEASE FEEL FREE 4941 02:54:06,480 --> 02:54:10,400 TO JUST NOT READ THAT ALOUD, BUT 4942 02:54:10,400 --> 02:54:12,400 I WANT TO TALK ABOUT THE EFFECTS 4943 02:54:12,400 --> 02:54:13,680 OF LONG COVID AND LONG TERM 4944 02:54:13,680 --> 02:54:17,520 COVID ON OUR POPULATION. 4945 02:54:17,520 --> 02:54:19,280 I THINK IT WOULD BE -- 4946 02:54:19,280 --> 02:54:20,400 ESPECIALLY BECAUSE OUR 4947 02:54:20,400 --> 02:54:22,040 POPULATION TENDS TO HAVE A LOT 4948 02:54:22,040 --> 02:54:27,720 OF CO-OCCURRING DIAGNOSES, I 4949 02:54:27,720 --> 02:54:29,920 REALLY THINK IT WOULD BE WORTH 4950 02:54:29,920 --> 02:54:30,880 RESEARCHING WHETHER OR NOT WE'RE 4951 02:54:30,880 --> 02:54:32,840 MORE LIKELY TO EXPERIENCE LONG 4952 02:54:32,840 --> 02:54:34,800 COVID AND ALSO WHETHER OR NOT 4953 02:54:34,800 --> 02:54:37,000 THERE ARE DIFFERENCES IN HOW 4954 02:54:37,000 --> 02:54:39,000 LONG COVID MANIFESTS IN AUTISTIC 4955 02:54:39,000 --> 02:54:42,240 PEOPLE. 4956 02:54:42,240 --> 02:54:45,320 THERE MIGHT ALSO BE DIFFERENCES 4957 02:54:45,320 --> 02:54:48,280 IN HOW, TO DETECT LONG COVID, 4958 02:54:48,280 --> 02:54:51,040 ESPECIALLY IN PEOPLE WHO ARE 4959 02:54:51,040 --> 02:54:52,000 NON-SPEAKING, MIGHT NOT BE 4960 02:54:52,000 --> 02:54:53,640 NECESSARILY ABLE TO DESCRIBE 4961 02:54:53,640 --> 02:54:54,400 THEIR SYMPTOMS. 4962 02:54:54,400 --> 02:54:57,560 I KNOW ANECDOTALLY, THERE SEEMS 4963 02:54:57,560 --> 02:55:02,000 TO BE A PRETTY SIGNIFICANT LONG 4964 02:55:02,000 --> 02:55:05,000 COVID SORT OF OUTBREAK AMONG 4965 02:55:05,000 --> 02:55:06,960 AUTISTIC PEOPLE, MANY OF WHOM 4966 02:55:06,960 --> 02:55:09,040 ALREADY STRUGGLED WITH CHRONIC 4967 02:55:09,040 --> 02:55:10,360 FATIGUE AND CHRONIC PAIN. 4968 02:55:10,360 --> 02:55:12,760 SO I THINK IT'S REALLY WORTH 4969 02:55:12,760 --> 02:55:17,400 RESEARCHERRING. 4970 02:55:17,400 --> 02:55:18,880 >> THANK YOU, SAM, FOR THOSE 4971 02:55:18,880 --> 02:55:20,520 COMMENTS. 4972 02:55:20,520 --> 02:55:22,400 THAT'S GREAT TO THINK ABOUT THAT 4973 02:55:22,400 --> 02:55:23,680 TOO, WITH LONG COVID, AND I 4974 02:55:23,680 --> 02:55:25,440 THINK WE HAD A BRIEF MENTION 4975 02:55:25,440 --> 02:55:27,080 THAT COULD CERTAINLY ENCOURAGE 4976 02:55:27,080 --> 02:55:29,840 RESEARCH IN THAT AREA. 4977 02:55:29,840 --> 02:55:39,960 IVANOVA. 4978 02:55:42,960 --> 02:55:44,600 >> I DON'T KNOW WHY THAT 4979 02:55:44,600 --> 02:55:45,560 HAPPENED. 4980 02:55:45,560 --> 02:55:45,960 I APOLOGIZE. 4981 02:55:45,960 --> 02:55:46,680 >> IT'S OKAY. 4982 02:55:46,680 --> 02:55:47,440 NOT A PROBLEM. 4983 02:55:47,440 --> 02:55:49,200 SCOTT. 4984 02:55:49,200 --> 02:55:53,120 >> YEAH, I'M GLAD THAT SAM 4985 02:55:53,120 --> 02:55:54,800 BROUGHT UP LONG COVID, BECAUSE I 4986 02:55:54,800 --> 02:55:56,640 THINK WE SHOULD HAVE EXTENSIVE 4987 02:55:56,640 --> 02:55:59,440 MENTION ON THAT BECAUSE IT'S A 4988 02:55:59,440 --> 02:56:00,320 MAJOR PRIORITY HERE IN THE 4989 02:56:00,320 --> 02:56:01,240 FEDERAL GOVERNMENT. 4990 02:56:01,240 --> 02:56:04,320 LONG COVID IS NOW RECOGNIZED AS 4991 02:56:04,320 --> 02:56:06,560 A DISABILITY UNDER THE ADA AND 4992 02:56:06,560 --> 02:56:08,640 OTHER LAWS, FEDERAL AGENCIES AND 4993 02:56:08,640 --> 02:56:10,040 THE WHITE HOUSE HAVE EMPHASIZED 4994 02:56:10,040 --> 02:56:12,560 LONG COVID IN THE LAST YEAR, 4995 02:56:12,560 --> 02:56:14,680 YEAR AND A HALF, AND WE HAVE 4996 02:56:14,680 --> 02:56:16,720 DISCUSSED IT EXTENSIVELY HERE, 4997 02:56:16,720 --> 02:56:19,200 FOR INSTANCE, AT THE DEPARTMENT 4998 02:56:19,200 --> 02:56:22,560 OF LABOR, AND I THINK IF WE 4999 02:56:22,560 --> 02:56:23,640 COULD BOLSTER THAT A LITTLE BIT, 5000 02:56:23,640 --> 02:56:25,360 I CAN GET YOU SOME CITATIONS IF 5001 02:56:25,360 --> 02:56:26,960 THAT WOULD BE HELPFUL, SUSAN, AS 5002 02:56:26,960 --> 02:56:28,800 FAR AS THE FOCUS ACROSS THE 5003 02:56:28,800 --> 02:56:29,760 GOVERNMENT FOR LONG COVID. 5004 02:56:29,760 --> 02:56:31,320 I KNOW YOU PROBABLY ALREADY HAVE 5005 02:56:31,320 --> 02:56:35,560 SOME CITATIONS ALSO AT NIH OR 5006 02:56:35,560 --> 02:56:37,640 HHS OVERALL. 5007 02:56:37,640 --> 02:56:40,800 AND I THINK LIKE TRAUMA ON HERE 5008 02:56:40,800 --> 02:56:43,320 TOO, THAT THERE'S TRAUMA AND 5009 02:56:43,320 --> 02:56:45,720 BURNOUT AND JUST EXHAUSTION. 5010 02:56:45,720 --> 02:56:49,680 I KNOW AMONG THE GENERAL 5011 02:56:49,680 --> 02:56:50,760 POPULATION IN AMERICA AND 5012 02:56:50,760 --> 02:56:51,960 WORLDWIDE, BUT I THINK IT'S BEEN 5013 02:56:51,960 --> 02:56:53,920 EVEN GREATER IN TERMS OF THE 5014 02:56:53,920 --> 02:56:54,920 IMPACT FOR FOLKS WITH 5015 02:56:54,920 --> 02:56:56,160 DISABILITIES INCLUDING AUTISTIC 5016 02:56:56,160 --> 02:56:58,120 PEOPLE, AND THE TRANSITION BACK 5017 02:56:58,120 --> 02:56:59,280 TO, QUOTE-UNQUOTE, NORMAL LIFE 5018 02:56:59,280 --> 02:57:00,400 OR SOMETHING HAS BEEN HARD FOR A 5019 02:57:00,400 --> 02:57:04,120 LOT OF US, GIVEN THAT EMOTIONAL 5020 02:57:04,120 --> 02:57:05,200 IMPACT OVER THE LAST COUPLE 5021 02:57:05,200 --> 02:57:05,520 YEARS. 5022 02:57:05,520 --> 02:57:07,960 IT'S JUST BEEN VERY DIFFICULT ON 5023 02:57:07,960 --> 02:57:09,800 OUR SYSTEMS AS FAR AS 5024 02:57:09,800 --> 02:57:11,680 NEUROLOGICAL COGNITIVE 5025 02:57:11,680 --> 02:57:12,560 TRANSITIONING BACK TO GENERAL 5026 02:57:12,560 --> 02:57:13,520 SOCIAL LIFE, WHATEVER THAT IS. 5027 02:57:13,520 --> 02:57:15,280 I KNOW IT'S STILL GOING TO BE 5028 02:57:15,280 --> 02:57:17,240 DIFFERENT THAN 2019, BUT I THINK 5029 02:57:17,240 --> 02:57:19,120 THAT'S REALLY IMPORTANT, THAT 5030 02:57:19,120 --> 02:57:20,320 TRANSITION PROCESS FOR FOLKS, 5031 02:57:20,320 --> 02:57:24,160 AND WHAT IT MEANS FOR FUTURE 5032 02:57:24,160 --> 02:57:25,640 HEALTH EMERGENCIES, AND WE 5033 02:57:25,640 --> 02:57:28,400 SHOULD HAVE ACCESSIBILITY AND 5034 02:57:28,400 --> 02:57:29,720 RESOURCES ON DISABILITY MORE 5035 02:57:29,720 --> 02:57:31,520 BROADLY, AND MAYBE FOR AUTISTIC 5036 02:57:31,520 --> 02:57:34,840 PEOPLE ON PREPARATION FOR HEALTH 5037 02:57:34,840 --> 02:57:36,680 EMERGENCIES, AND INCLUDING 5038 02:57:36,680 --> 02:57:37,880 FUTURE POTENTIAL -- I HATE TO 5039 02:57:37,880 --> 02:57:40,080 SAY THIS, BUT POTENTIAL FUTURE 5040 02:57:40,080 --> 02:57:41,720 PANDEMICS BEYOND COVID, THIS 5041 02:57:41,720 --> 02:57:43,080 MIGHT HAPPEN AGAIN AND IF SO, WE 5042 02:57:43,080 --> 02:57:45,680 SHOULD BE PREPARED FOR THAT, AND 5043 02:57:45,680 --> 02:57:48,160 MORE READY THAN WE WERE IN 2020 5044 02:57:48,160 --> 02:57:50,160 IN TERMS OF NOT READY AT ALL AND 5045 02:57:50,160 --> 02:57:52,240 CERTAINLY NOT READY AT ALL ON 5046 02:57:52,240 --> 02:57:53,240 DISABILITY, AND WHAT WAS 5047 02:57:53,240 --> 02:57:55,560 MENTIONED ON ACCESS TO VACCINES, 5048 02:57:55,560 --> 02:57:57,600 JUST OTHER OUTREACH FOR COVID. 5049 02:57:57,600 --> 02:57:58,920 I THINK WE'VE HAD A LOT OF 5050 02:57:58,920 --> 02:57:59,920 MISSES FOR THAT. 5051 02:57:59,920 --> 02:58:02,080 I KNOW EVEN JUST RECEIVING THE 5052 02:58:02,080 --> 02:58:05,160 VACCINES WAS HARD FOR FOLKS, 5053 02:58:05,160 --> 02:58:05,880 TRANSPORTATION ACCESS AT TIMES 5054 02:58:05,880 --> 02:58:06,800 DURING THE COURSE OF THE 5055 02:58:06,800 --> 02:58:07,240 PANDEMIC. 5056 02:58:07,240 --> 02:58:11,400 THERE'S A LOT OF LESSONS LEARNED 5057 02:58:11,400 --> 02:58:11,720 ON THERE. 5058 02:58:11,720 --> 02:58:12,800 A LOT OF PEOPLE WITH 5059 02:58:12,800 --> 02:58:13,840 DISABILITIES, WE DON'T DRIVE, SO 5060 02:58:13,840 --> 02:58:14,880 GETTING OUT TO SOMEPLACE THAT'S 5061 02:58:14,880 --> 02:58:16,600 REALLY FAR AWAY IN THE MIDDLE OF 5062 02:58:16,600 --> 02:58:18,600 THE DAY WAS JUST HARD TO DO KIND 5063 02:58:18,600 --> 02:58:19,040 OF AT TIMES. 5064 02:58:19,040 --> 02:58:21,760 I DON'T THINK FOLKS RUNNING THE 5065 02:58:21,760 --> 02:58:22,880 SYSTEM, I KNOW THEY MEANT WELL 5066 02:58:22,880 --> 02:58:26,160 BUT DIDN'T UNDERSTAND THERE'S 5067 02:58:26,160 --> 02:58:27,120 BARRIERS AT TIMES AND THE 5068 02:58:27,120 --> 02:58:28,560 HOTLINES WERE NOT REALLY WELL 5069 02:58:28,560 --> 02:58:30,160 TRAINED ON DISABILITY, INCLUDING 5070 02:58:30,160 --> 02:58:31,080 PHYSICAL DISABILITIES LIKE 5071 02:58:31,080 --> 02:58:31,360 AUTISM. 5072 02:58:31,360 --> 02:58:33,240 SO I THINK IT'S SOMETHING OF 5073 02:58:33,240 --> 02:58:34,360 UTMOST IMPORTANCE. 5074 02:58:34,360 --> 02:58:35,800 AND I THINK JUST THE LESSONS 5075 02:58:35,800 --> 02:58:38,800 LEARNED ON COVID-19, POST COVID 5076 02:58:38,800 --> 02:58:40,480 COVID-19, THE RESEARCH 5077 02:58:40,480 --> 02:58:42,000 LITERATURE HAS SOME LITERATURE 5078 02:58:42,000 --> 02:58:43,640 ON AUTISM AND COVID BUT NOT AS 5079 02:58:43,640 --> 02:58:45,040 MUCH AS YOU WOULD HAVE EXPECTED 5080 02:58:45,040 --> 02:58:46,920 GIVEN HOW MUCH IT'S IMPACTED US 5081 02:58:46,920 --> 02:58:48,160 IN AMERICA AND WORLDWIDE OVER 5082 02:58:48,160 --> 02:58:49,880 THE LAST 2 1/2 YEARS. 5083 02:58:49,880 --> 02:58:51,720 THE RESEARCH LITERATURE IS NOT 5084 02:58:51,720 --> 02:58:53,160 NEARLY AS EXTENSIVE AS IT SHOULD 5085 02:58:53,160 --> 02:58:53,320 BE. 5086 02:58:53,320 --> 02:58:56,760 I DON'T KNOW WHETHER NIH HAS ANY 5087 02:58:56,760 --> 02:58:58,520 SPACE TO PRIORITIZE THAT AS 5088 02:58:58,520 --> 02:58:59,600 SOMETHING, I DON'T KNOW IF THAT 5089 02:58:59,600 --> 02:59:00,840 COULD BE PUT IN THE PLAN AS FAR 5090 02:59:00,840 --> 02:59:02,880 AS SORT OF A PRIORITY THREAD, IF 5091 02:59:02,880 --> 02:59:08,040 YOU WILL, FOR POST COVID AND FOR 5092 02:59:08,040 --> 02:59:09,560 FUTURE HEALTH EMERGENCIES IS 5093 02:59:09,560 --> 02:59:10,360 MORE RESEARCH KIND OF IN THAT 5094 02:59:10,360 --> 02:59:10,880 AREA. 5095 02:59:10,880 --> 02:59:12,600 THE IMPACT ON LIVED EXPERIENCE 5096 02:59:12,600 --> 02:59:14,000 AND YOU KNOW, THE POSITIVE 5097 02:59:14,000 --> 02:59:19,520 IMPACTS TOO, AS WAS MENTIONED BY 5098 02:59:19,520 --> 02:59:22,560 JENNIFER, IS IN SOME CASES HAS 5099 02:59:22,560 --> 02:59:23,480 OPENED DOORS TOO, SO I THINK 5100 02:59:23,480 --> 02:59:25,880 THERE SHOULD BE A BALANCE AT 5101 02:59:25,880 --> 02:59:26,640 TIMES, TELEWORKING HAS BEEN 5102 02:59:26,640 --> 02:59:31,320 HELPFUL FOR FOLKS FOR THE 5103 02:59:31,320 --> 02:59:34,800 WORKPLACE RKZ TELEHEALTH. 5104 02:59:34,800 --> 02:59:36,800 , TELEHEALTH. 5105 02:59:36,800 --> 02:59:39,760 SOME PREFER VIRTUAL OR HYBRID, 5106 02:59:39,760 --> 02:59:41,960 SOME OTHERS THRIVE BY IN-PERSON. 5107 02:59:41,960 --> 02:59:42,680 THAT'S SOMETHING WE'VE LEARNED 5108 02:59:42,680 --> 02:59:43,800 THROUGH THE PANDEMIC, THAT 5109 02:59:43,800 --> 02:59:45,200 TECHNOLOGY CAN BE MORE 5110 02:59:45,200 --> 02:59:47,080 EMPOWERING FOR FOLKS, SOMETIMES 5111 02:59:47,080 --> 02:59:48,040 SINCE THEY DON'T HAVE TO DEAL 5112 02:59:48,040 --> 02:59:49,560 WITH THE SENSORY ENVIRONMENT OF 5113 02:59:49,560 --> 02:59:51,440 THE PHYSICAL SPACE, BARRIERS 5114 02:59:51,440 --> 02:59:53,440 WHERE YOU CAN CONTROL THINGS 5115 02:59:53,440 --> 02:59:54,520 MORE AT MOMENT OKLAHOMA WITH 5116 02:59:54,520 --> 02:59:55,640 YOUR OWN ONLINE TECHNOLOGY. 5117 02:59:55,640 --> 02:59:56,840 BUT THAT DOESN'T WORK FOR SOME 5118 02:59:56,840 --> 02:59:58,360 OTHER FOLKS AS MUCH, RIGHT, SO I 5119 02:59:58,360 --> 03:00:02,160 THINK KEEP BE THAT IN MIND FOR 5120 03:00:02,160 --> 03:00:03,200 AUTISTIC PEOPLE, WE'RE LEARNING 5121 03:00:03,200 --> 03:00:04,560 ON THE BALANCE POINT FOR 5122 03:00:04,560 --> 03:00:06,000 COVID-19 ON HOW MUCH THINGS HAVE 5123 03:00:06,000 --> 03:00:08,560 CHANGED AND THE IMPACT ON 5124 03:00:08,560 --> 03:00:09,240 AUTISTIC PEOPLE. 5125 03:00:09,240 --> 03:00:10,040 THAT'S NOT BEEN RESEARCHED 5126 03:00:10,040 --> 03:00:12,560 REALLY AT ALL, IS THE -- IN 5127 03:00:12,560 --> 03:00:13,360 TERMS OF THE BENEFITS DURING 5128 03:00:13,360 --> 03:00:14,400 THIS PERIOD AND WHOO WE'VE 5129 03:00:14,400 --> 03:00:19,240 LEARNWHAT WE'VELEARNED AND HOW T 5130 03:00:19,240 --> 03:00:21,080 SHOULD BE FOR THE GESTALT FOR 5131 03:00:21,080 --> 03:00:22,080 AUTISTIC PEOPLE AND MORE ON 5132 03:00:22,080 --> 03:00:24,320 THESE BARRIERS, AS I SAID, ON 5133 03:00:24,320 --> 03:00:24,920 THE MENTAL HEALTH LONG TERM, 5134 03:00:24,920 --> 03:00:27,000 WHAT IT'S GOING TO MEAN FOR THE 5135 03:00:27,000 --> 03:00:29,880 IMPACT, HOW TO SUPPORT FOLKS AND 5136 03:00:29,880 --> 03:00:31,160 WHEN THEY HAVE TRAUMATIC 5137 03:00:31,160 --> 03:00:32,120 MEMORIES FROM THIS PERIOD AND 5138 03:00:32,120 --> 03:00:34,240 THINGS LIKE THAT, AND HOW TO 5139 03:00:34,240 --> 03:00:35,840 TREAT FOLKS RESPECTFULLY WITH 5140 03:00:35,840 --> 03:00:37,840 THE IMPACT IT'S HAD ON 5141 03:00:37,840 --> 03:00:39,560 DISRUPTING LIVES, DISRUPTING 5142 03:00:39,560 --> 03:00:40,600 SERVICES, ACCESS WAS MENTIONED 5143 03:00:40,600 --> 03:00:42,880 ON MEDICAID, HOME AND 5144 03:00:42,880 --> 03:00:45,040 COMMUNITY-BASED SERVICES. 5145 03:00:45,040 --> 03:00:46,160 I FORGOT TO MENTION THAT IN THE 5146 03:00:46,160 --> 03:00:47,680 EARLIER SERVICES SECTIONS, BUT I 5147 03:00:47,680 --> 03:00:49,400 THINK IF MAYBE -- IF YOU COULD 5148 03:00:49,400 --> 03:00:51,280 HAVE A LITTLE BIT -- IT BRINGS 5149 03:00:51,280 --> 03:00:52,920 TO MIND A LITTLE BIT OF 5150 03:00:52,920 --> 03:00:54,560 EXPANSION IN TERMS OF ON 5151 03:00:54,560 --> 03:00:56,000 MEDICAID, HCBS THROUGHOUT THE 5152 03:00:56,000 --> 03:00:57,280 PLAN ANYWAY AND THERE ARE SOME 5153 03:00:57,280 --> 03:00:58,200 OTHER CITATIONINGS I COULD SEND, 5154 03:00:58,200 --> 03:01:00,360 BUT I THINK THAT IMPACT FOR 5155 03:01:00,360 --> 03:01:02,240 AUTISTIC PEOPLE ON ACCESS TO 5156 03:01:02,240 --> 03:01:03,760 HCBS AND OTHER SUPPORTS IN THE 5157 03:01:03,760 --> 03:01:04,880 COMMUNITY AND WHAT THAT'S MEANT 5158 03:01:04,880 --> 03:01:09,120 IS REALLY IMPORTANT TO HAVE IN 5159 03:01:09,120 --> 03:01:12,520 THERE THAT'S REALLY 5160 03:01:12,520 --> 03:01:13,920 CRITICALLY -- DISRUPTION -- JUST 5161 03:01:13,920 --> 03:01:15,680 AS MUCH AS A DISRUPTION ON 5162 03:01:15,680 --> 03:01:17,560 EDUCATION, IT'S IMPORTANT FOR 5163 03:01:17,560 --> 03:01:18,640 THE PANDEMIC, SO -- BUT I THINK 5164 03:01:18,640 --> 03:01:19,840 IT'S A GOOD START FROM WHAT'S IN 5165 03:01:19,840 --> 03:01:20,280 HERE. 5166 03:01:20,280 --> 03:01:22,120 I THINK IT JUST COULD BE 5167 03:01:22,120 --> 03:01:22,920 EXPANDED A LITTLE BIT. 5168 03:01:22,920 --> 03:01:24,320 I THINK WE DO HAVE CITATIONS FOR 5169 03:01:24,320 --> 03:01:26,520 SOME OF THESE FOCUSES, AT LEAST. 5170 03:01:26,520 --> 03:01:28,680 I KNOW BURNOUT TRAUMA KIND OF 5171 03:01:28,680 --> 03:01:30,120 AREA, THAT'S GOING TO BE A PLACE 5172 03:01:30,120 --> 03:01:31,440 WHERE I DON'T EVEN KNOW IF I CAN 5173 03:01:31,440 --> 03:01:33,840 GET YOU A REPORT ON THAT ONLINE, 5174 03:01:33,840 --> 03:01:35,600 I'LL SEE IF THERE'S ANYTHING WE 5175 03:01:35,600 --> 03:01:36,360 CAN CITE ON THERE. 5176 03:01:36,360 --> 03:01:37,880 SOME OF THOSE ARE JUST GAPS THAT 5177 03:01:37,880 --> 03:01:43,240 HAVE BEEN MISSED BY RESEARCHERS. 5178 03:01:43,240 --> 03:01:43,800 >> ESPECIALLY IF YOU HAVE 5179 03:01:43,800 --> 03:01:45,320 ANYTHING ON THE BENEFITS OF, 5180 03:01:45,320 --> 03:01:46,840 SAY, REMOTE WORK OR REMOTE 5181 03:01:46,840 --> 03:01:48,920 COMMUNICATION, THAT WOULD BE 5182 03:01:48,920 --> 03:01:50,160 GREAT, AND I KNOW WE ASKED 5183 03:01:50,160 --> 03:01:51,360 EARLIER FOR ANY CITATIONS THAT 5184 03:01:51,360 --> 03:01:53,080 HAVE TO DO WITH TELEHEALTH AND 5185 03:01:53,080 --> 03:01:55,400 HOW THAT'S BEEN UTILIZED. 5186 03:01:55,400 --> 03:01:57,040 BUT THAT'S A GOOD POINT TO BRING 5187 03:01:57,040 --> 03:01:58,120 OUT THE POSITIVES. 5188 03:01:58,120 --> 03:02:00,840 I KNOW THE SIMONS FOUNDATION, 5189 03:02:00,840 --> 03:02:03,600 THE SPARC REPORT MENTIONED -- 5190 03:02:03,600 --> 03:02:04,560 ONE OF THEIR REPORTS MENTIONED 5191 03:02:04,560 --> 03:02:05,640 SOME OF THE POSITIVE -- 5192 03:02:05,640 --> 03:02:08,280 >> CAN BE -- DISABILITY AT TIMES 5193 03:02:08,280 --> 03:02:09,640 IF WE DON'T HAVE AUTISM, ARE YOU 5194 03:02:09,640 --> 03:02:11,560 ABLE TO SOMETIMES CITE 5195 03:02:11,560 --> 03:02:12,280 DISABILITY ONES? 5196 03:02:12,280 --> 03:02:15,520 >> WE CAN CITE THINGS THAT GO 5197 03:02:15,520 --> 03:02:17,280 ACROSS DISABILITIES AND APPLIES 5198 03:02:17,280 --> 03:02:17,920 TO AUTISM AS WELL. 5199 03:02:17,920 --> 03:02:18,240 >> COOL. 5200 03:02:18,240 --> 03:02:19,880 >> SO STEVEN, DO YOU HAVE A 5201 03:02:19,880 --> 03:02:21,640 WRITTEN COMMENT? 5202 03:02:21,640 --> 03:02:23,280 >> GOOD AFTERNOON. 5203 03:02:23,280 --> 03:02:25,480 THIS IS A COMMENT/QUESTION FROM 5204 03:02:25,480 --> 03:02:26,960 YETTA MYRICK. 5205 03:02:26,960 --> 03:02:28,200 THE FIRST ONE IS, IS THERE 5206 03:02:28,200 --> 03:02:29,840 ANYTHING ABOUT THE LOSS OF 5207 03:02:29,840 --> 03:02:32,360 CAREGIVERS DUE TO COVID-19 AS IT 5208 03:02:32,360 --> 03:02:35,320 RELATES TO SUPPORTS OF AUTISTIC 5209 03:02:35,320 --> 03:02:36,280 INDIVIDUALS? 5210 03:02:36,280 --> 03:02:38,480 NEXT COMMENT IS ASKING ABOUT 5211 03:02:38,480 --> 03:02:39,880 ANYTHING ABOUT HOW SCHOOL 5212 03:02:39,880 --> 03:02:44,680 CLOSURES HAVE IMPACTED AUTISTIC 5213 03:02:44,680 --> 03:02:45,920 STUDENTS' PROGRESS, AND THE LAST 5214 03:02:45,920 --> 03:02:46,880 QUESTION IS ANYTHING ON 5215 03:02:46,880 --> 03:02:48,320 TELEHEALTH. 5216 03:02:48,320 --> 03:02:50,680 >> SO I KNOW WE HAVE PLANS TO 5217 03:02:50,680 --> 03:02:53,440 INCLUDE THINGS ABOUT TELEHEALTH 5218 03:02:53,440 --> 03:02:54,680 AND THE IMPACT OF WHAT'S 5219 03:02:54,680 --> 03:02:56,960 HAPPENED WITH SCHOOLS AND ACCESS 5220 03:02:56,960 --> 03:02:58,920 TO EDUCATION, BUT I DON'T THINK 5221 03:02:58,920 --> 03:02:59,880 WE HAVE ANY INFORMATION ABOUT 5222 03:02:59,880 --> 03:03:01,360 THE LOSS OF CAREGIVERS. 5223 03:03:01,360 --> 03:03:03,400 IF YOU HAVE ANY RESOURCES ON 5224 03:03:03,400 --> 03:03:05,720 THAT, SEND TO US. 5225 03:03:05,720 --> 03:03:07,560 BUT I'M SURE THAT THAT HAS HAD 5226 03:03:07,560 --> 03:03:11,800 AN IMPACT ON MANY PEOPLE.NA DO ? 5227 03:03:11,800 --> 03:03:13,400 >> I WAS JUST GOING TO BRING UP, 5228 03:03:13,400 --> 03:03:15,280 YOU KNOW, THE LOSS OF SPECIAL 5229 03:03:15,280 --> 03:03:16,680 EDUCATION SERVICES THROUGHOUT 5230 03:03:16,680 --> 03:03:19,080 THE LOCKDOWN. 5231 03:03:19,080 --> 03:03:21,600 AND THE STUDENTS WHO, BECAUSE OF 5232 03:03:21,600 --> 03:03:22,720 CO-OCCURRING CONDITIONS, CAN 5233 03:03:22,720 --> 03:03:23,720 STILL NOT RETURN TO SCHOOL 5234 03:03:23,720 --> 03:03:25,200 BECAUSE WE LIFTED THE MASK 5235 03:03:25,200 --> 03:03:26,880 MANDATE. 5236 03:03:26,880 --> 03:03:28,600 HOW WE'RE GOING TO ADDRESS THEIR 5237 03:03:28,600 --> 03:03:32,920 LOST EDUCATIONAL OPPORTUNITIES. 5238 03:03:32,920 --> 03:03:33,840 >> DEFINITELY. 5239 03:03:33,840 --> 03:03:36,160 THAT IS AN IMPORTANT ONE THAT WE 5240 03:03:36,160 --> 03:03:39,760 WILL BE SURE TO ADDRESS. 5241 03:03:39,760 --> 03:03:42,160 SO ANY OTHER FINAL COMMENTS OR 5242 03:03:42,160 --> 03:03:44,360 IS THERE ANYBODY THAT HAS NOT 5243 03:03:44,360 --> 03:03:45,120 SPOKEN SO FAR? 5244 03:03:45,120 --> 03:03:46,440 SCOTT, I DON'T KNOW IF YOUR HAND 5245 03:03:46,440 --> 03:03:47,200 IS STILL UP? 5246 03:03:47,200 --> 03:03:48,280 YEAH, I THINK YOUR HAND WAS 5247 03:03:48,280 --> 03:03:49,280 STILL UP. 5248 03:03:49,280 --> 03:03:50,160 WAS THERE ANYBODY WHO HAS NOT 5249 03:03:50,160 --> 03:03:53,320 HAD A CHANCE TO TALK TODAY OR 5250 03:03:53,320 --> 03:03:55,080 TALK YESTERDAY THAT HAS A 5251 03:03:55,080 --> 03:03:57,040 COMMENT ABOUT ANY OF THESE 5252 03:03:57,040 --> 03:04:06,320 ANYTHING ELSE ON COVID-19 OR ANY 5253 03:04:06,320 --> 03:04:13,080 OTHER TOPICS? 5254 03:04:13,080 --> 03:04:13,600 OKAY. 5255 03:04:13,600 --> 03:04:15,040 SO IT SOUNDS LIKE WE PROBABLY 5256 03:04:15,040 --> 03:04:15,640 COVERED -- HAVE THE SOMETHING 5257 03:04:15,640 --> 03:04:18,880 ELSE THAT SOMEONE WANTS TO 5258 03:04:18,880 --> 03:04:19,080 SHARE? 5259 03:04:19,080 --> 03:04:20,640 >> I HAD A LITTLE THING THAT'S 5260 03:04:20,640 --> 03:04:22,080 TELLING ME TO UNMUTE. 5261 03:04:22,080 --> 03:04:23,280 I DON'T KNOW IF SOMEBODY WANTED 5262 03:04:23,280 --> 03:04:25,680 ME TO UNMUTE OR NOT. 5263 03:04:25,680 --> 03:04:29,080 >> MAYBE IT GOT PRESSED BY 5264 03:04:29,080 --> 03:04:29,320 ACCIDENT. 5265 03:04:29,320 --> 03:04:31,480 >> I JUST -- I WILL SAY THAT I 5266 03:04:31,480 --> 03:04:33,440 JUST AM REALLY PASSIONATE ABOUT 5267 03:04:33,440 --> 03:04:36,600 MAKING SURE THAT WE DON'T 5268 03:04:36,600 --> 03:04:39,000 RE-TRAUMATIZE PEOPLE, AND WE 5269 03:04:39,000 --> 03:04:41,200 HELP PEOPLE HEAL FROM THIS 5270 03:04:41,200 --> 03:04:44,200 TRAUMATIC EXPERIENCE. 5271 03:04:44,200 --> 03:04:45,680 >> THANK YOU, IVANOVA. 5272 03:04:45,680 --> 03:04:49,000 SO THAT'S A GOOD NOTE TO END ON 5273 03:04:49,000 --> 03:04:50,520 WITH COVID-19. 5274 03:04:50,520 --> 03:04:52,880 SO THEN I WILL -- OH, SCOTT, DO 5275 03:04:52,880 --> 03:04:54,160 YOU HAVE ANOTHER COMMENT? 5276 03:04:54,160 --> 03:04:57,640 >> JUST BRIEFLY, WHEN YOU ASKED 5277 03:04:57,640 --> 03:04:59,040 OUT ABOUT ANYTHING ELSE, IT JUST 5278 03:04:59,040 --> 03:05:01,320 ALSO BROUGHT TO MIND TOO, FOR 5279 03:05:01,320 --> 03:05:03,080 ME, SORRY, I DON'T HAVE MY 5280 03:05:03,080 --> 03:05:04,720 CAMERA, IS THE -- AND I THINK IT 5281 03:05:04,720 --> 03:05:05,920 RELATES TO COVID-19 BUT MAYBE 5282 03:05:05,920 --> 03:05:10,600 SOME OF THESE OTHER AREAS, IS 5283 03:05:10,600 --> 03:05:12,040 COGNITIVE ACCESSIBILITY OF 5284 03:05:12,040 --> 03:05:12,720 INFORMATIONAL RESOURCES TOO, 5285 03:05:12,720 --> 03:05:14,120 THAT IT'S WRITTEN IN A WAY WHERE 5286 03:05:14,120 --> 03:05:15,800 IT MAKES SENSE TO FOLKS IN MORE 5287 03:05:15,800 --> 03:05:18,200 PLAIN ENGLISH, DIRECT ENGLISH. 5288 03:05:18,200 --> 03:05:20,000 THE DIRECT LANGUAGE. 5289 03:05:20,000 --> 03:05:21,880 IT'S AN ISSUE FOR COVID-19, AND 5290 03:05:21,880 --> 03:05:23,640 IT'S AN ISSUE FOR SOME OF THESE 5291 03:05:23,640 --> 03:05:25,480 OTHER FOCUSES, IS THAT A LOT OF 5292 03:05:25,480 --> 03:05:27,160 MATERIALS FRANKLY ARE NOT 5293 03:05:27,160 --> 03:05:31,160 ACCESSIBLE TO AUTISTIC PEOPLE, 5294 03:05:31,160 --> 03:05:33,160 AND FOLKS WITH OTHER COGNITIVE 5295 03:05:33,160 --> 03:05:34,480 DISABILITIES, AND I THINK IF WE 5296 03:05:34,480 --> 03:05:39,280 COULD PUT THAT IN HERE OR MAYBE 5297 03:05:39,280 --> 03:05:40,520 ALSO OTHER PARTS, STRATEGIC PLAN 5298 03:05:40,520 --> 03:05:42,160 THAT NEEDS TO BE MORE FOCUSED ON 5299 03:05:42,160 --> 03:05:43,960 THAT COGNITIVE ACCESSIBILITY 5300 03:05:43,960 --> 03:05:46,600 AREA FOR MATERIALS AND LAY 5301 03:05:46,600 --> 03:05:47,480 SUMMARIES AND THINGS LIKE THAT 5302 03:05:47,480 --> 03:05:50,440 IN RESEARCH, AND WHEN WE ENGAGE 5303 03:05:50,440 --> 03:05:52,400 IN PROJECTS. 5304 03:05:52,400 --> 03:05:54,240 I THINK IT SOMETIMES IS THIS 5305 03:05:54,240 --> 03:05:55,680 EXTRA BARRIER AS FAR AS ACCESS, 5306 03:05:55,680 --> 03:05:56,880 AND THEN FOLKS JUST DON'T -- 5307 03:05:56,880 --> 03:05:58,000 THEY DON'T GET THE BIG PICTURE 5308 03:05:58,000 --> 03:05:59,400 KIND OF ON THAT, AND THEN 5309 03:05:59,400 --> 03:06:01,680 THEY'RE CONFUSED WHY THEY CAN'T 5310 03:06:01,680 --> 03:06:03,320 GET DIVERSE SAMPLES OR THEY 5311 03:06:03,320 --> 03:06:05,080 CAN'T -- OR FOLKS ARE JUST NOT 5312 03:06:05,080 --> 03:06:06,080 UNDERSTANDING THINGS AND THEY 5313 03:06:06,080 --> 03:06:07,720 DON'T REALIZE THAT SOMETIMES 5314 03:06:07,720 --> 03:06:09,800 THEY'RE WRITING THESE 90-WORD 5315 03:06:09,800 --> 03:06:11,320 SENTENCES THAT ARE FULL OF 5316 03:06:11,320 --> 03:06:13,400 COMPLEX LINGO THAT JUST CREATE 5317 03:06:13,400 --> 03:06:15,480 EXTRA CHALLENGES FOR FOLKS TO 5318 03:06:15,480 --> 03:06:17,360 ACCESS THAT I -- THAT WE NEED TO 5319 03:06:17,360 --> 03:06:19,400 MAKE MORE STRIDES ON THAT AS FAR 5320 03:06:19,400 --> 03:06:23,240 AS MAKING SURE INFO AND -- WHEN 5321 03:06:23,240 --> 03:06:25,560 WE WRITE MATERIALS SO DOCUMENTS 5322 03:06:25,560 --> 03:06:28,280 ARE ACCESSIBLE TO FOLKS, THAT WE 5323 03:06:28,280 --> 03:06:35,560 DISTILL THINGS DOWN AND ADD IN 5324 03:06:35,560 --> 03:06:36,920 SUMMARIES TO MAKE SURE FOLKS 5325 03:06:36,920 --> 03:06:38,800 HAVE EQUAL ACCESS TO 5326 03:06:38,800 --> 03:06:39,080 INFORMATION. 5327 03:06:39,080 --> 03:06:40,440 THAT'S BEEN UNDER DID YOU 5328 03:06:40,440 --> 03:06:45,960 STUDIED TUNDERSTUDIED TOO ANDTHS 5329 03:06:45,960 --> 03:06:47,280 ABOUT HOW THEY PRESENT 5330 03:06:47,280 --> 03:06:50,560 INFORMATION AT TIMES. 5331 03:06:50,560 --> 03:06:53,760 THERE'S ALMOST LIKE A GATE 5332 03:06:53,760 --> 03:06:55,960 KEEPING, IT'S NOT ALWAYS 5333 03:06:55,960 --> 03:06:56,800 INTENTIONAL BUT IT COMES OUT 5334 03:06:56,800 --> 03:06:58,320 LIKE THAT, BY USING CERTAIN 5335 03:06:58,320 --> 03:06:59,480 FORMS OF COMPLEX LANGUAGE, 5336 03:06:59,480 --> 03:07:00,600 THEY'RE SORT OF RESTRICTING THE 5337 03:07:00,600 --> 03:07:02,040 ABILITY FOR FOLKS TO HAVE ACCESS 5338 03:07:02,040 --> 03:07:05,440 TO INFORMATION AND RESOURCES, 5339 03:07:05,440 --> 03:07:06,840 AND I THINK SOMETIMES FOLKS JUST 5340 03:07:06,840 --> 03:07:08,720 NEED TO HAVE MORE AWARENESS AND 5341 03:07:08,720 --> 03:07:09,480 UNDERSTANDING THAT THAT'S AN 5342 03:07:09,480 --> 03:07:11,000 ISSUE OUT THERE AND MAKE SOME 5343 03:07:11,000 --> 03:07:14,640 STRIDES ON THAT FOR, AGAIN, LAY 5344 03:07:14,640 --> 03:07:16,160 SUMMARIES, PLAINER LANGUAGE AND 5345 03:07:16,160 --> 03:07:17,360 SUPPORTING THAT COGNITIVE ACCESS 5346 03:07:17,360 --> 03:07:20,440 FOR FOLKS WHO MAY THINK 5347 03:07:20,440 --> 03:07:21,200 DIFFERENTLY, LEARN DIFFERENTLY, 5348 03:07:21,200 --> 03:07:23,280 AND FOR INSTANCE, FOR FOLKS WITH 5349 03:07:23,280 --> 03:07:29,960 INTERINTELLECTUAL DISABILITIES O 5350 03:07:29,960 --> 03:07:31,000 HAVE EQUAL ACCESS TO MATERIALS. 5351 03:07:31,000 --> 03:07:32,560 >> THANK YOU, THAT'S A VERY 5352 03:07:32,560 --> 03:07:36,920 IMPORTANT POINT AND A 5353 03:07:36,920 --> 03:07:37,520 CROSS-CUTTING POINT THAT HAS 5354 03:07:37,520 --> 03:07:38,600 GONE THROUGH THE VARIOUS ASPECTS 5355 03:07:38,600 --> 03:07:40,240 OF WHAT WE'VE DISCUSSED TODAY. 5356 03:07:40,240 --> 03:07:44,040 NOW IT'S OUR TEAM'S JOB TO TRY 5357 03:07:44,040 --> 03:07:44,920 TO DISTILL SOME OF THIS 5358 03:07:44,920 --> 03:07:46,480 INFORMATION AND GET IT INTO A 5359 03:07:46,480 --> 03:07:48,880 FORMAT THAT'S READABLE AND 5360 03:07:48,880 --> 03:07:50,080 UNDERSTANDABLE AND AS YOU CAN 5361 03:07:50,080 --> 03:07:51,600 TELL, THOSE OF YOU WHO HAVE BEEN 5362 03:07:51,600 --> 03:07:53,160 WITH US THESE PAST TWO DAYS, 5363 03:07:53,160 --> 03:07:55,320 WE'VE COVERED A LOT OF TERRITORY 5364 03:07:55,320 --> 03:07:56,400 AND THERE WAS ALREADY QUITE A 5365 03:07:56,400 --> 03:07:58,160 BIT IN THE PLAN BUT WE'RE GOING 5366 03:07:58,160 --> 03:08:00,480 TO BE ABLE TO TRY TO DISTILL 5367 03:08:00,480 --> 03:08:03,000 SOME OF IT DOWN SO THAT IT CAN 5368 03:08:03,000 --> 03:08:05,240 BE PRESENTED IN AN 5369 03:08:05,240 --> 03:08:06,480 UNDERSTANDABLE WAY FOR PEOPLE TO 5370 03:08:06,480 --> 03:08:08,000 ACCESS. 5371 03:08:08,000 --> 03:08:09,200 SO THANK YOU FOR BRINGING THAT 5372 03:08:09,200 --> 03:08:09,720 UP. 5373 03:08:09,720 --> 03:08:12,480 AND STEVEN, I SAW YOU HAD A HAND 5374 03:08:12,480 --> 03:08:14,360 RAISED BUT DID THAT GET RESOLVED 5375 03:08:14,360 --> 03:08:17,000 OR IS THERE ANYTHING ELSE? 5376 03:08:17,000 --> 03:08:18,960 >> I JUST WANTED TO MAKE NOTE OF 5377 03:08:18,960 --> 03:08:21,760 A COUPLE REFERENCES THAT 5378 03:08:21,760 --> 03:08:23,080 MITCHELL PUT IN THE CHAT. 5379 03:08:23,080 --> 03:08:26,280 >> OKAY. 5380 03:08:26,280 --> 03:08:26,720 THANK YOU. 5381 03:08:26,720 --> 03:08:28,120 DO YOU WANT TO MENTION WHAT THE 5382 03:08:28,120 --> 03:08:33,360 TOPICS ARE? 5383 03:08:33,360 --> 03:08:35,120 >> IF MITCHELL IS STILL ON, HE 5384 03:08:35,120 --> 03:08:37,760 CAN, BUT THERE'S ONE FROM AUTISM 5385 03:08:37,760 --> 03:08:40,920 SPEAKS ABOUT A SURVEY FOR 5386 03:08:40,920 --> 03:08:41,920 WIDESPREAD CHALLENGES IN THE 5387 03:08:41,920 --> 03:08:44,320 AUTISM COMMUNITY AND WIDER 5388 03:08:44,320 --> 03:08:47,040 DISPARITIES, AND THEN THERE WAS 5389 03:08:47,040 --> 03:08:49,320 A JOURNAL FROM SPRINGER THAT 5390 03:08:49,320 --> 03:08:50,520 SAYS -- THAT TALKS ABOUT AUTISM 5391 03:08:50,520 --> 03:08:51,960 AND CAREGIVER IMPACT FROM 5392 03:08:51,960 --> 03:08:52,240 COVID-19. 5393 03:08:52,240 --> 03:08:53,160 >> OKAY. 5394 03:08:53,160 --> 03:09:00,520 THANK YOU. 5395 03:09:00,520 --> 03:09:02,040 SO GREAT WORK, EVERYONE, ON 5396 03:09:02,040 --> 03:09:03,480 SHARING THIS FEEDBACK. 5397 03:09:03,480 --> 03:09:04,880 THIS IS REALLY HELPFUL TO HEAR 5398 03:09:04,880 --> 03:09:06,120 FROM YOU AND IT WILL GIVE US A 5399 03:09:06,120 --> 03:09:07,520 LOT OF ADDITIONAL INFORMATION 5400 03:09:07,520 --> 03:09:08,920 THAT WE CAN TRY TO WORK INTO THE 5401 03:09:08,920 --> 03:09:09,160 DRAFT. 5402 03:09:09,160 --> 03:09:10,760 SO AS YOU KNOW, THE STRATEGIC 5403 03:09:10,760 --> 03:09:13,200 PLAN IS AN ADVISORY DOCUMENT, 5404 03:09:13,200 --> 03:09:16,160 AND WE ARE GOING TO BE USING THE 5405 03:09:16,160 --> 03:09:17,560 FEEDBACK THAT YOU'VE SHARED 5406 03:09:17,560 --> 03:09:22,080 TODAY TO HELP US REVISE IT. 5407 03:09:22,080 --> 03:09:23,600 SO THE NEXT STEPS ARE FEEDBACK 5408 03:09:23,600 --> 03:09:25,000 THAT WE'VE COLLECTED, WE WILL 5409 03:09:25,000 --> 03:09:26,520 TRY TO INCORPORATE THAT INTO 5410 03:09:26,520 --> 03:09:28,840 WHAT WE HAVE AND REVISE IT AND 5411 03:09:28,840 --> 03:09:32,000 ALSO MAKE IT INTO MORE OF A 5412 03:09:32,000 --> 03:09:34,320 PLAIN LANGUAGE FORMAT. 5413 03:09:34,320 --> 03:09:36,280 AND IACC MEMBERS AFTER TODAY ARE 5414 03:09:36,280 --> 03:09:38,240 GOING TO RECEIVE A SURVEY THAT 5415 03:09:38,240 --> 03:09:42,720 WILL SHARE WITH YOU SOME OF THE 5416 03:09:42,720 --> 03:09:44,240 WORDING FOR THE MISSION AND 5417 03:09:44,240 --> 03:09:45,640 VISION STATEMENT. 5418 03:09:45,640 --> 03:09:46,760 WE COMBINED THAT INTO ONE 5419 03:09:46,760 --> 03:09:48,000 BECAUSE THE SEPARATE MISSION AND 5420 03:09:48,000 --> 03:09:49,400 VISION SOUNDED LIKE THEY 5421 03:09:49,400 --> 03:09:51,240 OVERLAPPED AND SO THEY WERE JUST 5422 03:09:51,240 --> 03:09:54,520 COMBINED INTO ONE. 5423 03:09:54,520 --> 03:09:56,080 AND A REVISED SET OF CORE VALUES 5424 03:09:56,080 --> 03:09:57,280 THAT REFLECTS SOME OF THE KINDS 5425 03:09:57,280 --> 03:09:58,480 OF THINGS THAT WE'VE TALKED 5426 03:09:58,480 --> 03:10:02,520 ABOUT OVER THE LAST YEAR AS A 5427 03:10:02,520 --> 03:10:03,320 COMMITTEE, TRYING TO CAPTURE 5428 03:10:03,320 --> 03:10:04,600 SOME OF THE ETHOS OF THIS 5429 03:10:04,600 --> 03:10:05,720 COMMITTEE AND WHAT YOU'D LIKE TO 5430 03:10:05,720 --> 03:10:07,680 SEE, I THINK THAT WE HADN'T 5431 03:10:07,680 --> 03:10:09,120 ACTUALLY REVISED THE CORE VALUES 5432 03:10:09,120 --> 03:10:10,160 IN QUITE A FEW YEARS. 5433 03:10:10,160 --> 03:10:12,040 SO WE HAVE A REVISED SET OF 5434 03:10:12,040 --> 03:10:14,000 THOSE, AND WE WILL PROVIDE THE 5435 03:10:14,000 --> 03:10:16,000 QUESTION TEXT AND THE 5436 03:10:16,000 --> 03:10:17,520 ASPIRATIONAL GOAL TEXT, AND GIVE 5437 03:10:17,520 --> 03:10:18,720 YOU AN OPPORTUNITY TO REVIEW 5438 03:10:18,720 --> 03:10:20,200 THOSE AND MAKE ANY COMMENTS. 5439 03:10:20,200 --> 03:10:22,080 AND YOU CAN ALSO PROVIDE US 5440 03:10:22,080 --> 03:10:24,040 COMMENTS ON THE DRAFTS THAT ARE 5441 03:10:24,040 --> 03:10:25,920 OUT THERE, IF YOU HAVE ANY. 5442 03:10:25,920 --> 03:10:27,280 WE DIDN'T PROVIDE WORD DOCUMENTS 5443 03:10:27,280 --> 03:10:29,440 FOR EVERYBODY TO DO LINE EDIT 5444 03:10:29,440 --> 03:10:31,480 BECAUSE GETTING LINE EDITS FROM 5445 03:10:31,480 --> 03:10:32,480 44 PEOPLE WOULD JUST BE A LITTLE 5446 03:10:32,480 --> 03:10:33,880 BIT OVERWHELMING AND PERHAPS NOT 5447 03:10:33,880 --> 03:10:35,680 A PRODUCTIVE WAY TO GO, BUT 5448 03:10:35,680 --> 03:10:36,760 YOU'VE ALL HAD AN OPPORTUNITY TO 5449 03:10:36,760 --> 03:10:39,920 SHARE SOME OF YOUR MOST 5450 03:10:39,920 --> 03:10:41,120 IMPORTANT AREAS TODAY AND 5451 03:10:41,120 --> 03:10:42,760 YESTERDAY IN OUR MEETING, SO A 5452 03:10:42,760 --> 03:10:43,680 LOT OF THE POINT THAT YOU WANTED 5453 03:10:43,680 --> 03:10:46,160 TO MAKE, YOU'VE MADE, BULL IF 5454 03:10:46,160 --> 03:10:47,160 YOU SEE ADDITIONAL THINGS THAT 5455 03:10:47,160 --> 03:10:48,400 YOU WOULD LIKE TO POINT OUT OR 5456 03:10:48,400 --> 03:10:50,000 IF YOU WANT TO SEND US 5457 03:10:50,000 --> 03:10:51,400 REFERENCES, YOU'LL HAVE A SPACE 5458 03:10:51,400 --> 03:10:54,000 IN THE SURVEY THAT YOU CAN SEND 5459 03:10:54,000 --> 03:10:55,680 THOSE TO US AND WE'LL USE TO 5460 03:10:55,680 --> 03:10:57,960 REVISE THE DRAFT SO THAT IT'S 5461 03:10:57,960 --> 03:10:59,840 EVEN MORE REFLECTIVE OF THE 5462 03:10:59,840 --> 03:11:01,800 THOUGHTS AND IDEAS OF THIS 5463 03:11:01,800 --> 03:11:03,240 COMMITTEE, AND WE WILL SEND TO 5464 03:11:03,240 --> 03:11:06,200 YOU AT THE BEGINNING OF OCTOBER 5465 03:11:06,200 --> 03:11:09,040 IN PREPARATION FOR OUR MEETING 5466 03:11:09,040 --> 03:11:13,600 ON OCTOBER 26TH, WHICH WILL BE 5467 03:11:13,600 --> 03:11:15,280 EITHER A HYBRID MEETING WHERE 5468 03:11:15,280 --> 03:11:17,440 THE COMMITTEE WILL BE IN PERSON 5469 03:11:17,440 --> 03:11:22,160 AND OUR AWD YENTS WI AUDIENCE WN 5470 03:11:22,160 --> 03:11:23,240 VIRTUAL OR IT WILL BE ALL 5471 03:11:23,240 --> 03:11:24,200 VIRTUAL. 5472 03:11:24,200 --> 03:11:25,240 WE'RE JUST NOT REALLY SURE WHAT 5473 03:11:25,240 --> 03:11:26,200 SPACE MIGHT BE AVAILABLE AND 5474 03:11:26,200 --> 03:11:27,560 WHAT KINDS OF RESTRICTIONS THERE 5475 03:11:27,560 --> 03:11:28,200 MIGHT BE. 5476 03:11:28,200 --> 03:11:30,160 SO WE CAN'T SAY YET AS TO 5477 03:11:30,160 --> 03:11:33,800 WHETHER IT'S GOING TO BE IN 5478 03:11:33,800 --> 03:11:35,400 PERSON OR VIRTUAL. 5479 03:11:35,400 --> 03:11:37,840 BUT IF IT IS IN PERSON, ONLY THE 5480 03:11:37,840 --> 03:11:38,680 COMMITTEE WILL BE IN THE ROOM 5481 03:11:38,680 --> 03:11:40,040 BECAUSE THE COMMITTEE IS ALREADY 5482 03:11:40,040 --> 03:11:42,320 LARGE AND THERE ARE SOME SPACE 5483 03:11:42,320 --> 03:11:45,480 RESTRICTIONS NOW DUE TO COVID. 5484 03:11:45,480 --> 03:11:48,320 AND WE WILL DISCUSS THE PLAN IN 5485 03:11:48,320 --> 03:11:50,760 OCTOBER AND WE HOPE THAT IT'S IN 5486 03:11:50,760 --> 03:11:51,800 SHAPE THAT PERHAPS THE COMMITTEE 5487 03:11:51,800 --> 03:11:53,560 MIGHT BE ABLE TO APPROVE IT WITH 5488 03:11:53,560 --> 03:11:57,040 SOME CHANGES. 5489 03:11:57,040 --> 03:11:58,920 AND IF FOR SOME REAOWN IT'S NOTO 5490 03:11:58,920 --> 03:12:02,560 GETGET IT APPROVED. 5491 03:12:02,560 --> 03:12:04,200 WE WOULD LOVE TO GET IT OUT THIS 5492 03:12:04,200 --> 03:12:05,680 CALENDAR YEAR SO IT CAN BE 5493 03:12:05,680 --> 03:12:06,880 APPROVED BY THEN BUT AT THE 5494 03:12:06,880 --> 03:12:08,480 LATEST, WE WANT TO GET IT OUT AT 5495 03:12:08,480 --> 03:12:09,880 THE VERY BEGINNING OF 2023, 5496 03:12:09,880 --> 03:12:11,480 BECAUSE WE WANT TO BE OUT THERE, 5497 03:12:11,480 --> 03:12:13,360 EFFECTIVE AND BEING USED BY 5498 03:12:13,360 --> 03:12:14,120 AGENCIES AND OTHER 5499 03:12:14,120 --> 03:12:15,480 ORGANIZATIONS. 5500 03:12:15,480 --> 03:12:17,640 >> I JUST WANT TO THANK YOU, 5501 03:12:17,640 --> 03:12:18,400 SUSAN, AND YOUR TEAM. 5502 03:12:18,400 --> 03:12:20,360 THIS WAS A VERY PRODUCTIVE 5503 03:12:20,360 --> 03:12:23,960 PROCESS, AND I APPRECIATED THE 5504 03:12:23,960 --> 03:12:24,960 SUPPORT AND THE ORGANIZATION. 5505 03:12:24,960 --> 03:12:25,520 THANKS. 5506 03:12:25,520 --> 03:12:26,560 >> THANK YOU. 5507 03:12:26,560 --> 03:12:29,640 I FEEL LIKE IT'S BEEN A GREAT 5508 03:12:29,640 --> 03:12:33,040 MEETING IN TERMS OF YOUR 5509 03:12:33,040 --> 03:12:34,800 PARTICIPATION, EVERYBODY HAS 5510 03:12:34,800 --> 03:12:35,800 BEEN VERY FORTHCOMING WITH YOUR 5511 03:12:35,800 --> 03:12:38,960 THOUGHTS AND IDEAS, AND HELPFUL 5512 03:12:38,960 --> 03:12:41,440 WITH REFERENCES AND I APPRECIATE 5513 03:12:41,440 --> 03:12:42,760 THAT EVERYONE HAS BEEN REALLY 5514 03:12:42,760 --> 03:12:44,760 RESPECTFUL OF TIME AND TRYING TO 5515 03:12:44,760 --> 03:12:46,600 TAKE TURNS SO THAT WE CAN HEAR 5516 03:12:46,600 --> 03:12:50,320 FROM EVERYONE THAT WANTED TO 5517 03:12:50,320 --> 03:12:52,400 SPEAK. 5518 03:12:52,400 --> 03:12:54,240 BUT OF COURSE WE WILL HAVE A 5519 03:12:54,240 --> 03:12:55,040 WRITTEN OPPORTUNITY. 5520 03:12:55,040 --> 03:12:57,000 I KNOW SOME PEOPLE LIKE TO HAVE 5521 03:12:57,000 --> 03:12:58,760 AN OPPORTUNITY TO REFLECT. 5522 03:12:58,760 --> 03:13:00,160 I ALSO WILL BE SENDING YOU 5523 03:13:00,160 --> 03:13:03,200 INFORMATION ABOUT THE 2021 5524 03:13:03,200 --> 03:13:04,440 SUMMARY OF ADVANCES WHICH AT THE 5525 03:13:04,440 --> 03:13:06,520 APRIL MEETING WE DIDN'T GET 5526 03:13:06,520 --> 03:13:09,040 THROUGH TALKING ABOUT ALL THE 5527 03:13:09,040 --> 03:13:10,040 SUBMITTED NOMINATIONS, AND 5528 03:13:10,040 --> 03:13:12,080 WHETHER YOU HAD ANY FEEDBACK ON 5529 03:13:12,080 --> 03:13:16,040 THEM. 5530 03:13:16,040 --> 03:13:17,560 SO WE'RE GOING TO TAKE THOSE VIA 5531 03:13:17,560 --> 03:13:19,200 EMAIL AND PUT THEM INTO A FORMAT 5532 03:13:19,200 --> 03:13:20,400 SO THAT YOU CAN SEE THEM WHEN 5533 03:13:20,400 --> 03:13:21,920 YOU VOTE AND WE WILL ALSO VAIR 5534 03:13:21,920 --> 03:13:25,200 THOSE DOCUMENTS ON THE WEBSITE 5535 03:13:25,200 --> 03:13:26,320 SO THE PUBLIC HAS ACCESS. 5536 03:13:26,320 --> 03:13:27,600 WE DIDN'T REALLY WANT TO WAIT 5537 03:13:27,600 --> 03:13:28,400 UNTIL THE OCTOBER MEETING TO 5538 03:13:28,400 --> 03:13:29,360 MOVE FORWARD ON IT. 5539 03:13:29,360 --> 03:13:30,800 SO YOU'LL BE RECEIVING THAT AS 5540 03:13:30,800 --> 03:13:34,840 WELL TO FILL OUT. 5541 03:13:34,840 --> 03:13:36,600 SO WITH THAT, I'D ALSO LIKE TO 5542 03:13:36,600 --> 03:13:40,640 SAY THANK YOU TO THE OARC STAFF 5543 03:13:40,640 --> 03:13:42,040 FOR ALL THEIR HELP IN PUTTING 5544 03:13:42,040 --> 03:13:42,520 THIS MEETING TOGETHER. 5545 03:13:42,520 --> 03:13:43,840 THERE WAS A LOT OF WORK BEHIND 5546 03:13:43,840 --> 03:13:48,400 THE SEEPS, PRBEHINDTHE SCENES, E 5547 03:13:48,400 --> 03:13:50,920 DRAFTS, PREPARING THE SLIDES, 5548 03:13:50,920 --> 03:13:52,560 DISCUSSING THE ISSUES IN A LOT 5549 03:13:52,560 --> 03:13:54,200 OF DETAIL TO TRY TO CAPTURE WHAT 5550 03:13:54,200 --> 03:13:56,920 WE THINK IS NEW BASED ON THE 5551 03:13:56,920 --> 03:13:57,920 DISCUSSIONS WE'VE HAD WITH YOU 5552 03:13:57,920 --> 03:14:00,120 AND WITH FEDERAL AGENCIES, SO I 5553 03:14:00,120 --> 03:14:01,120 REALLY APPRECIATE ALL THE WORK 5554 03:14:01,120 --> 03:14:02,080 THAT'S GONE INTO ALL OF THIS, 5555 03:14:02,080 --> 03:14:03,720 AND THE WEBSITE. 5556 03:14:03,720 --> 03:14:05,560 SO THANK YOU TO THE STAFF, THANK 5557 03:14:05,560 --> 03:14:11,920 YOU TO THE ROSE LE AND 5558 03:14:11,920 --> 03:14:13,800 ASSOCIATES TEAM THAT IS OUR NEW 5559 03:14:13,800 --> 03:14:14,920 CONTRACTING AND TO NIH VIDEOCAST 5560 03:14:14,920 --> 03:14:16,960 FOR HELPING US WITH BROADCASTING 5561 03:14:16,960 --> 03:14:18,040 THIS SO PEOPLE IN THE PUBLIC 5562 03:14:18,040 --> 03:14:19,800 COULD ACCESS IT AND IT WILL BE 5563 03:14:19,800 --> 03:14:21,320 RECORDED AND PUT UP ON THE WEB 5564 03:14:21,320 --> 03:14:26,080 FOR EVERYONE TO ACCESS. 5565 03:14:26,080 --> 03:14:28,480 SO I AM WISHING EVERYONE A GREAT 5566 03:14:28,480 --> 03:14:29,320 SUMMER. 5567 03:14:29,320 --> 03:14:32,840 I HOPE EVERYONE IS ABLE TO GET A 5568 03:14:32,840 --> 03:14:35,040 LITTLE BIT OF REST AND 5569 03:14:35,040 --> 03:14:39,080 RELAXATION OTHER OVER THE SUMM, 5570 03:14:39,080 --> 03:14:40,560 THOUGH I KNOW WE'RE BUSY AND 5571 03:14:40,560 --> 03:14:42,000 WORKING ON A LOT OF IMPORTANT 5572 03:14:42,000 --> 03:14:43,200 ISSUES, BUT I HOPE PEOPLE WILL 5573 03:14:43,200 --> 03:14:44,520 TAKE TIME FOR YOUR FAMILY, 5574 03:14:44,520 --> 03:14:45,800 FRIENDS AND SOME TIME FOR 5575 03:14:45,800 --> 03:14:46,520 YOURSELF. 5576 03:14:46,520 --> 03:14:47,920 AND ARE THERE ANY LAST COMMENTS 5577 03:14:47,920 --> 03:14:49,560 BEFORE WE COMPLETE OUR MEETING 5578 03:14:49,560 --> 03:14:53,480 FOR TODAY? 5579 03:14:53,480 --> 03:14:53,680 SCOTT? 5580 03:14:53,680 --> 03:14:56,120 >> I JUST WANT TO SAY, SUSAN, 5581 03:14:56,120 --> 03:14:57,760 THANK YOU ALL, NIH, FOR 5582 03:14:57,760 --> 03:14:58,840 SPEARHEADING THE WORK OF THE 5583 03:14:58,840 --> 03:15:01,800 COMMITTEE AND THIS WORK GROUP 5584 03:15:01,800 --> 03:15:03,000 SESSION OVER YESTERDAY AND 5585 03:15:03,000 --> 03:15:03,560 TODAY. 5586 03:15:03,560 --> 03:15:07,640 I KNOW IT'S VERY COMPLEX AS FAR 5587 03:15:07,640 --> 03:15:09,000 AS A LOT OF DIFFERENT DIVERSE 5588 03:15:09,000 --> 03:15:13,360 THOUGHTS AND IDEAS AND YOU ALL 5589 03:15:13,360 --> 03:15:15,160 DO AN AMAZING JOB PUTTING THIS 5590 03:15:15,160 --> 03:15:17,880 ALL TOGETHER. 5591 03:15:17,880 --> 03:15:21,400 AND TAKING INPUT FROM DIFFERENT 5592 03:15:21,400 --> 03:15:22,040 DIVERSE VIEWPOINTS AND PUTTING 5593 03:15:22,040 --> 03:15:23,240 THAT TOGETHER TO HELP ENHANCE 5594 03:15:23,240 --> 03:15:23,880 THE STRATEGIC PLAN. 5595 03:15:23,880 --> 03:15:26,240 SO I HOPE YOU ALL KNOW THAT 5596 03:15:26,240 --> 03:15:27,840 WE -- I DON'T WANT TO SPEAK FOR 5597 03:15:27,840 --> 03:15:30,560 OTHERS, BUT LIKE, I KNOW ON MY 5598 03:15:30,560 --> 03:15:32,880 END, WE'VE DEFINITELY VERY 5599 03:15:32,880 --> 03:15:34,920 VALUED YOU ALL AS A SISTER 5600 03:15:34,920 --> 03:15:36,560 AGENCY AND THE WORK YOU ALL DO 5601 03:15:36,560 --> 03:15:38,760 FOR THE COORDINATION HERE OF THE 5602 03:15:38,760 --> 03:15:42,080 COMMITTEE AND HOW IMPORTANT IT 5603 03:15:42,080 --> 03:15:44,240 IS TO OUR STAKEHOLDERS OUT 5604 03:15:44,240 --> 03:15:46,320 THERE, THE WORK WE DO WITH THE 5605 03:15:46,320 --> 03:15:47,840 IACC, AND THE EFFORT THAT'S PUT 5606 03:15:47,840 --> 03:15:50,840 INTO HELPING SHAPE THE STRATEGIC 5607 03:15:50,840 --> 03:15:52,640 PLAN AND THE IMPACT IT HAS FOR 5608 03:15:52,640 --> 03:15:53,120 FOLKS. 5609 03:15:53,120 --> 03:15:54,600 I'M NOT SURE IF EVERYONE ALWAYS 5610 03:15:54,600 --> 03:15:55,720 UNDERSTANDS THAT WHEN THEY SEE 5611 03:15:55,720 --> 03:15:57,480 THE PLAN AND SOME OF THESE OTHER 5612 03:15:57,480 --> 03:15:58,880 DOCUMENTS COME OUT THAT THE 5613 03:15:58,880 --> 03:16:00,000 TREMENDOUS WORK THAT GOES INTO 5614 03:16:00,000 --> 03:16:04,480 THIS AND THE WORK THAT YOU ALL 5615 03:16:04,480 --> 03:16:05,400 DO BEHIND THE SCENES TO MAKE ALL 5616 03:16:05,400 --> 03:16:06,560 THIS HAPPEN AND TO MAKE THE 5617 03:16:06,560 --> 03:16:09,080 TRAINS RUN, IF YOU WILL, RUN 5618 03:16:09,080 --> 03:16:12,000 SMOOTHLY FOR THIS PROCESS, AND 5619 03:16:12,000 --> 03:16:14,320 I'M VERY GLAD THAT THIS HAS 5620 03:16:14,320 --> 03:16:15,640 WORKED SO WELL AND APPRECIATE 5621 03:16:15,640 --> 03:16:19,440 THE OPPORTUNITY TO GIVE INPUT. 5622 03:16:19,440 --> 03:16:21,360 AND I'LL BE SENDING YOU SOME -- 5623 03:16:21,360 --> 03:16:23,200 AS I SAY, SOME MORE CITATIONS 5624 03:16:23,200 --> 03:16:25,680 AND LITERATURE AND FEEL FREE, 5625 03:16:25,680 --> 03:16:27,440 ESPECIALLY ON THE SOCIAL SCIENCE 5626 03:16:27,440 --> 03:16:29,520 END, I HAVE PRETTY EXTENSIVE 5627 03:16:29,520 --> 03:16:32,480 ACADEMIC ACCESS, SO I'D BE HAPPY 5628 03:16:32,480 --> 03:16:33,800 TO -- ANYTHING YOU NEED A FULL 5629 03:16:33,800 --> 03:16:34,840 TEXT FOR, WE'LL GET YOU. 5630 03:16:34,840 --> 03:16:36,520 >> THANK YOU SO MUCH, AND WE 5631 03:16:36,520 --> 03:16:37,480 REALLY APPRECIATE THE 5632 03:16:37,480 --> 03:16:39,280 PARTNERSHIP OF ALL OUR SISTER 5633 03:16:39,280 --> 03:16:40,760 AGENCIES AND ALL THE MEMBERS OF 5634 03:16:40,760 --> 03:16:42,960 OUR COMMITTEE, PEOPLE IN THE 5635 03:16:42,960 --> 03:16:44,520 STAKEHOLDER COMMUNITY THAT INTRN 5636 03:16:44,520 --> 03:16:48,960 REHAVEBEEN REALLY THOUGHTFUL ABT 5637 03:16:48,960 --> 03:16:50,320 SHARING INPUT WITH US. 5638 03:16:50,320 --> 03:16:51,600 EVERY SINGLE MEMBER OF THE 5639 03:16:51,600 --> 03:16:53,800 COMMITTEE WHO'S SPOKEN IN THE 5640 03:16:53,800 --> 03:16:55,120 LAST TWO DAYS, WE REALLY 5641 03:16:55,120 --> 03:16:56,000 APPRECIATE EVERYTHING YOU 5642 03:16:56,000 --> 03:16:56,440 SHARED. 5643 03:16:56,440 --> 03:16:58,960 IT WAS ALL VERY IMPORTANT AND WE 5644 03:16:58,960 --> 03:17:01,000 HOPE TO DO JUSTICE TO YOUR IDEAS 5645 03:17:01,000 --> 03:17:02,000 AND GET THEM INCLUDED IN THE 5646 03:17:02,000 --> 03:17:02,440 PLAN. 5647 03:17:02,440 --> 03:17:05,480 SO THANK YOU SO MUCH FOR YOUR 5648 03:17:05,480 --> 03:17:07,800 ATTENDANCE AND PAY EXCELLENCE 5649 03:17:07,800 --> 03:17:08,440 AND PARTICIPATION. 5650 03:17:08,440 --> 03:17:10,960 WE JUST REALLY APPLAUD YOU FOR 5651 03:17:10,960 --> 03:17:11,400 YOUR WORK. 5652 03:17:11,400 --> 03:17:12,840 SO THANK YOU, AND HAVE A 5653 03:17:12,840 --> 03:17:14,000 WONDERFUL AFTERNOON. 5654 03:17:14,000 --> 00:00:00,000 GOODBYE, EVERYBODY.