1 00:00:05,200 --> 00:00:10,760 WELCOME AND I'M JOSHUA GORDON 2 00:00:10,760 --> 00:00:15,800 FROM THE INTERAGENCY 3 00:00:15,800 --> 00:00:18,720 COORDINATING COMMITTEE. 4 00:00:18,720 --> 00:00:20,560 IT'S MY PLEASURE ON BEHALF OF MY 5 00:00:20,560 --> 00:00:23,200 MEMBERS AND SUSAN DANIELS THE 6 00:00:23,200 --> 00:00:25,480 DIRECTOR OF THE OFFICE OF AUTISM 7 00:00:25,480 --> 00:00:26,240 RESEARCH COORDINATION AND 8 00:00:26,240 --> 00:00:28,200 EXECUTIVE SECRETARY OF THE IACC, 9 00:00:28,200 --> 00:00:30,200 IT'S MY PLEASURE TO WELCOME YOU 10 00:00:30,200 --> 00:00:32,200 TO THIS MEETING OF THE 11 00:00:32,200 --> 00:00:33,640 INTERAGENCY AUTISM COORDINATING 12 00:00:33,640 --> 00:00:33,920 COMMITTEE. 13 00:00:33,920 --> 00:00:35,880 WE WILL PROCEED IN A FEW MOMENTS 14 00:00:35,880 --> 00:00:37,520 WITH THE ROLL CALL AND APPROVAL 15 00:00:37,520 --> 00:00:38,160 OF MINUTES. 16 00:00:38,160 --> 00:00:40,040 BUT I JUST HAVE A FEW 17 00:00:40,040 --> 00:00:42,280 ANNOUNCEMENTS BEFORE HAND. 18 00:00:42,280 --> 00:00:43,760 AND BEFORE I GET THERE, LET ME 19 00:00:43,760 --> 00:00:48,800 REMIND ALL THE MEMBERS OF THE 20 00:00:48,800 --> 00:00:52,000 IACC, THAT WHEN YOU'RE SPEAKING, 21 00:00:52,000 --> 00:00:54,400 PLEASE ACTIVATE YOUR VIDEOS AND 22 00:00:54,400 --> 00:00:55,520 UNMUTE YOURSELVES AND WHEN 23 00:00:55,520 --> 00:00:59,120 YOU'RE NOT SPEAKING, PLEASE 24 00:00:59,120 --> 00:01:00,240 UNMUTE YOURSELF BUT LEAVE VIDEOS 25 00:01:00,240 --> 00:01:02,800 ON WHEN THERE'S NOT AN ACTIVE 26 00:01:02,800 --> 00:01:03,160 PRESENTATION. 27 00:01:03,160 --> 00:01:05,200 SOME BRIEF ANNOUNCEMENTS. 28 00:01:05,200 --> 00:01:08,200 WE'VE HAD SOME CHANGES IN 29 00:01:08,200 --> 00:01:09,520 MEMBERSHIP SINCE THE LAST 30 00:01:09,520 --> 00:01:12,960 MEETING THOUGH THIS IS A NASCENT 31 00:01:12,960 --> 00:01:13,200 COMMITTEE. 32 00:01:13,200 --> 00:01:14,720 WE'VE HAD CHANGES ALREADY. 33 00:01:14,720 --> 00:01:16,600 AS MANY MAY HAVE HEARD, MY BOSS 34 00:01:16,600 --> 00:01:20,440 AND FRIEND, DR. FRANCIS COLLINS 35 00:01:20,440 --> 00:01:25,360 HAS STEPPED DOWN FROM THIS 36 00:01:25,360 --> 00:01:28,200 LEADERSHIP ROLE OF NIH DIRECTOR 37 00:01:28,200 --> 00:01:30,080 AS OF LAST MONTH AND HE'S ALWAYS 38 00:01:30,080 --> 00:01:31,760 BEEN VERY SUPPORTIVE OF OUR 39 00:01:31,760 --> 00:01:33,480 AUTISM EFFORTS AND WE'LL MISS 40 00:01:33,480 --> 00:01:34,200 HIS LEADERSHIP. 41 00:01:34,200 --> 00:01:37,080 DR. LARRY TABAK SERVING AS THE 42 00:01:37,080 --> 00:01:39,280 ACTING DIRECTOR OF THE NATIONAL 43 00:01:39,280 --> 00:01:39,960 INSTITUTES OF HEALTH IS 44 00:01:39,960 --> 00:01:42,040 OFFICIALLY A MEMBER OF THIS 45 00:01:42,040 --> 00:01:45,960 COMMITTEE ACTING IN THAT STEAD. 46 00:01:45,960 --> 00:01:47,160 AND WILL BE UNTIL A NEW DIRECTOR 47 00:01:47,160 --> 00:01:49,520 IS APPOINTED BY THE PRESIDENT. 48 00:01:49,520 --> 00:01:52,080 DR. TABAK UNFORTUNATELY WAS NOT 49 00:01:52,080 --> 00:01:53,600 ABLE TO JOIN US TODAY BUT WILL 50 00:01:53,600 --> 00:01:55,000 PLAN TO JOIN US IN THE NEXT 51 00:01:55,000 --> 00:01:58,720 MEETING, APRIL, TO INTRODUCE 52 00:01:58,720 --> 00:01:58,960 HIMSELF. 53 00:01:58,960 --> 00:02:01,880 IN THE NEXT TIME DR. ACLIN WILL 54 00:02:01,880 --> 00:02:04,000 CONTINUE TO ATTEND ON BEHALF OF 55 00:02:04,000 --> 00:02:06,640 THE OFFICE OF THE DIRECTOR. 56 00:02:06,640 --> 00:02:08,680 ALSO, WE HAVE A NEW MEMBER FROM 57 00:02:08,680 --> 00:02:13,760 TE IT U.S. DEPARTMENT OF LABOR, 58 00:02:13,760 --> 00:02:16,440 TARYN WILLIAMS IS JOIN US AS A 59 00:02:16,440 --> 00:02:17,480 MEMBER. 60 00:02:17,480 --> 00:02:23,840 WE APPRECIATED DR. JENNIFER 61 00:02:23,840 --> 00:02:24,960 SHEHEH'S PRESENTATION AND WE 62 00:02:24,960 --> 00:02:28,520 CONTINUE COLLABORATING WITH HER 63 00:02:28,520 --> 00:02:31,360 AND ASSISTANT SECRETARY 64 00:02:31,360 --> 00:02:31,640 WILLIAMS. 65 00:02:31,640 --> 00:02:33,480 SHE SHARED UPDATES BUT IF YOU'D 66 00:02:33,480 --> 00:02:35,600 LIKE TO TAKE A FEW MOMENT TO 67 00:02:35,600 --> 00:02:39,040 INTRODUCE YOURSELF AGAIN, TARYN, 68 00:02:39,040 --> 00:02:39,760 THAT'D BE GREAT. 69 00:02:39,760 --> 00:02:40,160 HI. 70 00:02:40,160 --> 00:02:47,560 >> HI, GOOD MORNING, EVERYONE. 71 00:02:47,560 --> 00:02:48,680 I'M GLAD TO BE WITH YOU AGAIN 72 00:02:48,680 --> 00:02:49,760 THIS MORNING AS YOU HEARD. 73 00:02:49,760 --> 00:02:53,160 I'M THE ASSISTANT SECRETARY OF 74 00:02:53,160 --> 00:02:54,760 THE OFFICE OF DISABILITY 75 00:02:54,760 --> 00:02:56,600 EMPLOYMENT POLICY AND I AM 76 00:02:56,600 --> 00:03:00,440 LOOKING FORWARDS TO OUR 77 00:03:00,440 --> 00:03:02,720 CONTINUED PARTICIPATION ON THE 78 00:03:02,720 --> 00:03:04,000 IACC AND JOIN BY SENIOR POLICY 79 00:03:04,000 --> 00:03:05,520 ADVISER FROM OUR OFFICE, 80 00:03:05,520 --> 00:03:10,800 DR. SCOTT ROBINSON WHO HAS BEEN 81 00:03:10,800 --> 00:03:12,760 ACTIVELY INVOLVED FOR MANY 82 00:03:12,760 --> 00:03:12,960 YEARS. 83 00:03:12,960 --> 00:03:13,840 >> WE KNOW SCOTT WELL AND THANK 84 00:03:13,840 --> 00:03:18,040 YOU BOTH FOR JOINING US. 85 00:03:18,040 --> 00:03:21,520 LASTLY WE HAVE A DEPARTURE. 86 00:03:21,520 --> 00:03:27,560 DR. PARADIZ WITH AUTISM SPEAKS 87 00:03:27,560 --> 00:03:29,280 AND A PUBLIC MEMBER AND RETIRED 88 00:03:29,280 --> 00:03:30,840 AND STEP DOWN AS PART OF THAT 89 00:03:30,840 --> 00:03:32,520 RETIREMENT. 90 00:03:32,520 --> 00:03:37,600 WE EXPECT THAT THE SECRETARY OF 91 00:03:37,600 --> 00:03:45,640 HHS SECRETARY BECERRA WILL 92 00:03:45,640 --> 00:03:48,680 NOMINA 93 00:03:48,680 --> 00:03:49,200 NOMINA 94 00:03:49,200 --> 00:03:52,480 NOMINATE SOMEONE RELATIVE SOON 95 00:03:52,480 --> 00:03:53,880 AND HOPE BY THE NEXT MEETING 96 00:03:53,880 --> 00:03:55,760 WE'LL HAVE AN ADDITIONAL MEMBER 97 00:03:55,760 --> 00:03:58,880 TO REPLACE DR. PARADIZ. 98 00:03:58,880 --> 00:04:00,320 STAY TUNED FOR UPDATES IN THE 99 00:04:00,320 --> 00:04:00,880 FUTURE. 100 00:04:00,880 --> 00:04:03,040 TODAY'S PROGRAM IS EXCITING. 101 00:04:03,040 --> 00:04:07,560 I'M PLEASED WE'LL HAVE 102 00:04:07,560 --> 00:04:09,000 PRESENTATIONS FROM THE SOCIAL 103 00:04:09,000 --> 00:04:10,680 SECURITY ADMINISTRATION ABOUT 104 00:04:10,680 --> 00:04:11,280 THE PROGRAMS AND THAT'S 105 00:04:11,280 --> 00:04:14,240 INTERESTING TO HEAR AND FROM THE 106 00:04:14,240 --> 00:04:15,960 CDC ABOUT THE AUTISM PREVALENCE 107 00:04:15,960 --> 00:04:18,920 DATA RELEASES WHICH I KNOW IS OF 108 00:04:18,920 --> 00:04:19,960 INTEREST TO MANY ON THE 109 00:04:19,960 --> 00:04:21,520 COMMITTEE AND TO MANY OF THE 110 00:04:21,520 --> 00:04:25,440 PUBLIC TUNING IN TODAY. 111 00:04:25,440 --> 00:04:29,320 AND FROM DR. CATHY LORD, ONE OF 112 00:04:29,320 --> 00:04:31,960 OUR ESTEEMED AUTISM RESEARCHERS 113 00:04:31,960 --> 00:04:39,360 AT NIMH AND FUNDED BY NIMH AND 114 00:04:39,360 --> 00:04:40,640 OTHER INSTITUTES ACROSS NIH. 115 00:04:40,640 --> 00:04:43,680 SHE'LL BE REPRESENTING THE 116 00:04:43,680 --> 00:04:44,960 LANCET COMMISSION ON THE FUTURE 117 00:04:44,960 --> 00:04:47,480 OF CARE AND PEOPLE ON THE AUTISM 118 00:04:47,480 --> 00:04:47,760 SPECTRUM. 119 00:04:47,760 --> 00:04:50,960 AS MANY KNOW THE LANCET 120 00:04:50,960 --> 00:04:51,720 COMMISSION RECENTLY PUBLISHED 121 00:04:51,720 --> 00:04:54,800 ITS REPORT PULL OF 122 00:04:54,800 --> 00:04:56,360 RECOMMENDATIONS AND -- FULL OF 123 00:04:56,360 --> 00:04:59,480 RECOMMENDATIONS. 124 00:04:59,480 --> 00:05:01,520 WE'LL GLAD TO BE HEARING FROM 125 00:05:01,520 --> 00:05:03,040 DR. LORD AND DISCUSS THE 126 00:05:03,040 --> 00:05:03,600 RECOMMENDATIONS AFTER THE 127 00:05:03,600 --> 00:05:03,960 PRESENTATION. 128 00:05:03,960 --> 00:05:06,560 WE HAVE A LOT OF WORK TO DO AS A 129 00:05:06,560 --> 00:05:09,520 COMMITTEE ON TWO OF OUR KEY 130 00:05:09,520 --> 00:05:11,000 ASSIGNMENTS, REFINING AND 131 00:05:11,000 --> 00:05:12,880 REVIVING THE IACC EVACUATE PLAN 132 00:05:12,880 --> 00:05:24,760 AND THE SUMMARY OF ADVANCES AND 133 00:05:24,760 --> 00:05:26,480 DR. DANIELS WILL LEAD US THROUGH 134 00:05:26,480 --> 00:05:27,680 THOSE WORK ITEMS AT DIFFERENT 135 00:05:27,680 --> 00:05:29,520 POINTS AND AS USUAL WE'LL HAVE 136 00:05:29,520 --> 00:05:30,960 THE OPPORTUNITY FOR PUBLIC 137 00:05:30,960 --> 00:05:33,320 COMMENTS AND THE OPPORTUNITY TO 138 00:05:33,320 --> 00:05:33,880 DISCUSS THOSE COMMENTS AS A 139 00:05:33,880 --> 00:05:52,560 COMBROUP. 140 00:05:52,560 --> 00:05:53,520 141 00:05:54,800 --> 00:05:57,560 >> THOSE IN ZOOM CAN SEE THE 142 00:05:57,560 --> 00:06:01,920 ATTENDANTS AND WHEN WE'RE HAVING 143 00:06:01,920 --> 00:06:03,200 DISCUSSION PERIODS PEOPLE CAN 144 00:06:03,200 --> 00:06:06,280 FEEL FREE TO TURN ON CAMERAS. 145 00:06:06,280 --> 00:06:07,640 FOR SOME PEOPLE ZOOM IS 146 00:06:07,640 --> 00:06:08,760 STRESSFUL AND IF THAT'S THE CASE 147 00:06:08,760 --> 00:06:10,680 YOU CAN LEAVE IT OFF BUT WE 148 00:06:10,680 --> 00:06:12,960 STILL WELCOME YOUR COMMENTS AND 149 00:06:12,960 --> 00:06:15,400 YOU CAN PRODE THOSE COMMENTS 150 00:06:15,400 --> 00:06:16,960 VERBALLY OR IF YOU NEED TO DO SO 151 00:06:16,960 --> 00:06:19,560 IN WRITING USE THE CHAT TO 152 00:06:19,560 --> 00:06:22,800 CONTACT THE CONTRACTOR STAFF WE 153 00:06:22,800 --> 00:06:25,160 HAVE TO HELP WITH WRITTEN 154 00:06:25,160 --> 00:06:26,680 COMMENTS THAT MAYBE NEEDED AS A 155 00:06:26,680 --> 00:06:27,760 DISABILITY ACCOMMODATION. 156 00:06:27,760 --> 00:06:29,640 I'M ALSO GOING TO LET YOU KNOW 157 00:06:29,640 --> 00:06:32,240 TODAY WE'RE GOING TO TRY FOR THE 158 00:06:32,240 --> 00:06:33,320 FIRST TIME USING ZOOM POLLING TO 159 00:06:33,320 --> 00:06:36,160 GET OPINIONS FROM THE COMMITTEE 160 00:06:36,160 --> 00:06:39,840 BECAUSE IT'S SUCH A LARGE 161 00:06:39,840 --> 00:06:41,160 COMMITTEE SOMETIMES IT'S 162 00:06:41,160 --> 00:06:42,840 DIFFICULT TO GAUGE PEOPLE'S 163 00:06:42,840 --> 00:06:43,960 OPINIONS JUST BY RAISING HANDS 164 00:06:43,960 --> 00:06:48,560 BECAUSE WE'RE A BIG GROUP. 165 00:06:48,560 --> 00:06:49,840 WE'LL TRY THE ZOOM POLLING AND 166 00:06:49,840 --> 00:06:50,920 FOR THOSE IN THE AUDIENCE, YOU 167 00:06:50,920 --> 00:06:55,000 WON'T BE ABLE TO SEE THE ZOOM 168 00:06:55,000 --> 00:06:56,760 POLLS PEOPLE IN THE ACTUAL ZOOM 169 00:06:56,760 --> 00:06:58,960 ROOM WILL BE ABLE TO SEE THEM 170 00:06:58,960 --> 00:07:01,040 BUT WE'LL DESCRIBE THEM FOR YOU 171 00:07:01,040 --> 00:07:02,360 AND AFTER THE FACT WE'LL ADD 172 00:07:02,360 --> 00:07:08,280 THEM SO PEOPLE CAN SEE WHAT THE 173 00:07:08,280 --> 00:07:13,480 ZOOM POLLS LOOKED LIKE SO 174 00:07:13,480 --> 00:07:16,280 MEMBERS OF THE OR ALTERNATES 175 00:07:16,280 --> 00:07:18,960 REPRESENTING SOMEONE NOT HERE, 176 00:07:18,960 --> 00:07:28,200 YOU'RE WELCOME TO PARTICIPATE IN 177 00:07:28,200 --> 00:07:28,400 POLLS. 178 00:07:28,400 --> 00:07:32,640 WITH THAT, LET'S MOVE ON TO THE 179 00:07:32,640 --> 00:07:33,320 APPROVAL OF THE MINUTES 180 00:07:33,320 --> 00:07:34,640 EVERYBODY HAS ACCESS TO THE 181 00:07:34,640 --> 00:07:36,320 OCTOBER DRAFT MINUTES ONLINE AND 182 00:07:36,320 --> 00:07:37,120 THE INSTRUCTIONS WERE SENT TO 183 00:07:37,120 --> 00:07:42,960 THE CHAIR IN TERMS OF HOW TO 184 00:07:42,960 --> 00:07:45,520 ACCESS OUR MATERIALS WE HAVE 185 00:07:45,520 --> 00:07:47,400 RECEIVED A COUPLE CORRECTIONS 186 00:07:47,400 --> 00:07:48,400 FROM JALEN PRINCE. 187 00:07:48,400 --> 00:07:49,640 I DON'T KNOW IF THERE'S OTHER 188 00:07:49,640 --> 00:07:51,920 CORRECTIONS BUT CAN WE HAVE A 189 00:07:51,920 --> 00:07:54,120 MEGS TO ACCEPT THE MINUTES? 190 00:07:54,120 --> 00:07:55,840 -- A MOTION TO ACCEPT THE 191 00:07:55,840 --> 00:07:57,120 MINUTES WITH THE CORRECTIONS 192 00:07:57,120 --> 00:07:58,120 RECEIVED SO FAR? 193 00:07:58,120 --> 00:08:01,240 >> I MOVE TO ACCEPT THE MINUTES. 194 00:08:01,240 --> 00:08:03,080 THIS IS SUSAN RIVERA. 195 00:08:03,080 --> 00:08:03,760 >> THANK YOU. 196 00:08:03,760 --> 00:08:06,200 CAN WE IS A SECOND? 197 00:08:06,200 --> 00:08:06,960 >> I SECOND. 198 00:08:06,960 --> 00:08:07,520 >> GREAT. 199 00:08:07,520 --> 00:08:08,960 ANY DISCUSSION TA WE NEED TO 200 00:08:08,960 --> 00:08:09,960 HAVE BEFORE WE WOULD BE ABLE TO 201 00:08:09,960 --> 00:08:18,160 ACCESS TE MINUTES? 202 00:08:18,160 --> 00:08:19,320 -- THE MINUTES. 203 00:08:19,320 --> 00:08:20,680 I'M NOT SEEING A RAISED HAND. 204 00:08:20,680 --> 00:08:22,160 ALL IN FAVOR CAN YOU HIT THE 205 00:08:22,160 --> 00:08:42,200 RAISED HAND BUTTON? 206 00:08:42,200 --> 00:08:44,920 >> SUSAN, WHERE'S THE RAISED 207 00:08:44,920 --> 00:08:49,000 HAND BUTTON? 208 00:08:49,000 --> 00:08:53,880 >> I SHOULD HAVE DONE THAT. 209 00:08:53,880 --> 00:08:58,280 AND YOU HIT REACTIONS IN THE 210 00:08:58,280 --> 00:08:58,560 BOTTOM. 211 00:08:58,560 --> 00:09:00,320 >> THANK YOU, WE'LL DO IT AS A 212 00:09:00,320 --> 00:09:01,560 ROLL CALL NEXT TIME. 213 00:09:01,560 --> 00:09:04,400 THAT WILL PROBABLY MAKE IT 214 00:09:04,400 --> 00:09:04,760 EASIER. 215 00:09:04,760 --> 00:09:09,000 BUT IT LOOKS LIKE I HAVE A 216 00:09:09,000 --> 00:09:11,520 MAJORITY OF THE COMMITTEE VOTING 217 00:09:11,520 --> 00:09:12,200 TO ACCEPT THE MINUTES. 218 00:09:12,200 --> 00:09:15,160 ALL RIGHT, YOU CAN PUT YOUR 219 00:09:15,160 --> 00:09:15,600 HANDS DOWN. 220 00:09:15,600 --> 00:09:20,240 IS THERE AN OPPOSED TO ACCEPTING 221 00:09:20,240 --> 00:09:21,080 THE MINUTES AND IF SO RAISE YOUR 222 00:09:21,080 --> 00:09:25,320 HAND ON ZOOM. 223 00:09:25,320 --> 00:09:25,560 >> OKAY. 224 00:09:25,560 --> 00:09:30,960 THAT'S GOOD. 225 00:09:30,960 --> 00:09:32,360 CAN EVERYONE PUT YOUR HAND DOWN 226 00:09:32,360 --> 00:09:33,520 IF YOU WERE IN FAVOR? 227 00:09:33,520 --> 00:09:43,920 NOW WE'RE TAKING OPPOSED. 228 00:09:43,920 --> 00:09:47,160 SO I SEE -- AND LARRY I'M 229 00:09:47,160 --> 00:09:48,760 ASSUMING YOU'RE NOT OPPOSED BUT 230 00:09:48,760 --> 00:09:50,280 PUTTING DOWN YOUR HAND. 231 00:09:50,280 --> 00:09:52,840 WE DON'T HAVE ANYONE OPPOSED? 232 00:09:52,840 --> 00:09:54,960 IS THERE ANYONE WHO WANTS TO 233 00:09:54,960 --> 00:09:58,360 ABSTAIN? 234 00:09:58,360 --> 00:10:00,800 I HAVE ONE OR TWO PEOPLE WHO 235 00:10:00,800 --> 00:10:02,040 WANT TO ABSTAIN. 236 00:10:02,040 --> 00:10:04,080 ALL RIGHT. 237 00:10:04,080 --> 00:10:05,920 SO WITH THE MAJORITY THIS PASSES 238 00:10:05,920 --> 00:10:08,200 SO WE'LL ACCEPT THE MINUTES WITH 239 00:10:08,200 --> 00:10:09,560 THE COMMENTS THAT JALEN PRINCE 240 00:10:09,560 --> 00:10:11,320 SENT IN AND IF ANYONE ELSE HAS 241 00:10:11,320 --> 00:10:13,040 ANY LAST-MINUTE CORRECTIONS YOU 242 00:10:13,040 --> 00:10:15,320 CAN FEEL FREE TO JUST E-MAIL US 243 00:10:15,320 --> 00:10:16,280 THOSE CORRECTIONS AND WE'LL MAKE 244 00:10:16,280 --> 00:10:17,960 SURE THEY GET IN AND WE'LL POST 245 00:10:17,960 --> 00:10:18,640 THE MINUTES ON THE WEBSITE AFTER 246 00:10:18,640 --> 00:10:23,120 THE MEETING. 247 00:10:23,120 --> 00:10:23,680 THANK YOU VERY MUCH. 248 00:10:23,680 --> 00:10:25,480 I'LL TURN IT BACK OVER TO JOSH. 249 00:10:25,480 --> 00:10:32,680 >> THANKS, SUSAN FOR 250 00:10:32,680 --> 00:10:33,960 PARTICIPATING IN THAT IMPORTANT 251 00:10:33,960 --> 00:10:36,080 FORMALITY AND GET THE RECORD OF 252 00:10:36,080 --> 00:10:37,040 PREVIOUS MEETINGS CORRECT AND 253 00:10:37,040 --> 00:10:42,880 ALL THE MEETINGS ARE POFLT -- 254 00:10:42,880 --> 00:10:43,960 POSTED ON THE WEBSITE. 255 00:10:43,960 --> 00:10:46,560 IT'S MY FAVOR TO GET TE 256 00:10:46,560 --> 00:10:47,960 PROGRAMMATIC ASPECT OF THE 257 00:10:47,960 --> 00:10:48,960 MEETING UNDERWAY AND IT'S MY 258 00:10:48,960 --> 00:10:50,960 PLEASURE TO INTRODUCE 259 00:10:50,960 --> 00:10:57,160 DR. JEFFERY HEMMETER THE ACTING 260 00:10:57,160 --> 00:10:58,560 DEPUTY ASSOCIATE DIRECTOR IN THE 261 00:10:58,560 --> 00:11:00,120 OFFICE OF RETIREMENT AND 262 00:11:00,120 --> 00:11:00,760 DISABILITY POLICY AT THE SOCIAL 263 00:11:00,760 --> 00:11:03,240 SECURITY ADMINISTRATION. 264 00:11:03,240 --> 00:11:07,920 DR. HEMMETER IS AN ECONOMIST AND 265 00:11:07,920 --> 00:11:09,520 HELPS OVERSEE RESEARCH AND 266 00:11:09,520 --> 00:11:10,840 EVALUATION AND OTHER POLICIES 267 00:11:10,840 --> 00:11:13,160 RELATED TO DISABILITY AND RETURN 268 00:11:13,160 --> 00:11:15,040 TO WORK. 269 00:11:15,040 --> 00:11:17,440 WE'RE REALLY EXCITED TO HEAR HIS 270 00:11:17,440 --> 00:11:18,760 PRESENTATION ON THE SOCIAL 271 00:11:18,760 --> 00:11:21,600 ADMINISTRATION AND THE AUTISM 272 00:11:21,600 --> 00:11:25,600 SPECTRUM DISABILITY INSURANCE 273 00:11:25,600 --> 00:11:26,720 SUPPLEMENTAL SECURITY INCOME AND 274 00:11:26,720 --> 00:11:27,240 WORK. 275 00:11:27,240 --> 00:11:29,360 THANK YOU FOR JOINING US TODAY. 276 00:11:29,360 --> 00:11:30,960 REALLY APPRECIATE IT. 277 00:11:30,960 --> 00:11:32,520 >> THANK YOU AND THANKS TO 278 00:11:32,520 --> 00:11:35,760 DR. DANIELS ALSO FOR INVITING ME 279 00:11:35,760 --> 00:11:39,040 TO SPEAK WITH YOU ALL TODAY ON 280 00:11:39,040 --> 00:11:39,760 THE PROGRAM AND POLICY. 281 00:11:39,760 --> 00:11:43,040 TE GOAL IF THE TIME I HAVE IS TO 282 00:11:43,040 --> 00:11:45,760 SHARE WHAT SSA IS AND DOES AND 283 00:11:45,760 --> 00:11:49,520 DISCUSS HOW THE POLICIES ARE 284 00:11:49,520 --> 00:11:50,360 RELATED TO AUTISM. 285 00:11:50,360 --> 00:11:52,360 THE PROGRAMS ARE VAST AND 286 00:11:52,360 --> 00:11:56,480 COMPLEX AND CAN'T COVER THE 287 00:11:56,480 --> 00:11:59,960 NOOKS AND CRANNIES OF THE 288 00:11:59,960 --> 00:12:00,200 PROGRAM. 289 00:12:00,200 --> 00:12:04,680 IF I USE IMPROPER TERMINOLOGY I 290 00:12:04,680 --> 00:12:06,160 APOLOGIZE UP FRONT AND WILL 291 00:12:06,160 --> 00:12:09,560 TOUCH UPON THE CURRENT 292 00:12:09,560 --> 00:12:12,200 DEVELOPMENTS WITH THE SOCIAL 293 00:12:12,200 --> 00:12:13,360 SECURITY'S CURRENT POSTURE 294 00:12:13,360 --> 00:12:15,480 TOWARDS THE PUBLIC AND COVID BUT 295 00:12:15,480 --> 00:12:18,960 I WILL NOT BE SAYING ANYTHING 296 00:12:18,960 --> 00:12:20,520 NOT ALREADY PUBLIC JUST BECAUSE 297 00:12:20,520 --> 00:12:22,160 THERE ARE ONGOING NEGOTIATIONS 298 00:12:22,160 --> 00:12:26,560 AND THING GOING ON OF THAT 299 00:12:26,560 --> 00:12:27,400 NATURE. 300 00:12:27,400 --> 00:12:28,800 AND ANYTHING I SAY IS NOT 301 00:12:28,800 --> 00:12:30,360 NECESSARILY THE OPINION OF THE 302 00:12:30,360 --> 00:12:31,200 SOCIAL SECURITY ADMINISTRATION 303 00:12:31,200 --> 00:12:35,520 OR THE FEDERAL GOVERNMENT. 304 00:12:35,520 --> 00:12:38,200 I WANT TO START BY HIGHLIGHTING 305 00:12:38,200 --> 00:12:39,640 IT'S AN INDEPENDENT FEDERAL 306 00:12:39,640 --> 00:12:39,920 AGENCY. 307 00:12:39,920 --> 00:12:41,800 IT'S NOT PART OF HHS, LABOR OR 308 00:12:41,800 --> 00:12:42,760 ANOTHER DEPARTMENT. 309 00:12:42,760 --> 00:12:46,000 WE HAVE ABOUT 60,000 EMPLOYEES 310 00:12:46,000 --> 00:12:47,560 AND MOST PROVIDE DIRECT SERVICE 311 00:12:47,560 --> 00:12:51,880 TO CLAIMANTS AND BENEFICIARIES 312 00:12:51,880 --> 00:12:53,520 THROUGH IT 1500 FIELD OFFICES 313 00:12:53,520 --> 00:12:54,960 AND PAYMENT CENTERS AND 314 00:12:54,960 --> 00:12:57,040 TELESERVICE CENTERS. 315 00:12:57,040 --> 00:13:02,360 IN ADDITION, SSA CONTRACTS WITH 316 00:13:02,360 --> 00:13:04,120 EVERY STATE'S SERVICE AND 317 00:13:04,120 --> 00:13:06,160 RESPONSIBLE FOR MAKING THE FIRST 318 00:13:06,160 --> 00:13:06,760 DISABILITY DETERMINATION FOR ANY 319 00:13:06,760 --> 00:13:13,080 CLAIMS WE RECEIVE. 320 00:13:13,080 --> 00:13:14,640 THERE'S TWO PRIMARY PROGRAMS. 321 00:13:14,640 --> 00:13:18,960 THE OLD AGE SURVIVORS AND 322 00:13:18,960 --> 00:13:20,240 DISABILITY INSURANCE PROGRAM 323 00:13:20,240 --> 00:13:23,560 REFERRED TO AS SOCIAL SECURITY 324 00:13:23,560 --> 00:13:25,120 AND THE SUPPLEMENTAL SOCIAL 325 00:13:25,120 --> 00:13:30,400 SECURITY PROGRAM OR SSI AND IT'S 326 00:13:30,400 --> 00:13:34,240 SPLIT FOR ACCOUNTING PURPOSES. 327 00:13:34,240 --> 00:13:39,240 I'LL PROBABLY REFER TO DI AND 328 00:13:39,240 --> 00:13:47,800 SSI AND DI PAYS OUT 14 -- 1 DID 329 00:13:48,680 --> 00:13:57,640 1 44 BILLION AND IT'S BASED ON 330 00:13:57,640 --> 00:14:01,000 EARNINGS HISTORY AND AUXILIARIES 331 00:14:01,000 --> 00:14:03,920 AND DEPENDENTS AS DISABLED ADULT 332 00:14:03,920 --> 00:14:06,160 CHILDREN OR WIDOWERS DEPENDING 333 00:14:06,160 --> 00:14:07,400 ON WHAT THE PARTICULAR ROLES 334 00:14:07,400 --> 00:14:07,760 ARE. 335 00:14:07,760 --> 00:14:12,720 I'M NOT GOING TO GET INTO ALL 336 00:14:12,720 --> 00:14:14,280 THAT BUT THE THREE MAIN 337 00:14:14,280 --> 00:14:17,320 DISABILITY CATEGORIES IN THE 338 00:14:17,320 --> 00:14:17,560 PROGRAM. 339 00:14:17,560 --> 00:14:21,960 THE SSI PROGRAM PAYS OUT $60 340 00:14:21,960 --> 00:14:23,800 BILLION AND CHILDREN AND ADULTS 341 00:14:23,800 --> 00:14:25,080 ARE REQUIRED TO HAVE A 342 00:14:25,080 --> 00:14:27,160 DISABILITY AND ELDERLY ARE NOT 343 00:14:27,160 --> 00:14:28,360 BUT THERE ARE SIGNIFICANT 344 00:14:28,360 --> 00:14:33,400 DIFFERENCES BETWEEN THE PROGRAMS 345 00:14:33,400 --> 00:14:36,800 AND I WILL GO INTO THAT LATER. 346 00:14:36,800 --> 00:14:40,000 I WANTED TO GIVE YOU BACKGROUND 347 00:14:40,000 --> 00:14:42,360 ABOUT THE WORK LOADS WITH THE 348 00:14:42,360 --> 00:14:44,640 60,000 PEOPLE DO. 349 00:14:44,640 --> 00:14:53,960 SO SSA FIELDED 2.5 MILLION 350 00:14:53,960 --> 00:14:57,560 CLAIMS AND IT TAKES ABOUT 171 351 00:14:57,560 --> 00:15:00,120 DAYS TO ADJUDICATE. 352 00:15:00,120 --> 00:15:05,040 IF AN INDIVIDUAL DOES NOT AGREE 353 00:15:05,040 --> 00:15:11,960 WITH AN INITIAL DENIAL CAN 354 00:15:11,960 --> 00:15:14,440 APPEAL THAT AND USUALLY THE 355 00:15:14,440 --> 00:15:16,120 HEARINGS TAKE 310 DAYS ON 356 00:15:16,120 --> 00:15:16,800 AVERAGE. 357 00:15:16,800 --> 00:15:18,280 IF A CLAIM STILL DOESN'T AGREE 358 00:15:18,280 --> 00:15:21,440 THE CASE CAN BE APPEALED TO THE 359 00:15:21,440 --> 00:15:22,960 APPEALS COUNCIL AND FEDERAL 360 00:15:22,960 --> 00:15:23,640 COURT AND SUPREME COURT. 361 00:15:23,640 --> 00:15:29,520 IN ADDITION TO THAT WORK, 362 00:15:29,520 --> 00:15:33,000 THERE'S ABOUT 2.36 MILLION CALLS 363 00:15:33,000 --> 00:15:35,000 AND REVIEWS AND INCLUDING ABOUT 364 00:15:35,000 --> 00:15:39,280 500,000 FULL MEDICAL REVIEWS AND 365 00:15:39,280 --> 00:15:43,000 OVER 2 MILLION NON-MEDICAL 366 00:15:43,000 --> 00:15:44,280 REVIEWS TO ENSURE PEOPLE ARE 367 00:15:44,280 --> 00:15:46,160 STILL ELIGIBLE FOR THE PROGRAM 368 00:15:46,160 --> 00:15:50,320 AFTER THE INITIAL DECISION BUT 369 00:15:50,320 --> 00:15:51,360 THERE'S MORE. 370 00:15:51,360 --> 00:15:56,240 THERE'S OASI CLAIMS AND 371 00:15:56,240 --> 00:15:56,840 ASSIGNING OF SOCIAL SECURITY 372 00:15:56,840 --> 00:15:58,840 NUMBERS AN MEDICAID AND SNAP 373 00:15:58,840 --> 00:16:00,960 APPLICATIONS AND TAKING IN DEATH 374 00:16:00,960 --> 00:16:03,640 REPORTS AND OTHER WORK LOADS. 375 00:16:03,640 --> 00:16:06,680 ALL THAT TO SAY SSA HAS A 376 00:16:06,680 --> 00:16:07,560 SIGNIFICANT WORK LOAD FROM BIRTH 377 00:16:07,560 --> 00:16:13,520 TO DEATH. 378 00:16:13,520 --> 00:16:16,560 WHEN YOU FILE AN APPLICATION FOR 379 00:16:16,560 --> 00:16:18,960 DISABILITY BENEFITS WE ALWAYS 380 00:16:18,960 --> 00:16:21,240 CHECK ELIGIBILITY WITH DI AND 381 00:16:21,240 --> 00:16:22,800 SSI AND SAME REQUIREMENTS BUT 382 00:16:22,800 --> 00:16:26,080 THE NON-MEDICAL REQUIREMENTS 383 00:16:26,080 --> 00:16:26,320 DIFFER. 384 00:16:26,320 --> 00:16:28,880 THIS IS THE MAIN DIFFERENCES 385 00:16:28,880 --> 00:16:29,520 BETWEEN TE PROGRAMS. 386 00:16:29,520 --> 00:16:31,640 THE DI PAYMENTS COME FROM THE 387 00:16:31,640 --> 00:16:35,480 DISABILITY INSURANCE TRUST FUND 388 00:16:35,480 --> 00:16:37,160 AND ARE ARE BASED ON PAST 389 00:16:37,160 --> 00:16:38,440 EARNINGS OF THE INDIVIDUAL OR 390 00:16:38,440 --> 00:16:40,760 THE PERSON THEY WERE DEPENDENT 391 00:16:40,760 --> 00:16:44,800 ON AND FUNDED THROUGH FICA 392 00:16:44,800 --> 00:16:45,480 CONTRIBUTIONS. 393 00:16:45,480 --> 00:16:49,040 IT'S A SOCIAL INSURANCE PROGRAM. 394 00:16:49,040 --> 00:16:51,600 SSI COME FROM THE GENERAL 395 00:16:51,600 --> 00:16:53,560 TREASURE AND A NEEDS-BASED 396 00:16:53,560 --> 00:16:55,840 PUBLIC ASSISTANCE PROGRAM. 397 00:16:55,840 --> 00:16:57,720 THEY PAY PEOPLE WHO CANNOT WORK 398 00:16:57,720 --> 00:16:59,160 REGARDLESS OF RESOURCES AND 399 00:16:59,160 --> 00:17:02,680 OTHER INCOME AND SSI HAS 400 00:17:02,680 --> 00:17:07,760 SIGNIFICANT LIMIT ON RESOURCES 401 00:17:07,760 --> 00:17:09,440 AND INCOME I'LL TALK ABOUT. 402 00:17:09,440 --> 00:17:11,960 THIS SLIDE SHOWS THE DIFFERENT 403 00:17:11,960 --> 00:17:12,760 STEPS IN THE DISABILITY 404 00:17:12,760 --> 00:17:14,160 DETERMINATION PROCESS. 405 00:17:14,160 --> 00:17:16,760 I WANT TO NOTE THAT FINANCIAL 406 00:17:16,760 --> 00:17:18,160 ELIGIBILITY SUCH AS ASSET LEVEL 407 00:17:18,160 --> 00:17:27,480 FOR SSI OR STATUS LEVEL ARE KUN 408 00:17:27,480 --> 00:17:30,080 BY A FIELD OFFICE AND THERE'S A 409 00:17:30,080 --> 00:17:30,960 THREE STEP PROPOSE FOR 410 00:17:30,960 --> 00:17:35,360 QUALIFYING AND FOR ADULTS FIVE 411 00:17:35,360 --> 00:17:36,200 STEP PROCESSES. 412 00:17:36,200 --> 00:17:38,200 POR BOTH CHILDREN AND ADULT THE 413 00:17:38,200 --> 00:17:40,600 FIRST STEP IS JUST CHECK TO SEE 414 00:17:40,600 --> 00:17:44,760 IF THEY HAVE EARNINGS ABOVE 415 00:17:44,760 --> 00:17:48,600 WHAT'S CALLED THE SUBSTANTIAL 416 00:17:48,600 --> 00:17:51,040 GAINS ACTIVITY LEVEL AND THE 417 00:17:51,040 --> 00:17:53,600 SECOND STEP IS SEVERE 418 00:17:53,600 --> 00:17:54,880 IMPAIRMENT. 419 00:17:54,880 --> 00:17:58,960 FOR CONCERN THE THIRD STEP IS TO 420 00:17:58,960 --> 00:18:00,320 DETERMINE IF IT MEETS THE 421 00:18:00,320 --> 00:18:01,920 MEDICAL LISTINGS. 422 00:18:01,920 --> 00:18:05,560 THERE'S A LISTING OF MEDICAL 423 00:18:05,560 --> 00:18:08,200 CONDITIONS SSA CONSIDERS SEVERE 424 00:18:08,200 --> 00:18:09,560 ENOUGH TO CAUSE FUNCTIONAL 425 00:18:09,560 --> 00:18:10,640 LIMITATIONS. 426 00:18:10,640 --> 00:18:13,200 FOR ADULTS, THE THIRD STEP IS 427 00:18:13,200 --> 00:18:15,480 SIMILAR BUT DOESN'T INCLUDE THE 428 00:18:15,480 --> 00:18:16,480 FUNCTIONAL AND EQUAL CHECK. 429 00:18:16,480 --> 00:18:19,320 IN SAID IF THE INDIVIDUAL CAN 430 00:18:19,320 --> 00:18:20,920 PERFORM PAST RELEVANT WORK AND 431 00:18:20,920 --> 00:18:24,440 THE FIFTH STEP DETERMINES IF AN 432 00:18:24,440 --> 00:18:25,720 INDIVIDUAL CAN PERFORM ANY WORK 433 00:18:25,720 --> 00:18:32,520 IN THE NATIONAL ECONOMY. 434 00:18:32,520 --> 00:18:35,760 I WANT TO RETURN TO THE 435 00:18:35,760 --> 00:18:37,520 DEFINITION OF DISABILITY AND 436 00:18:37,520 --> 00:18:43,000 THEY'RE STATUTORILY AND THEY'RE 437 00:18:43,000 --> 00:18:44,040 MORE RESTRICTIVE PERFECT OTHER 438 00:18:44,040 --> 00:18:45,520 PROGRAMS AND THERE'S 439 00:18:45,520 --> 00:18:45,800 DIFFERENCES. 440 00:18:45,800 --> 00:18:49,560 FOR ADULTS THE ONE ON TOP, IT IS 441 00:18:49,560 --> 00:18:55,040 AGAIN THE INABILITY TO DO ANY 442 00:18:55,040 --> 00:18:57,560 SUBSTANTIALLY GAINFUL ACTIVITY 443 00:18:57,560 --> 00:18:58,840 FOR IMPAIRMENT EXPECTED TO 444 00:18:58,840 --> 00:19:05,440 RESULT IN DEATH AND INTENDED TO 445 00:19:05,440 --> 00:19:09,840 BE MEDICALLY DETERMINABLE, LONG 446 00:19:09,840 --> 00:19:16,920 LASTING AND ENDING IN DEATH AND 447 00:19:16,920 --> 00:19:19,360 FOR CHILDREN INSTEAD OF 448 00:19:19,360 --> 00:19:21,760 SUBSTANTIAL COMBAN 449 00:19:25,840 --> 00:19:27,640 GAINFUL ACTIVITY MARKED BY 450 00:19:27,640 --> 00:19:27,960 LIMITATION. 451 00:19:27,960 --> 00:19:29,760 IT'S HE FUNCTIONING WE WOULD 452 00:19:29,760 --> 00:19:34,360 EXPECT WE EXPECT TO FIND ON 453 00:19:34,360 --> 00:19:35,680 STANDARDIZED TESTING SCORES LESS 454 00:19:35,680 --> 00:19:44,680 THAN THREE STANDARD DEVIATIONS 455 00:19:44,680 --> 00:19:47,080 BELOW THE MEAN AND SCORES THREE 456 00:19:47,080 --> 00:19:49,040 STANDARD DEVIATIONS BELOW THE 457 00:19:49,040 --> 00:19:56,160 MEAN. 458 00:19:56,160 --> 00:19:59,120 THE BLUE BOOK DESCRIBES TE 459 00:19:59,120 --> 00:20:00,080 PROCESS FOR HEALTH 460 00:20:00,080 --> 00:20:01,520 PROFESSIONALS. 461 00:20:01,520 --> 00:20:02,160 FORMALLY CALLED THE DISABILITY 462 00:20:02,160 --> 00:20:03,200 EVALUATION UNDER SOCIAL SECURITY 463 00:20:03,200 --> 00:20:04,800 AND THERE'S A WEB PAGE LISTED AT 464 00:20:04,800 --> 00:20:07,760 HE END OF THIS SLIDE. 465 00:20:07,760 --> 00:20:09,280 SO IT LISTS SPECIFIC CRITERIA 466 00:20:09,280 --> 00:20:12,960 UNDER WHICH CLAIMANTS CAN 467 00:20:12,960 --> 00:20:13,960 QUALIFY FOR SPECIFIC CONDITIONS. 468 00:20:13,960 --> 00:20:15,720 IT'S IMPORTANT TO NOTE THESE IT 469 00:20:15,720 --> 00:20:18,360 LISTINGS ARE JUST SHORTCUTS TO 470 00:20:18,360 --> 00:20:19,400 MAKING A DISABILITY 471 00:20:19,400 --> 00:20:19,760 DETERMINATION. 472 00:20:19,760 --> 00:20:24,240 THEY'RE NOT THE ONLY WAY QUALIFY 473 00:20:24,240 --> 00:20:24,680 FOR BENEFITS. 474 00:20:24,680 --> 00:20:26,960 THERE'S BEEN PRIOR IN MANY CASES 475 00:20:26,960 --> 00:20:29,160 THAT LEVEL OF CRITERIA HAS BEEN 476 00:20:29,160 --> 00:20:30,840 MET AND PEOPLE HAVE GENERALLY 477 00:20:30,840 --> 00:20:34,480 BEEN FOUND TO BE ELIGIBLE FOR 478 00:20:34,480 --> 00:20:36,200 BENEFITS AND CAUSES MARK AND 479 00:20:36,200 --> 00:20:40,040 SEVERE PHYSICAL LIMITATIONS OR 480 00:20:40,040 --> 00:20:41,760 REDUCTION IN SUBSTANTIAL GAIN 481 00:20:41,760 --> 00:21:00,400 ACTIVITY. 482 00:21:00,400 --> 00:21:02,560 IS THIS IS THE SUMMARY OF NON 483 00:21:02,560 --> 00:21:05,520 VERBAL COMMUNICATION AND 484 00:21:05,520 --> 00:21:06,640 SIGNIFICANTLY RESTRICTIVE 485 00:21:06,640 --> 00:21:07,800 REPETITIVE PATTERNS OF BEHAVIOR, 486 00:21:07,800 --> 00:21:10,800 INTEREST OR ACTIVITY AND IN 487 00:21:10,800 --> 00:21:13,520 ADDITION REQUIRES AN EXTREME OR 488 00:21:13,520 --> 00:21:15,760 MARK LIMITATION IN THE TWO OF 489 00:21:15,760 --> 00:21:18,160 THE FOLLOWING AREAS WHICH ARE 490 00:21:18,160 --> 00:21:20,160 UNDERSTAND, REMEMBER, INTERACT 491 00:21:20,160 --> 00:21:22,160 WITH OTHERS, CONCENTRATE PERSIST 492 00:21:22,160 --> 00:21:25,560 OR MAINTAIN PACE AND ADAPT OR 493 00:21:25,560 --> 00:21:26,960 MANAGE. 494 00:21:26,960 --> 00:21:28,000 I WANTED INCLUDE THIS BECAUSE 495 00:21:28,000 --> 00:21:31,400 THIS OR THE EQUIVALENT IS WITH 496 00:21:31,400 --> 00:21:33,480 AUTISM AND NO OTHER CONDITION 497 00:21:33,480 --> 00:21:38,480 WILL NEED TO MEDICALLY SATISFY 498 00:21:38,480 --> 00:21:42,600 TO QUALIFY FOR DI OR SSI AND 499 00:21:42,600 --> 00:21:43,760 TARGETED FOR INDIVIDUALS FACING 500 00:21:43,760 --> 00:21:46,160 THE MOST SEVERE BARRIERS. 501 00:21:46,160 --> 00:21:50,560 SSI WILL LOOK DURING THE 502 00:21:50,560 --> 00:21:55,560 DETERMINATION OR DDS WILL LOOK 503 00:21:55,560 --> 00:21:59,480 AT THE ENTIRE MEDICAL HISTORY 504 00:21:59,480 --> 00:22:02,920 AND SEEK OUT ADDITIONAL EVIDENCE 505 00:22:02,920 --> 00:22:04,960 INCLUDING AS LONG AS SOMETHING 506 00:22:04,960 --> 00:22:06,240 IS ALLEGED WE'LL TRY TO FIND 507 00:22:06,240 --> 00:22:07,960 EVIDENCE FOR IT. 508 00:22:07,960 --> 00:22:13,440 IF WE CAN'T FIND EVIDENCE IN 509 00:22:13,440 --> 00:22:16,040 MEDICAL RECORDS THERE'S 510 00:22:16,040 --> 00:22:17,320 CONSULTIVE EXAMINATIONS BECAUSE 511 00:22:17,320 --> 00:22:31,240 IT HAS TO BE MEDICALLY 512 00:22:31,240 --> 00:22:31,680 DETERMINABLE. 513 00:22:31,680 --> 00:22:34,040 THE PROCESS TAKES A WHILE AND 514 00:22:34,040 --> 00:22:35,960 WE'LL SEE WHAT HAPPENS WITH 515 00:22:35,960 --> 00:22:36,960 CHILDREN ON THIS SLIDE. 516 00:22:36,960 --> 00:22:39,640 AND I THINK FOR CHILDREN 517 00:22:39,640 --> 00:22:43,720 APPLYING FOR SSI, THREE-QUARTERS 518 00:22:43,720 --> 00:22:47,320 OF CLAIMS WITH AUTISM ARE 519 00:22:47,320 --> 00:22:49,880 ALLOWED AND 25% APPEALED FOR 520 00:22:49,880 --> 00:22:54,440 RECONSIDERATION ARE ALLOWED AND 521 00:22:54,440 --> 00:23:01,000 THE NUMBERS DROP OFF AT EACH 522 00:23:01,000 --> 00:23:01,200 LEVEL. 523 00:23:01,200 --> 00:23:05,440 FOR ADULTS IT'S DIFFERENT AND 524 00:23:05,440 --> 00:23:09,440 THEY'RE SUBJECT TO DATA ISSUES 525 00:23:09,440 --> 00:23:14,680 IF SOMEONE CAN'T CLAIM AUTISM AS 526 00:23:14,680 --> 00:23:18,400 AN IMPAIRMENT BUT HAVE AND ON 527 00:23:18,400 --> 00:23:20,360 THE SPECTRUM THEY WOULD NOT BE 528 00:23:20,360 --> 00:23:24,160 ON THIS IT NUMBERS. 529 00:23:24,160 --> 00:23:27,440 THE NEXT NUMBERS ARE ADULT 530 00:23:27,440 --> 00:23:27,680 NUMBERS. 531 00:23:27,680 --> 00:23:36,920 THE BIG POINT IS NUMBERS ARE 532 00:23:36,920 --> 00:23:44,040 QUALITATIVELILY SIMILAR. 533 00:23:44,040 --> 00:23:46,080 AND THEY'RE CAPPED AT A RATE 534 00:23:46,080 --> 00:23:51,240 $841 FOR INDIVIDUALS AND $1,261 535 00:23:51,240 --> 00:23:53,960 FOR A COUPLE AND REDUCED FOR A 536 00:23:53,960 --> 00:23:58,400 DOLLAR OVER EVERY: -- 537 00:24:05,520 --> 00:24:09,760 EVERY DOLLAR AND THOSE 538 00:24:09,760 --> 00:24:11,840 PARTICULAR LEVELS HAVE NOT 539 00:24:11,840 --> 00:24:13,000 CHANGED SINCE 1989. 540 00:24:13,000 --> 00:24:15,400 THAT IS A VERY LONG TIME AND 541 00:24:15,400 --> 00:24:17,800 THEY'RE VERY LOW LEVELS. 542 00:24:17,800 --> 00:24:25,480 BUT THAT IS TE LEGISLATION. 543 00:24:25,480 --> 00:24:28,720 THERE'S LOTS OF EXCLUSIONS WE 544 00:24:28,720 --> 00:24:33,400 DON'T COUNT A PERSON'S HOME OR 545 00:24:33,400 --> 00:24:34,920 FIRST CAR OR PRIMARY RESIDENCE 546 00:24:34,920 --> 00:24:36,560 BUT THERE'S RULES ABOUT 547 00:24:36,560 --> 00:24:38,120 ACCOUNTING THE INCOME AVAILABLE 548 00:24:38,120 --> 00:24:39,800 FROM OTHER PEOPLE. 549 00:24:39,800 --> 00:24:42,320 SO A SPOUSE OR PARENT, FOR 550 00:24:42,320 --> 00:24:47,400 EXAMPLE, WE WILL COUNT SOME 551 00:24:47,400 --> 00:24:50,680 PORTION OF TIR INCOME AND 552 00:24:50,680 --> 00:24:52,000 THERE'S INCOME AND SUPPORT OF 553 00:24:52,000 --> 00:24:52,680 MAINTENANCE AND PEOPLE THEY LIVE 554 00:24:52,680 --> 00:24:57,520 WITH AND THE LIKE. 555 00:24:57,520 --> 00:24:58,720 AND BASICALLY EVERYTHING ON THE 556 00:24:58,720 --> 00:25:00,640 SLIDE IS DETERMINED BY 557 00:25:00,640 --> 00:25:02,480 LEGISLATION NOT BY SSA. 558 00:25:02,480 --> 00:25:04,600 THERE'S REGULATIONS TO ADJUST 559 00:25:04,600 --> 00:25:05,920 THE FEDERAL BENEFIT RATE. 560 00:25:05,920 --> 00:25:07,000 OTHER THAN THAT EVERYTHING IS 561 00:25:07,000 --> 00:25:13,840 SET BY LEGISLATION. 562 00:25:13,840 --> 00:25:17,520 THE DI PROGRAM PAYS PEOPLE BASED 563 00:25:17,520 --> 00:25:19,720 ON A PRIMARY INSURANCE AMOUNT 564 00:25:19,720 --> 00:25:21,680 AND HAS PAST EARNING AND A 565 00:25:21,680 --> 00:25:23,680 COMPLEX FORM I WON'T GO INTO 566 00:25:23,680 --> 00:25:29,520 THAT MAKES IT MORE PROGRESSIVE 567 00:25:29,520 --> 00:25:31,920 IN STRUCTURE. 568 00:25:31,920 --> 00:25:34,320 THERE ARE THERE'S AUXILIARIES 569 00:25:34,320 --> 00:25:37,160 BASED ON SEASON ELSE'S ACCOUNT. 570 00:25:37,160 --> 00:25:39,440 IT'S A FAMILY BASED PAYMENT BUT 571 00:25:39,440 --> 00:25:42,520 THERE'S A FAMILY MAXIMUM. 572 00:25:42,520 --> 00:25:45,480 IN GENERAL A BENEFICIARY WILL 573 00:25:45,480 --> 00:25:46,960 RECEIVE THEIR FULL BENEFIT NO 574 00:25:46,960 --> 00:25:48,560 MATTER HOW HIGH THEIR EARNINGS 575 00:25:48,560 --> 00:25:49,720 ARE DURING THE TRIAL WORK 576 00:25:49,720 --> 00:25:50,200 PERIOD. 577 00:25:50,200 --> 00:25:52,000 THE FIRST NINE MONTHS IN A 578 00:25:52,000 --> 00:25:55,160 ROLLING 60-MONTH WINDOW WHERE 579 00:25:55,160 --> 00:25:59,720 EARNINGS ARE GREATER THAN $970 580 00:25:59,720 --> 00:26:00,520 THIS YEAR. 581 00:26:00,520 --> 00:26:02,360 ONCE THE NINE MONTHS ARE USED 582 00:26:02,360 --> 00:26:04,920 UP, THE BENEFITS ARE SUSPENDED 583 00:26:04,920 --> 00:26:09,080 AND IT'S IF THE BENEFICIARY 584 00:26:09,080 --> 00:26:12,240 PERFORMS SUBSTANTIAL GAINS 585 00:26:12,240 --> 00:26:18,760 ACTIVITY AND SGA WHILE NOT A 586 00:26:18,760 --> 00:26:23,680 DOLLAR VALUE TAKES THE 587 00:26:23,680 --> 00:26:24,800 BENEFICIARIES INTO ACCOUNT AND 588 00:26:24,800 --> 00:26:26,120 WHILE THERE'S A REGULATION THAT 589 00:26:26,120 --> 00:26:27,280 CHANGE THE LEVEL PER LEGISLATION 590 00:26:27,280 --> 00:26:29,920 THOSE ARE GENERALLY SET BY LAW. 591 00:26:29,920 --> 00:26:31,520 IF AFTER 36 MONTHS IN THE 592 00:26:31,520 --> 00:26:32,640 EXTENDED PERIOD OF ELIGIBILITY 593 00:26:32,640 --> 00:26:38,880 THE BENEFICIARY IS WORKING ABOVE 594 00:26:38,880 --> 00:26:42,000 SGA BENEFITS WILL BE TERMINATE. 595 00:26:42,000 --> 00:26:53,880 THAT'S THE GIST OF THE PROGRAM. 596 00:26:53,880 --> 00:27:04,560 THIS IT PROVIDES NUMBERS OF 597 00:27:04,560 --> 00:27:11,160 DIAGNOSE OF AUTISM AN IT'S 20% 598 00:27:11,160 --> 00:27:13,520 COMPARATIVELY 4% OF ADULTS 599 00:27:13,520 --> 00:27:18,480 RECEIVING SSI HAVE A PRIMARY 600 00:27:18,480 --> 00:27:21,520 DIAGNOSIS OF AUTISM AND IT 601 00:27:21,520 --> 00:27:23,320 VARIES BY ENTITLEMENT CATEGORY 602 00:27:23,320 --> 00:27:27,560 WITH OVER 6% OF WHAT'S TERMED 603 00:27:27,560 --> 00:27:31,040 DISABLED ADULT CHILDREN 604 00:27:31,040 --> 00:27:33,280 RECEIVING THE BENEFITS HAVING A 605 00:27:33,280 --> 00:27:38,480 PRIMARY IMPAIRMENT OF AUTISM. 606 00:27:38,480 --> 00:27:40,840 DISABLED ADULT CHILDREN ARE 607 00:27:40,840 --> 00:27:49,080 ADULTS WHO FIRST HAD A DIAGNOSIS 608 00:27:49,080 --> 00:27:59,160 BEFORE AGE 22 AND BASED ON A 609 00:27:59,160 --> 00:28:04,240 PARENT A BENEFIT OF THEIR OWN. 610 00:28:04,240 --> 00:28:07,160 IN GENERAL SSI PAYMENTS ARE 611 00:28:07,160 --> 00:28:11,120 ABOVE THE AVERAGE AND DI 612 00:28:11,120 --> 00:28:14,480 BENEFITS VARY BY CATEGORY. 613 00:28:14,480 --> 00:28:16,600 THE COUNTS LIKELY UNDERESTIMATE 614 00:28:16,600 --> 00:28:18,160 THE PEOPLE OF AUTISM IN EACH 615 00:28:18,160 --> 00:28:22,040 PROGRAM BECAUSE OF THE WAY DATA 616 00:28:22,040 --> 00:28:23,360 IS COLLECTED. 617 00:28:23,360 --> 00:28:25,520 WHILE FULL MEDICAL HISTORY IS 618 00:28:25,520 --> 00:28:27,080 CONSIDERED THE MAIN DATA SYSTEMS 619 00:28:27,080 --> 00:28:29,280 JUST RECORD A PRIMARY AND 620 00:28:29,280 --> 00:28:29,800 SECONDARY IMPAIRMENT AND 621 00:28:29,800 --> 00:28:31,280 OFFICIAL STATISTICS GO BY THE 622 00:28:31,280 --> 00:28:33,800 PRIMARY IMPAIRMENT LISTED. 623 00:28:33,800 --> 00:28:36,040 BUT AUTISM COULD BE THE 624 00:28:36,040 --> 00:28:37,520 SECONDARY IMPAIRMENT OR NOT 625 00:28:37,520 --> 00:28:41,520 LISTED AT ALL IF THE THIRD OR 626 00:28:41,520 --> 00:28:49,080 FOURTH I MPAIRMENIMPAIRMENT. 627 00:28:49,080 --> 00:28:51,760 IT DEPENDS ON HOW IT'S RECORDED. 628 00:28:51,760 --> 00:28:53,160 THE BULK OF THE IT PRESENTATION 629 00:28:53,160 --> 00:28:55,160 IS ABOUT WORKING AND THE POINT I 630 00:28:55,160 --> 00:28:58,320 WANT TO DRIVE HOME IS DI AND SSI 631 00:28:58,320 --> 00:28:59,480 RECIPIENTS CAN WORK. 632 00:28:59,480 --> 00:29:01,400 THERE'S LOTS RULES TO SUPPORT 633 00:29:01,400 --> 00:29:04,280 WORK AND SUMMARIZED IN WHAT'S 634 00:29:04,280 --> 00:29:06,160 CALLED THE RED BOOK AND IF YOU 635 00:29:06,160 --> 00:29:09,280 CAN SEE IT'S LITERALLY A RED 636 00:29:09,280 --> 00:29:13,560 BOOK AND CAN BE FOUND ONLINE AND 637 00:29:13,560 --> 00:29:15,760 IN AKISS 638 00:29:18,920 --> 00:29:20,640 >> ADDITION TO HARD COPY FORMAT 639 00:29:20,640 --> 00:29:23,600 AND A LINK AT THE END OF THE 640 00:29:23,600 --> 00:29:24,160 PRESENTATION. 641 00:29:24,160 --> 00:29:25,760 SO I WANT TO COVER SOME OF THESE 642 00:29:25,760 --> 00:29:28,280 WORK INCENTIVES. 643 00:29:28,280 --> 00:29:30,880 THERE'S A LOT OF LISTED ON THE 644 00:29:30,880 --> 00:29:33,960 SLIDES AND COVER A COUPLE AT A 645 00:29:33,960 --> 00:29:34,640 HIGH LEVEL. 646 00:29:34,640 --> 00:29:37,040 ON THIS SLIDE THIS TALKS ABOUT 647 00:29:37,040 --> 00:29:38,560 THE CONTINUED PAYMENT UNDER VR 648 00:29:38,560 --> 00:29:40,800 OR SIMILAR PROGRAM ALSO CALLED 649 00:29:40,800 --> 00:29:43,000 SECTION 301. 650 00:29:43,000 --> 00:29:47,160 IT IF YOU'RE RECEIVING THIS AND 651 00:29:47,160 --> 00:29:53,520 HAVE A DETERMINATION AND LOSE 652 00:29:53,520 --> 00:30:00,240 YOUR ELIGIBILITY AND YOU CAN 653 00:30:00,240 --> 00:30:02,240 HAVE AN INDIVIDUALIZED EDUCATION 654 00:30:02,240 --> 00:30:02,920 PLAN INCLUDED. 655 00:30:02,920 --> 00:30:04,360 THIS REQUIRES A SPECIFIC 656 00:30:04,360 --> 00:30:08,920 APPLICATION AND SUPERCEDED BY 657 00:30:08,920 --> 00:30:12,360 OTHER PROGRAM POLICIES SUCH AS 658 00:30:12,360 --> 00:30:19,040 STATUTORY BEN PIT -- BENEFIT 659 00:30:19,040 --> 00:30:20,760 CONTINUATION AND IT'S WIDELY 660 00:30:20,760 --> 00:30:27,960 AVAILABLE AND FOR SSI IF YOU'RE 661 00:30:27,960 --> 00:30:34,000 UNDER AGE 22 MOST EARNINGS WILL 662 00:30:34,000 --> 00:30:36,960 BE EXCLUDED UP TO $7400 PER 663 00:30:36,960 --> 00:30:47,840 YEAR. 664 00:30:47,840 --> 00:30:48,800 IT SHOULD BE USED MORE THAN IT 665 00:30:48,800 --> 00:30:52,160 IS IT, I THINK. 666 00:30:52,160 --> 00:30:52,280 667 00:31:06,960 --> 00:31:08,800 THERE'S SERVICE ANIMALS AND 668 00:31:08,800 --> 00:31:10,080 MEDICAL DEVICES AND OTHER THINGS 669 00:31:10,080 --> 00:31:11,480 NEEDED FOR AN INDIVIDUAL TO WORK 670 00:31:11,480 --> 00:31:13,480 ARE EXCLUDED FROM THE SSI 671 00:31:13,480 --> 00:31:14,800 MONTHLY PAYMENT CALCULATION AND 672 00:31:14,800 --> 00:31:19,760 THE AGS KERM NATION. 673 00:31:19,760 --> 00:31:21,760 -- SGA DETERMINATION AND IF 674 00:31:21,760 --> 00:31:23,480 THEY LEAVE BECAUSE THEY RETURNED 675 00:31:23,480 --> 00:31:25,160 TO WORK THEY CAN RETURN THROUGH 676 00:31:25,160 --> 00:31:27,600 AN EXPEDITED REINSTATEMENT 677 00:31:27,600 --> 00:31:29,480 PROCESS IF THEY NEED TO COME 678 00:31:29,480 --> 00:31:34,360 BACK TO THE PROGRAM WITHIN FIVE 679 00:31:34,360 --> 00:31:34,560 YEARS. 680 00:31:34,560 --> 00:31:35,160 THEY'LL GET IMMEDIATE PAYMENT 681 00:31:35,160 --> 00:31:37,240 FOR A PERIOD OF TIME AND THERE 682 00:31:37,240 --> 00:31:37,920 ARE SOME CONDITIONS. 683 00:31:37,920 --> 00:31:39,920 THEY MUST HAVE THE SAME MEDICAL 684 00:31:39,920 --> 00:31:41,160 CONDITION AND MEET OTHER 685 00:31:41,160 --> 00:31:41,480 CONDITIONS. 686 00:31:41,480 --> 00:31:48,200 ALL THESE WORK INCENTIVES ARE 687 00:31:48,200 --> 00:31:50,920 DESIGNED TO MITIGATE SOME 688 00:31:50,920 --> 00:31:52,480 CONCERNS ABOUT RETURNING TO WORK 689 00:31:52,480 --> 00:31:53,360 THAT INDIVIDUALS MAY HAVE IF 690 00:31:53,360 --> 00:31:55,080 THEY'RE RECEIVING BENEFITS AND 691 00:31:55,080 --> 00:31:57,600 NOT ABLE TO CONTINUE TO RECEIVE 692 00:31:57,600 --> 00:32:08,800 STAY OFF THE PROGRAM. 693 00:32:08,800 --> 00:32:11,240 I WANT TO TALK ABOUT THE SECOND 694 00:32:11,240 --> 00:32:11,520 BULLET. 695 00:32:11,520 --> 00:32:21,320 TAT -- THAT ALLOWS AN 696 00:32:21,320 --> 00:32:22,000 INDIVIDUAL TO CONTINUE EVEN IF 697 00:32:22,000 --> 00:32:24,120 THEY ARE RETURN TO WORK BUT IT'S 698 00:32:24,120 --> 00:32:30,560 UP TO $40,000 I BELIEVE AND SOME 699 00:32:30,560 --> 00:32:34,680 OTHER IT VARIES A LOT. 700 00:32:34,680 --> 00:32:36,120 PEOPLE WE HEAR PEOPLE ARE 701 00:32:36,120 --> 00:32:37,840 INTERESTED IN SSI FROM THE 702 00:32:37,840 --> 00:32:40,120 CONNECTION TO MEDICAID AND SO 703 00:32:40,120 --> 00:32:42,480 THERE ARE WAYS TO CONTINUE 704 00:32:42,480 --> 00:32:45,360 RECEIVE MEDICAID EVEN IF YOU ARE 705 00:32:45,360 --> 00:33:00,760 WORKING. 706 00:33:00,760 --> 00:33:06,600 THESE AREN'T SSA POLICIES BUT 707 00:33:06,600 --> 00:33:08,600 SIMILAR TO 529 PROGRAMS FOR 708 00:33:08,600 --> 00:33:11,800 CHECK AND AN INDIVIDUAL CAN HAVE 709 00:33:11,800 --> 00:33:15,080 UP TO $100,000 IN THESE TAX 710 00:33:15,080 --> 00:33:16,360 ACCOUNTS AND WON'T COUNT TOWARDS 711 00:33:16,360 --> 00:33:17,360 SSI PURPOSES. 712 00:33:17,360 --> 00:33:25,000 IT DOES HELP MITIGATE SOME OF 713 00:33:25,000 --> 00:33:30,600 THE LIMITATIONS BY THE $200,000 714 00:33:30,600 --> 00:33:33,280 LIMIT AN INDIVIDUAL HAS IN TERMS 715 00:33:33,280 --> 00:33:45,480 OF ASSETS. 716 00:33:45,480 --> 00:33:48,560 WE KNOW THE POLICY COMPLEX AND 717 00:33:48,560 --> 00:33:54,360 EACH SSA FIELD OFFICE THERE'S A 718 00:33:54,360 --> 00:33:59,160 WORK LIAISON WHO CAN PROVIDE 719 00:33:59,160 --> 00:34:01,040 HELP AND THERE'S THOSE 720 00:34:01,040 --> 00:34:03,880 RESPONSIBLE FOR WORK ISSUES OVER 721 00:34:03,880 --> 00:34:04,760 A BROADER GEOGRAPHIC AREA AND 722 00:34:04,760 --> 00:34:10,960 THESE ARE EMPLOYEES WHOSE JOB IT 723 00:34:10,960 --> 00:34:13,520 IS TO PROVIDE SUPPORT AND NOT 724 00:34:13,520 --> 00:34:14,600 SSA EMPLOYEE OR TECHNICIAN WILL 725 00:34:14,600 --> 00:34:20,080 UNDERSTAND ALL THE DEPTHS OF 726 00:34:20,080 --> 00:34:23,680 THESE RULES AND THEY HAVE HELP 727 00:34:23,680 --> 00:34:28,760 INTERNALLY AND SSA FUNDS 728 00:34:28,760 --> 00:34:31,760 EXTERNAL ORGANIZATIONS AND 729 00:34:31,760 --> 00:34:34,760 PROVIDE BENEFIT OUTREACH TO BEN 730 00:34:34,760 --> 00:34:36,320 BENEFICIARIES OR PEOPLE 731 00:34:36,320 --> 00:34:38,320 INTERESTED IN WORK OR ARE 732 00:34:38,320 --> 00:34:40,280 WORKING AND FUNDS AGENCIES UNDER 733 00:34:40,280 --> 00:34:44,840 THE PROTECTION AND ADVOCACY FOR 734 00:34:44,840 --> 00:34:45,680 BENEFICIARIES OF SOCIAL SECURITY 735 00:34:45,680 --> 00:34:48,360 TO HELP PROTECT THE RIGHTS OF 736 00:34:48,360 --> 00:34:48,960 PERSONS WITH DISABILITIES 737 00:34:48,960 --> 00:35:01,040 RELATED TO WORK. 738 00:35:01,040 --> 00:35:03,200 SSA HAS TWO INDEPENDENT RETURN 739 00:35:03,200 --> 00:35:07,600 TO WORK PROGRAMS AND MANY ARE 740 00:35:07,600 --> 00:35:11,760 ELIGIBLE FOR REHABILITATIONAL 741 00:35:11,760 --> 00:35:14,600 SERVICE AND WILL BE REIMBURSED 742 00:35:14,600 --> 00:35:17,560 FOR SUCCESSFUL OUTCOMES AND A 743 00:35:17,560 --> 00:35:20,800 BENEFICIARY WHO DOESN'T WANT TO 744 00:35:20,800 --> 00:35:22,800 WORK BECAUSE OF A WAIT LIST OR 745 00:35:22,800 --> 00:35:24,800 ANOTHER REASON HAS THE CHOICE IF 746 00:35:24,800 --> 00:35:28,800 THEY'RE OVER 18 TO WORK WITH 747 00:35:28,800 --> 00:35:30,080 WHAT ARE CALLED EMPLOYMENT 748 00:35:30,080 --> 00:35:31,640 NETWORKS IN OUR TICKET TO WORK 749 00:35:31,640 --> 00:35:34,640 PROGRAM AND SSA WILL REIMBURSE 750 00:35:34,640 --> 00:35:36,880 THE EMPLOYMENT NETWORKS FOR 751 00:35:36,880 --> 00:35:38,000 SPECIFIC MILESTONES RELATED TO 752 00:35:38,000 --> 00:35:38,560 WORK. 753 00:35:38,560 --> 00:35:41,000 THEY'RE GENERALLY LEVELS OF 754 00:35:41,000 --> 00:35:43,600 EMPLOYMENT OR MONTHS WITHOUT 755 00:35:43,600 --> 00:35:46,160 RECEIVING BENEFITS BUT VRs HAVE 756 00:35:46,160 --> 00:35:49,320 AN OPTION TO GET PAID UNDER THE 757 00:35:49,320 --> 00:35:56,560 IT TRADITIONAL COST 758 00:35:56,560 --> 00:35:58,360 REIMBURSEMENT PROGRAM AND SOME 759 00:35:58,360 --> 00:36:03,120 ARE PRIVATE OR NONPROFIT AND 760 00:36:03,120 --> 00:36:05,520 MULTIPLE OTHER STATE AGENCIES 761 00:36:05,520 --> 00:36:09,520 CAN BE ENs AND SUPPORT THE 762 00:36:09,520 --> 00:36:12,960 BUDGET BY HELPING SSA 763 00:36:12,960 --> 00:36:13,280 BENEFICIARIES. 764 00:36:13,280 --> 00:36:19,280 THE NEXT SHIED. 765 00:36:19,280 --> 00:36:19,560 -- SLIDE. 766 00:36:19,560 --> 00:36:24,360 THE NEXT SLIDES HIGHLIGHT THE 767 00:36:24,360 --> 00:36:28,200 LIMITED RESEARCH AND AUTISM 768 00:36:28,200 --> 00:36:30,560 THERE'S NOT RELATED TO THIS AND 769 00:36:30,560 --> 00:36:32,040 I'M HOPING THE SLIDE DECK MAKES 770 00:36:32,040 --> 00:36:33,360 IT UP TO EVERYBODY. 771 00:36:33,360 --> 00:36:35,640 THERE'S LINK THERE FOR ALL OF 772 00:36:35,640 --> 00:36:41,560 THESE AND A BRIEF SUMMARY OF 773 00:36:41,560 --> 00:36:47,400 EACH ONE AND ONE MENTIONED THE 774 00:36:47,400 --> 00:36:49,480 PROMISE PROJECT AND PROMOTING 775 00:36:49,480 --> 00:36:53,320 READINESS IN MINORS WAS A JOINT 776 00:36:53,320 --> 00:36:56,560 COLLABORATION WITH AGENCIES TO 777 00:36:56,560 --> 00:36:59,960 OFFER SERVICES TO INDIVIDUALS 778 00:36:59,960 --> 00:37:02,760 WHO ARE RECEIVING SSI AND THEIR 779 00:37:02,760 --> 00:37:05,920 FAMILIES AND INDIVIDUALS HAVE TO 780 00:37:05,920 --> 00:37:08,760 BE AGES 14 TO 16. 781 00:37:08,760 --> 00:37:10,360 THERE'S 11 STATES INVOLVED AND 782 00:37:10,360 --> 00:37:13,080 ONE OF THE REPORTS WE DID OR 783 00:37:13,080 --> 00:37:19,040 CAME OUT WAS JUST ON HOW THE 784 00:37:19,040 --> 00:37:22,320 SERVICES THAT WERE PROVIDED 785 00:37:22,320 --> 00:37:26,560 AFFECT EED WHAT THE IMPACT WAS ON 786 00:37:26,560 --> 00:37:27,840 INDIVIDUALS WITH THE DIAGNOSIS 787 00:37:27,840 --> 00:37:29,120 OF AUTISM. 788 00:37:29,120 --> 00:37:30,400 SO THERE'S SOME INTERESTING 789 00:37:30,400 --> 00:37:32,160 RESEARCH OUT THERE BUT I'M NOT 790 00:37:32,160 --> 00:37:33,520 GOING TO GO THROUGH EACH OF 791 00:37:33,520 --> 00:37:36,240 THESE. 792 00:37:36,240 --> 00:37:38,040 IN THE INTEREST OF TIME CAN WE 793 00:37:38,040 --> 00:37:40,600 GO TO SLIDE 26 HOW TO APPLY. 794 00:37:40,600 --> 00:37:43,480 I WANTED TO HIGHLIGHT HOW TO 795 00:37:43,480 --> 00:37:46,320 APPLY TO SSI AND DI. 796 00:37:46,320 --> 00:37:48,160 RIGHT NOW FILED OFFICES ARE 797 00:37:48,160 --> 00:37:49,080 CLOSED. 798 00:37:49,080 --> 00:37:50,760 YOU PROBABLY KNOW AS MUCH AS I 799 00:37:50,760 --> 00:37:50,960 DO. 800 00:37:50,960 --> 00:37:54,160 THE ONLY WAY TO APPLY IS BY 801 00:37:54,160 --> 00:37:59,440 GOING ONLINE OR BY PHONE AND 802 00:37:59,440 --> 00:38:00,960 UNFORTUNATELY FOR CHILDREN WHICH 803 00:38:00,960 --> 00:38:04,160 ARE THOSE UNDER 18, YOU CANNOT 804 00:38:04,160 --> 00:38:12,160 APPLY FOR SSI ONLINE YOU NEED A 805 00:38:12,160 --> 00:38:14,720 A -- APPLY. 806 00:38:14,720 --> 00:38:21,560 AND SSA BECAUSE OF THE PANDEMIC 807 00:38:21,560 --> 00:38:25,040 AND KNOWING FIELD OFFICES ARE 808 00:38:25,040 --> 00:38:29,520 CLOSED STEPPED UP THE 809 00:38:29,520 --> 00:38:31,960 INFORMATION AND OUTREACH 810 00:38:31,960 --> 00:38:32,680 EFFORTS. 811 00:38:32,680 --> 00:38:34,560 THERE'S A WEBSITE DEDICATED TO 812 00:38:34,560 --> 00:38:35,360 INFORMATION FOR HELPING PEOPLE 813 00:38:35,360 --> 00:38:40,080 HELPING OTHERS. 814 00:38:40,080 --> 00:38:41,160 AND THIS INCLUDES ADDITIONAL 815 00:38:41,160 --> 00:38:43,000 INFORMATION HOW TO APPLY AND 816 00:38:43,000 --> 00:38:47,440 OTHER RESOURCES AND HOW TO HELP 817 00:38:47,440 --> 00:38:48,400 SOMEBODY APPLY. 818 00:38:48,400 --> 00:38:50,360 WHAT YOU NEED TO DO AND WHAT 819 00:38:50,360 --> 00:38:51,920 YOU'RE NOT ALLOWED TO DO AND 820 00:38:51,920 --> 00:38:56,160 WHAT YOU CAN HELP THEM DO BUT 821 00:38:56,160 --> 00:39:01,240 IT'S A GOOD RESOURCE FOR PEOPLE 822 00:39:01,240 --> 00:39:03,000 TO BE AWARE OF. 823 00:39:03,000 --> 00:39:04,560 THERE'S TWO OTHER THINGS NOT ON 824 00:39:04,560 --> 00:39:06,680 THE SLIDES I WANT TO HIGHLIGHT 825 00:39:06,680 --> 00:39:07,560 AND A COUPLE OTHER THINGS AS 826 00:39:07,560 --> 00:39:07,760 WELL. 827 00:39:07,760 --> 00:39:13,080 I WANT TO PHOT -- NOTE WE HAVE 828 00:39:13,080 --> 00:39:15,840 THE INTERVENTIONAL COOPERATIVE 829 00:39:15,840 --> 00:39:19,160 PROGRAM A WAY TO TEST A NEW 830 00:39:19,160 --> 00:39:21,360 POLICY OR PROGRAM AND FORECAST 831 00:39:21,360 --> 00:39:23,280 FUNDING OPPORTUNITIES ON 832 00:39:23,280 --> 00:39:26,280 GRANTS.gov IF YOU CAN SPREAD THE 833 00:39:26,280 --> 00:39:28,440 WORD THAT'S GREAT. 834 00:39:28,440 --> 00:39:31,080 IT'S WHERE WE CAN CHANGE SSI 835 00:39:31,080 --> 00:39:32,320 PROGRAM RULES AND TEST NEW 836 00:39:32,320 --> 00:39:34,960 SERVICES AND PARTNER PEOPLE WHO 837 00:39:34,960 --> 00:39:36,800 ARE HELPING PROVIDE BENEFITS 838 00:39:36,800 --> 00:39:37,840 COUNSELLING OR ASSISTANCE 839 00:39:37,840 --> 00:39:41,360 APPLYING ALL NEW WAYS OF TRYING 840 00:39:41,360 --> 00:39:46,760 TO TEST NEW POLICIES AND 841 00:39:46,760 --> 00:39:52,040 EVALUATE THEM AND MUCH IS BASED 842 00:39:52,040 --> 00:39:52,640 ON LEGISLATION. 843 00:39:52,640 --> 00:39:54,960 THERE'S PROPOSALS AS PART OF THE 844 00:39:54,960 --> 00:39:56,960 BUDGET IF YOU NEVER READ OUR 845 00:39:56,960 --> 00:39:58,960 BUDGET IT'S A THRILLING READ BUT 846 00:39:58,960 --> 00:40:02,240 THERE'S A SECTION ON LEGISLATIVE 847 00:40:02,240 --> 00:40:05,360 PROPOSALS AND RECENT ONES 848 00:40:05,360 --> 00:40:08,640 INCLUDED LIKE GIVING SSA THE 849 00:40:08,640 --> 00:40:10,200 AUTHORITY TO REFER INDIVIDUALS 850 00:40:10,200 --> 00:40:11,560 TO VR WHICH WE DON'T HAVE THE 851 00:40:11,560 --> 00:40:17,320 AUTHORITY TO AND IF YOU'RE 852 00:40:17,320 --> 00:40:19,040 RECEIVING SSI AND UNDER 21 OR 853 00:40:19,040 --> 00:40:22,400 MAYBE 24 HAD, WE WON'T COUNT THE 854 00:40:22,400 --> 00:40:22,680 EARNINGS. 855 00:40:22,680 --> 00:40:24,520 WE PROPOSED CHANGING THE 856 00:40:24,520 --> 00:40:26,160 STRUCTURE TO A TIERED STRUCTURE 857 00:40:26,160 --> 00:40:29,480 INSTEAD OF ALL OR NOTHING AND 858 00:40:29,480 --> 00:40:30,960 PROPOSED ELIMINATING THE 859 00:40:30,960 --> 00:40:34,520 MAINTENANCE RULES FOR SI AND 860 00:40:34,520 --> 00:40:36,520 OVER CHANGES AND CHANGES LIKE 861 00:40:36,520 --> 00:40:41,040 THAT CAN'T BE DONE BY SSA ALONE. 862 00:40:41,040 --> 00:40:42,960 THEY DO REQUIRE LEGISLATION AS 863 00:40:42,960 --> 00:40:45,280 WELL AS CHANGES TO THOSE 864 00:40:45,280 --> 00:40:47,000 EARNINGS LIMITS AND ASSET 865 00:40:47,000 --> 00:40:47,280 LIMITS. 866 00:40:47,280 --> 00:40:48,360 I KNOW IT'S FRUSTRATION TO EIGHT 867 00:40:48,360 --> 00:40:53,520 OF PEOPLE SO I WANT TO MENTION 868 00:40:53,520 --> 00:40:55,080 THAT AND AS A RESULT OF THE 869 00:40:55,080 --> 00:40:57,280 PANDEMIC AND THINGS GOING ON AND 870 00:40:57,280 --> 00:40:59,560 RECENT EXECUTIVE ORDERS WE'RE 871 00:40:59,560 --> 00:41:01,320 WORKING ON A BETTER CUSTOMER 872 00:41:01,320 --> 00:41:03,840 EXPERIENCE AND WORKING ON BETTER 873 00:41:03,840 --> 00:41:07,040 INTERNET OPTION OR ONLINE 874 00:41:07,040 --> 00:41:09,240 PRESENCE AND ONLINE PRESENCE FOR 875 00:41:09,240 --> 00:41:11,400 PEOPLE TO DO THINGS SO THEY 876 00:41:11,400 --> 00:41:13,040 DON'T HAVE TO COME IN THE OFFICE 877 00:41:13,040 --> 00:41:16,200 BUT FIELD RECEIVES AREN'T GOING 878 00:41:16,200 --> 00:41:19,480 ANYWHERE BUT WE WANT TO MEET 879 00:41:19,480 --> 00:41:24,000 PEOPLE WHERE THEY ARE. 880 00:41:24,000 --> 00:41:26,000 ALSO PART OF THAT IS PART OF OUR 881 00:41:26,000 --> 00:41:29,280 RULES AND REGULATIONS HAVE 882 00:41:29,280 --> 00:41:30,840 REQUIRED WHAT SIGNATURES AND 883 00:41:30,840 --> 00:41:33,280 WE'RE ELIMINATING THE NEED FOR 884 00:41:33,280 --> 00:41:34,360 SIGNATURES ON A LOT OF OUR FORMS 885 00:41:34,360 --> 00:41:37,000 AND THAT WILL GO A LONG WAY 886 00:41:37,000 --> 00:41:39,800 TOWARDS HELPING US BE MORE 887 00:41:39,800 --> 00:41:46,560 ACCESSIBLE IN THE 21st CENTURY. 888 00:41:46,560 --> 00:41:51,760 THE REST OF THE SLIDES ARE 889 00:41:51,760 --> 00:41:53,240 RESOURCES AND FACT SHEETS ON 890 00:41:53,240 --> 00:41:55,920 DISABILITY DETERMINATION, 891 00:41:55,920 --> 00:41:58,360 RESOURCE FOR PROFESSIONALS AND 892 00:41:58,360 --> 00:42:01,080 MEDICAL AND SCHOOL PROFESSIONALS 893 00:42:01,080 --> 00:42:02,600 AND OTHER THINGS LIKE TICKET TO 894 00:42:02,600 --> 00:42:03,960 WORK PROGRAM. 895 00:42:03,960 --> 00:42:07,040 WE ALSO HAVE A SPECIFIC YOUTH 896 00:42:07,040 --> 00:42:14,960 PORTAL THAT'S AN SSA.gov/YOUTH 897 00:42:14,960 --> 00:42:16,680 FOR YOUTH RECEIVING SSI AND 898 00:42:16,680 --> 00:42:19,040 WE'RE NOW 40% OF CHILDREN LOSE 899 00:42:19,040 --> 00:42:20,560 BENEFITS AT A CERTAIN PAGE. 900 00:42:20,560 --> 00:42:22,320 WE HAVE A LOT OF RESOURCES OUT 901 00:42:22,320 --> 00:42:22,600 THIS. 902 00:42:22,600 --> 00:42:26,440 I HOPE YOU CAN ALL LOOK AT 903 00:42:26,440 --> 00:42:30,320 THESE, IF NOT, PLEASE FEEL FREE 904 00:42:30,320 --> 00:42:31,600 TO REACH OUT TO ME AND IT YOU 905 00:42:31,600 --> 00:42:33,240 FOR YOUR TIME. 906 00:42:33,240 --> 00:42:36,120 I'M SORRY IF I WENT TOO LONG AND 907 00:42:36,120 --> 00:42:36,720 I'M ABLE TO ANSWER QUESTIONS 908 00:42:36,720 --> 00:42:50,360 TOO. 909 00:42:50,360 --> 00:42:51,520 >> THANK YOU, WE APPRECIATE THE 910 00:42:51,520 --> 00:42:51,800 INFORMATION. 911 00:42:51,800 --> 00:42:53,080 WE HAVE A COUPLE MINUTES. 912 00:42:53,080 --> 00:42:55,080 WE HAVE A COUPLE PEOPLE WAITING 913 00:42:55,080 --> 00:42:57,640 TO COMMENT AND ONE OF THEM I'M 914 00:42:57,640 --> 00:43:00,040 GOING TO READ BUT WE'LL START 915 00:43:00,040 --> 00:43:00,400 WITH PAUL WANG. 916 00:43:00,400 --> 00:43:05,000 DR. WANG. 917 00:43:05,000 --> 00:43:07,520 >> DR. HEMMETER FOR A DETAILED 918 00:43:07,520 --> 00:43:07,840 PRESENTATION. 919 00:43:07,840 --> 00:43:09,520 I APPRECIATE YOUR MENTION OF THE 920 00:43:09,520 --> 00:43:13,520 ABLE ACT AND THE ABLE ACCOUNTS 921 00:43:13,520 --> 00:43:14,720 THAT HELPS AS MANY PEOPLE AS 922 00:43:14,720 --> 00:43:17,440 POSSIBLE WILL BE ABLE TO TAKE 923 00:43:17,440 --> 00:43:17,720 ADVANTAGE. 924 00:43:17,720 --> 00:43:28,160 I WANTED TO COMMENT ON THE ASD 925 00:43:28,160 --> 00:43:30,040 LISTING IT CLOSELY PARALLELS 926 00:43:30,040 --> 00:43:31,600 DIAGNOSTIC CRITERIA FOR AUTISM 927 00:43:31,600 --> 00:43:33,720 BUT LOOKS LIKE IT PARALLELS 928 00:43:33,720 --> 00:43:35,680 OUTDATED CRITERIA. 929 00:43:35,680 --> 00:43:37,800 THE NEWEST EDITION OF THE 930 00:43:37,800 --> 00:43:39,960 DIAGNOSTIC BIBLE, IF YOU WILL, 931 00:43:39,960 --> 00:43:41,560 INCLUDES SENSORY SYMPTOMS. 932 00:43:41,560 --> 00:43:42,960 SENSORY SYMPTOMS CAN BE VERY 933 00:43:42,960 --> 00:43:45,480 IMPAIRING FOR INDIVIDUALS WITH 934 00:43:45,480 --> 00:43:46,080 AUTISM. 935 00:43:46,080 --> 00:43:47,560 IT'S NOW PART OF THE OFFICIAL 936 00:43:47,560 --> 00:43:48,840 DIAGNOSTIC CRITERIA AND SUGGEST 937 00:43:48,840 --> 00:43:49,480 THE LISTING SHOULD INCORPORATE 938 00:43:49,480 --> 00:43:53,800 THAT. 939 00:43:53,800 --> 00:43:55,800 >> THANK YOU, I'LL TAKE THAT 940 00:43:55,800 --> 00:43:57,320 BACK TO OUR OFFICE OF DISABILITY 941 00:43:57,320 --> 00:43:57,560 POLICY. 942 00:43:57,560 --> 00:43:59,080 I DON'T KNOW WHAT THEIR SCHEDULE 943 00:43:59,080 --> 00:44:01,520 FOR UPDATING THE PARTICULAR 944 00:44:01,520 --> 00:44:07,600 LISTING BUT I WILL NOTE THAT. 945 00:44:07,600 --> 00:44:09,160 HOPEFULLY I COPIED THE RIGHT ONE 946 00:44:09,160 --> 00:44:11,440 AND NOT AN OUTDATED ONE BUT I'LL 947 00:44:11,440 --> 00:44:13,520 BRING THAT BACK, THANKS. 948 00:44:13,520 --> 00:44:20,240 >> NEXT I'M GOING TO READ 949 00:44:20,240 --> 00:44:21,200 QUESTION AND COMMENT. 950 00:44:21,200 --> 00:44:22,400 I WANT TO THANK YOU VERY MUCH 951 00:44:22,400 --> 00:44:26,760 FOR YOUR COMMENT I'LL READ IT 952 00:44:26,760 --> 00:44:27,640 WORD FOR WORD. 953 00:44:27,640 --> 00:44:30,200 DR. HEMMETER THANK YOU FOR THE 954 00:44:30,200 --> 00:44:31,080 INFORMATIVE PRESENTATION I'M 955 00:44:31,080 --> 00:44:33,000 WRITING AS AN ADULT ON THE 956 00:44:33,000 --> 00:44:37,080 SPECTRUM WHO IS A PARENT OF 957 00:44:37,080 --> 00:44:38,720 SEVERAL DISABLED CHILDREN 958 00:44:38,720 --> 00:44:40,400 SEVERAL HAVE DIAGNOSES OF 959 00:44:40,400 --> 00:44:43,960 AUTISTIC DISCOVERED AND ONE WAS 960 00:44:43,960 --> 00:44:47,960 A PREVIOUS SSI PARTICIPANT AND I 961 00:44:47,960 --> 00:44:49,200 WANT TO COMMUNICATE THAT 962 00:44:49,200 --> 00:44:51,840 SPEAKING WITH THE SSA IS 963 00:44:51,840 --> 00:44:52,400 BURDENSOME. 964 00:44:52,400 --> 00:44:54,720 YOUR PROCESSES ARE OFTEN 965 00:44:54,720 --> 00:44:56,960 INTIMIDATING AND COGNITIVELY 966 00:44:56,960 --> 00:44:57,280 INACCESSIBLE. 967 00:44:57,280 --> 00:44:59,920 A CHILD DROPPED WAS DROVE OFF 968 00:44:59,920 --> 00:45:00,880 SSI DURING THE PREVIOUS 969 00:45:00,880 --> 00:45:01,960 ADMINISTRATION BEFORE THE IT 970 00:45:01,960 --> 00:45:03,640 PANDEMIC DESPITE STILL VERY MUCH 971 00:45:03,640 --> 00:45:05,520 QUALIFYING AND VERY MUCH STILL 972 00:45:05,520 --> 00:45:07,120 NEEDING IT. 973 00:45:07,120 --> 00:45:09,880 THE REASON FOR WHATEVER REASON 974 00:45:09,880 --> 00:45:12,360 YOU ALL SENT A REQUEST FOR A 975 00:45:12,360 --> 00:45:13,960 SLEW OF DOCUMENTATION TO 976 00:45:13,960 --> 00:45:15,360 DETERMINE IF THE CHILD REMAINED 977 00:45:15,360 --> 00:45:15,840 ELIGIBLE, UNQUOTE. 978 00:45:15,840 --> 00:45:17,160 MOST THE THINGS THEY ASKED FOR 979 00:45:17,160 --> 00:45:19,080 ARE THINGS I DIDN'T HAVE AND 980 00:45:19,080 --> 00:45:21,360 DON'T EVEN KNOW HOW TO GET. 981 00:45:21,360 --> 00:45:22,960 SEVERAL WERE NOT NECESSARILY 982 00:45:22,960 --> 00:45:23,800 APPLICABLE TO MY CHILD. 983 00:45:23,800 --> 00:45:26,280 THERE WAS NO CONCESSION FOR THE 984 00:45:26,280 --> 00:45:29,360 FACT I AM MYSELF DISABLED AND 985 00:45:29,360 --> 00:45:30,800 HAVE TROUBLE WITH EXECUTIVE 986 00:45:30,800 --> 00:45:32,120 FUNCTION AND DETERMINING YOU 987 00:45:32,120 --> 00:45:35,040 NEEDED AND REQUESTING AND 988 00:45:35,040 --> 00:45:35,360 SUBMITTING. 989 00:45:35,360 --> 00:45:37,160 THERE WAS NO WAY OFFERED FOR ME 990 00:45:37,160 --> 00:45:38,880 TO COMMUNICATE WITH A HUMAN 991 00:45:38,880 --> 00:45:40,880 BEING BEFORE HAND TO GAIN 992 00:45:40,880 --> 00:45:43,000 CLARIFICATION ON WHAT OTHER 993 00:45:43,000 --> 00:45:51,600 ITEMS WOULD BE ACCEPTABLE AND 994 00:45:51,600 --> 00:45:53,880 NONE HAD TO DO WITH INCOME AND 995 00:45:53,880 --> 00:45:55,600 ASSETS AND VARIOUS REQUEST FOR 996 00:45:55,600 --> 00:45:59,680 RECORDS AND DO YOU KNOW HOW 997 00:45:59,680 --> 00:46:00,800 INTIMIDATING IT COMMUNICATING 998 00:46:00,800 --> 00:46:05,720 WITH SSI AND I PROCEEDED NOT TO 999 00:46:05,720 --> 00:46:07,960 PROCEED AND MY CHILD'S COVERING 1000 00:46:07,960 --> 00:46:13,920 LAPSE AND THE ONLY DIFFERENCE IS 1001 00:46:13,920 --> 00:46:16,360 YOU'RE ALL ASKING FOR MORE AND 1002 00:46:16,360 --> 00:46:19,280 HAD BEEN APPROVED UPON INITIAL 1003 00:46:19,280 --> 00:46:19,720 APPLICATION. 1004 00:46:19,720 --> 00:46:23,120 MY CHILD IS AUTISTIC AND GETTING 1005 00:46:23,120 --> 00:46:25,720 OLDER AND SSI MEDICAID WOULD 1006 00:46:25,720 --> 00:46:26,960 HAVE BEEN CRITICAL AND NO DON'T 1007 00:46:26,960 --> 00:46:31,120 HAVE IT AND I KNOW I'M NOT ALONE 1008 00:46:31,120 --> 00:46:31,720 ALONE. 1009 00:46:31,720 --> 00:46:33,200 IT NEEDS TO BE FIXED. 1010 00:46:33,200 --> 00:46:33,960 JEFFERY, DO YOU HAVE ANY 1011 00:46:33,960 --> 00:46:37,480 COMMENTS OR RESPONSES TO THAT? 1012 00:46:37,480 --> 00:46:41,440 >> I DO WANT TO SAY I'M SORRY TO 1013 00:46:41,440 --> 00:46:45,000 HEAR THE EXPERIENCE WASN'T GOOD. 1014 00:46:45,000 --> 00:46:49,160 I DO THINK I'LL TAKE BACK THE 1015 00:46:49,160 --> 00:46:51,080 COMMENT PARTICULARLY ABOUT 1016 00:46:51,080 --> 00:46:53,640 MAKING SURE TA THINGS ARE NOT 1017 00:46:53,640 --> 00:46:56,160 ALWAYS DISCUSSIBLE TO THE 1018 00:46:56,160 --> 00:46:58,000 PARENTS OF INDIVIDUALS. 1019 00:46:58,000 --> 00:47:01,680 FOR EVERYONE INVOLVED WHAT WAS 1020 00:47:01,680 --> 00:47:04,640 DESCRIBED WAS A MEDICAL 1021 00:47:04,640 --> 00:47:06,360 CONTINUING DISABILITY REVIEW OR 1022 00:47:06,360 --> 00:47:06,960 RE-DETERMINATION. 1023 00:47:06,960 --> 00:47:10,080 THIS IS PART OF WHAT SSA DOES IS 1024 00:47:10,080 --> 00:47:15,160 WHEN SOMEBODY'S AWARDED 1025 00:47:15,160 --> 00:47:18,600 BENEFITS, WE NEED TO REVIEW THE 1026 00:47:18,600 --> 00:47:22,160 CONTINUED ELIGIBILITY BY LAW. 1027 00:47:22,160 --> 00:47:27,120 THESE ARE CDRs OR 1028 00:47:27,120 --> 00:47:28,800 RE-DETERMINATIONS AND WHAT WE'RE 1029 00:47:28,800 --> 00:47:33,360 LOOKING FOR IN MOST CASES ARE 1030 00:47:33,360 --> 00:47:36,520 MEDICAL IMPROVEMENT IS THE 1031 00:47:36,520 --> 00:47:39,360 STANDARD FOR POST FOR CHILDHOOD 1032 00:47:39,360 --> 00:47:42,160 DISABILITY REVIEWS AND ADULT 1033 00:47:42,160 --> 00:47:44,320 ONES. 1034 00:47:44,320 --> 00:47:46,000 AND CONGRESS HAS ACTUALLY 1035 00:47:46,000 --> 00:47:46,760 APPROPRIATED A SIGNIFICANT 1036 00:47:46,760 --> 00:47:50,240 AMOUNT OF MONEY FOR THESE WHAT 1037 00:47:50,240 --> 00:47:56,600 ARE CALLED PROGRAM INTEGRITY 1038 00:47:56,600 --> 00:47:58,520 ACTIVITIES AND THEY'RE 1039 00:47:58,520 --> 00:47:59,040 LEGISLATIVELY REQUIRED. 1040 00:47:59,040 --> 00:48:01,280 I'M SORRY IT TURNED OUT THAT 1041 00:48:01,280 --> 00:48:01,560 WAY. 1042 00:48:01,560 --> 00:48:04,400 I WOULD ENCOURAGE YOU TO REAPPLY 1043 00:48:04,400 --> 00:48:05,560 AT THIS POINT. 1044 00:48:05,560 --> 00:48:07,960 AGAIN, I THINK THIS IS ONE THING 1045 00:48:07,960 --> 00:48:10,800 THAT MIGHT BE LOST FOR MANY 1046 00:48:10,800 --> 00:48:12,840 PEOPLE THOUGH AT ONE POINT 1047 00:48:12,840 --> 00:48:16,560 YOU'RE DETERMINED NOT ELIGIBLE, 1048 00:48:16,560 --> 00:48:19,600 YOU MAY STILL BE ELIGIBLE IN THE 1049 00:48:19,600 --> 00:48:20,760 FUTURE OR THERE ARE TECHNICAL 1050 00:48:20,760 --> 00:48:22,000 REASONS FOR DENIAL AND THINGS 1051 00:48:22,000 --> 00:48:24,360 LIKE THAT THAT CAN BE APPEALED 1052 00:48:24,360 --> 00:48:27,560 BUT ALSO NEW APPLICATIONS CAN BE 1053 00:48:27,560 --> 00:48:33,720 TAKEN ON FOR CLAIMS LIKE THAT. 1054 00:48:33,720 --> 00:48:39,800 I WILL TAKE BACK AND LET THE 1055 00:48:39,800 --> 00:48:41,960 COMMUNICATION OFFICE OF THE 1056 00:48:41,960 --> 00:48:43,920 COMPONENTS ABOUT THE CONCERNS 1057 00:48:43,920 --> 00:48:46,760 YOU EXPRESSED ABOUT TE 1058 00:48:46,760 --> 00:48:47,120 COMMUNICATION. 1059 00:48:47,120 --> 00:48:49,040 WHAT I'M ALSO HEARING IS AN 1060 00:48:49,040 --> 00:48:56,160 EXPLANATION IS PENEEDED. 1061 00:48:56,160 --> 00:48:56,760 >> THANK YOU FOR YOUR 1062 00:48:56,760 --> 00:48:59,920 PRESENTATION AND MY APOLOGY TO 1063 00:48:59,920 --> 00:49:03,560 THE THREE PEOPLE WE HAVE 1064 00:49:03,560 --> 00:49:05,120 QUESTION AND COMMENTS WE HAVE TO 1065 00:49:05,120 --> 00:49:06,600 MOVE ON TO THE NEXT SEGMENT OF 1066 00:49:06,600 --> 00:49:08,400 THE PROGRAM AND AN APPRECIATE 1067 00:49:08,400 --> 00:49:10,240 SSA COMING TODAY. 1068 00:49:10,240 --> 00:49:14,800 I ALSO APPRECIATE HEARING FROM 1069 00:49:14,800 --> 00:49:15,680 MEMBERS THIS COMMITTEE ABOUT 1070 00:49:15,680 --> 00:49:18,240 THIS IT CHALLENGES IN 1071 00:49:18,240 --> 00:49:20,800 NEGOTIATING THE SYSTEM AND SSA 1072 00:49:20,800 --> 00:49:25,520 WILL BE ABLE TO TAKE THOSE 1073 00:49:25,520 --> 00:49:27,000 COMMENTS BACK AND SEE WHAT THEY 1074 00:49:27,000 --> 00:49:32,440 CAN DO TO A MEMELIORATE THEM AND 1075 00:49:32,440 --> 00:49:35,920 NEXT SUSAN DANIELS IN AN UPDATE 1076 00:49:35,920 --> 00:49:36,560 AS THE NATIONAL AUTISM 1077 00:49:36,560 --> 00:49:37,120 COORDINATOR. 1078 00:49:37,120 --> 00:49:43,160 SUSAN. 1079 00:49:52,800 --> 00:49:54,680 >> I'M GOING TO GIVE YOU AN 1080 00:49:54,680 --> 00:49:59,040 UPDATE ABOUT ACTIVITIES AROUND 1081 00:49:59,040 --> 00:50:01,520 THE FEDERAL GOVERNMENT AND OUR 1082 00:50:01,520 --> 00:50:04,560 RECENT REPORT TO CONGRESS AND 1083 00:50:04,560 --> 00:50:06,120 THE PURPOSE IS TO SHARE 1084 00:50:06,120 --> 00:50:08,520 INFORMATION YOU MAY NOT HEAR 1085 00:50:08,520 --> 00:50:09,760 OTHERWISE THROUGH PEOPLE ON OUR 1086 00:50:09,760 --> 00:50:10,160 COMMITTEE. 1087 00:50:10,160 --> 00:50:11,360 SO FIRST I'M GOING TO TALK ABOUT 1088 00:50:11,360 --> 00:50:13,080 THE REPORT TO CONGRESS THAT WAS 1089 00:50:13,080 --> 00:50:14,400 RECENTLY SUBMITTED AND THEN GO 1090 00:50:14,400 --> 00:50:17,360 THROUGH A FEW UPDATES AND YOU 1091 00:50:17,360 --> 00:50:18,840 HAVE MORE DETAILED INFORMATION 1092 00:50:18,840 --> 00:50:21,400 IN THE MATERIALS ONLINE. 1093 00:50:21,400 --> 00:50:23,840 THERE'S A NATIONAL AUTISM 1094 00:50:23,840 --> 00:50:25,480 COORDINATOR UPDATER PACKET WITH 1095 00:50:25,480 --> 00:50:27,400 INFORMATION AND LINK AND THE 1096 00:50:27,400 --> 00:50:28,280 INFORMATION'S IN THE SLIDES IF 1097 00:50:28,280 --> 00:50:31,680 YOU WANT TO GO BACK LATER. 1098 00:50:31,680 --> 00:50:34,200 SO FIRST AS MENTIONED IN THE 1099 00:50:34,200 --> 00:50:37,000 FALL, OUR OFFICE WAS INVOLVED IN 1100 00:50:37,000 --> 00:50:38,640 COORDINATING THE 2021 HHS REPORT 1101 00:50:38,640 --> 00:50:40,200 TO CONGRESS ON HEALTH OF WELL 1102 00:50:40,200 --> 00:50:42,080 BEING OF PEOPLE ON THE AUTISM 1103 00:50:42,080 --> 00:50:46,280 SPECTRUM AND THIS IS REQUIRED BY 1104 00:50:46,280 --> 00:50:48,160 TE AUTISM CARES ACT OF 2019 AND 1105 00:50:48,160 --> 00:50:50,760 THE REPORT WAS SUBMITTED IN THE 1106 00:50:50,760 --> 00:50:51,520 FALL AND NOW AVAILABLE ON THE 1107 00:50:51,520 --> 00:50:52,480 IACC WEBSITE. 1108 00:50:52,480 --> 00:50:53,760 WE PLACED IT ON THE WEBSITE. 1109 00:50:53,760 --> 00:51:04,400 YOU CAN ACCESS THE PDF THERE. 1110 00:51:04,400 --> 00:51:05,880 THE PURPOSE WAS TO LOOK AT 1111 00:51:05,880 --> 00:51:07,680 PHYSICAL AND MENTAL HEALTH 1112 00:51:07,680 --> 00:51:09,120 OUTCOMES, ACCESS TO AUTISM 1113 00:51:09,120 --> 00:51:11,440 RELATED SERVICES AND SUPPORTS 1114 00:51:11,440 --> 00:51:12,920 AND ACCESS TO AND INCLUSION IN 1115 00:51:12,920 --> 00:51:16,200 THE COMMUNITY. 1116 00:51:16,200 --> 00:51:18,800 SO THERE WERE FOUR ELEMENTS 1117 00:51:18,800 --> 00:51:20,520 REQUIRED BY CONGRESS IN THIS 1118 00:51:20,520 --> 00:51:22,480 REPORT INCLUDING LOOKING AT 1119 00:51:22,480 --> 00:51:24,760 DEMOGRAPHIC FACTORS, THE 1120 00:51:24,760 --> 00:51:25,880 POLICIES AND PROGRAMS AT VARIOUS 1121 00:51:25,880 --> 00:51:27,600 FEDERAL AGENCIES, COMPREHENSIVE 1122 00:51:27,600 --> 00:51:29,160 APPROACHES BEING USED IMPROVE 1123 00:51:29,160 --> 00:51:31,080 HEALTH OUTCOMES AND WELL BEING 1124 00:51:31,080 --> 00:51:32,720 FOR INDIVIDUALS ON THE AUTISM 1125 00:51:32,720 --> 00:51:34,080 SPECTRUM AND THEY ALSO ASKED 1126 00:51:34,080 --> 00:51:36,960 DEPARTMENTS AND AGENCIES TO MAKE 1127 00:51:36,960 --> 00:51:40,800 SOME RECOMMENDATIONS HOW TO 1128 00:51:40,800 --> 00:51:41,480 ENSURE BETTER COORDINATION 1129 00:51:41,480 --> 00:51:44,160 BETWEEN RELEVANT AGENCIES AND 1130 00:51:44,160 --> 00:51:45,000 SERVICE PROVIDERS. 1131 00:51:45,000 --> 00:51:48,320 SO THE REPORT COVERED THOSE 1132 00:51:48,320 --> 00:51:48,600 THINGS. 1133 00:51:48,600 --> 00:51:49,400 THERE WERE 22 FEDERAL 1134 00:51:49,400 --> 00:51:50,560 DEPARTMENTS AND AGENCIES WE 1135 00:51:50,560 --> 00:51:51,960 REACHED OUT TO AND CONTRIBUTES 1136 00:51:51,960 --> 00:51:53,520 TO THIS REPORT AND I'M NOT GOING 1137 00:51:53,520 --> 00:51:57,800 TO READ ALL THE NAMES AND 1138 00:51:57,800 --> 00:52:04,000 ACRONYMS AND THERE'S 1139 00:52:04,000 --> 00:52:04,720 PARTICIPATION ACROSS THE 1140 00:52:04,720 --> 00:52:05,320 GOVERNMENT INCLUDING SOME 1141 00:52:05,320 --> 00:52:08,760 AGENCIES ON THE COMMITTEE AND 1142 00:52:08,760 --> 00:52:10,800 NOT ON THE IACC AS WELL. 1143 00:52:10,800 --> 00:52:12,560 THE MAIN THING I WANT TO 1144 00:52:12,560 --> 00:52:13,080 HIGHLIGHT. 1145 00:52:13,080 --> 00:52:14,000 SO WE HAVE INFORMATION IN THE 1146 00:52:14,000 --> 00:52:18,360 REPORT ABOUT THE ACTIVITIES OF 1147 00:52:18,360 --> 00:52:19,360 THE AGENCIES AND DEPARTMENTS IN 1148 00:52:19,360 --> 00:52:24,080 THE REPORT BUT WE ALSO HAVE 23 1149 00:52:24,080 --> 00:52:24,640 RECOMMENDATIONS THAT WERE 1150 00:52:24,640 --> 00:52:27,360 DEVELOPED AS A PART OF THIS 1151 00:52:27,360 --> 00:52:29,360 REPORT AND THE FEDERAL 1152 00:52:29,360 --> 00:52:31,080 INTERAGENCY WORK GROUP FOR 1153 00:52:31,080 --> 00:52:34,160 AUTISM AN ALL FEDERAL WORK GROUP 1154 00:52:34,160 --> 00:52:37,160 FROM THE AGENCIES LISTED IN THE 1155 00:52:37,160 --> 00:52:39,400 SLIDES AHEAD OF THIS ONE 1156 00:52:39,400 --> 00:52:41,080 CONTRIBUTED TO PRODUCING THESE 1157 00:52:41,080 --> 00:52:42,760 RECOMMENDATIONS AND I DON'T KNOW 1158 00:52:42,760 --> 00:52:45,960 WHY 23 IS THE MAGIC NUMBER. 1159 00:52:45,960 --> 00:52:47,680 WE HAVE 23 RECOMMENDATIONS IN 1160 00:52:47,680 --> 00:52:51,120 THE STRATEGIC PLAN AND 23 IN THE 1161 00:52:51,120 --> 00:52:51,360 REPORT. 1162 00:52:51,360 --> 00:52:52,760 THIS RECOMMENDATIONS COVER SEVEN 1163 00:52:52,760 --> 00:52:54,320 AREAS THAT WERE ASKED FOR IF THE 1164 00:52:54,320 --> 00:52:58,120 LAW AND THOSE ARE LISTED HERE 1165 00:52:58,120 --> 00:53:01,360 INCLUDING INTERDISCIPLINARY 1166 00:53:01,360 --> 00:53:06,000 COORDINATION AND SCREENING AND 1167 00:53:06,000 --> 00:53:06,920 DIAGNOSIS AND EMERGENCY AND 1168 00:53:06,920 --> 00:53:11,560 ACUTE CARE, TREATMENT AND 1169 00:53:11,560 --> 00:53:13,680 CO-OCCURRING MENTAL HEALTH 1170 00:53:13,680 --> 00:53:15,880 CONDITIONS, CAREGIVER SUPPORTS 1171 00:53:15,880 --> 00:53:19,520 AND QUALITY OF LIFE. 1172 00:53:19,520 --> 00:53:20,800 THE 23 RECOMMENDATIONS I WON'T 1173 00:53:20,800 --> 00:53:22,760 READ THEM ALL OUT FOR YOU AS I 1174 00:53:22,760 --> 00:53:23,680 KNOW WE HAVE A LOT OF TO DO 1175 00:53:23,680 --> 00:53:25,640 TODAY BUT I DID WANT TO LIST 1176 00:53:25,640 --> 00:53:27,920 THEM ON THE SLIDES SO YOU CAN GO 1177 00:53:27,920 --> 00:53:30,000 BACK AND READ THEM IF YOU AREN'T 1178 00:53:30,000 --> 00:53:32,720 ABLE TO ACCESS THE REPORT RIGHT 1179 00:53:32,720 --> 00:53:33,280 AWAY. 1180 00:53:33,280 --> 00:53:34,760 BRIEFLY THE RECOMMENDATIONS 1181 00:53:34,760 --> 00:53:36,560 COVER DEVELOPING BEST PRACTICE 1182 00:53:36,560 --> 00:53:38,720 GUIDELINES FOR INTERDISCIPLINARY 1183 00:53:38,720 --> 00:53:41,480 COORDINATION ACROSS SERVICE 1184 00:53:41,480 --> 00:53:42,360 PROVIDERS, INCREASING 1185 00:53:42,360 --> 00:53:44,360 UNDERSTANDING OF AND ACCESS TO 1186 00:53:44,360 --> 00:53:46,080 SYSTEMS PROVIDING SERVICES AND 1187 00:53:46,080 --> 00:53:47,520 SUPPORTS. 1188 00:53:47,520 --> 00:53:50,760 CREATING COORDINATED SYSTEMS OF 1189 00:53:50,760 --> 00:53:53,520 MENTAL HEALTH SUPPORTS IN 1190 00:53:53,520 --> 00:53:59,960 VARIOUS SETTINGS. 1191 00:53:59,960 --> 00:54:01,120 DEVELOPING INTERSTATE AND 1192 00:54:01,120 --> 00:54:03,520 INTRASTATE HEALTH INFORMATION 1193 00:54:03,520 --> 00:54:05,080 EXCHANGES AND LEARNING FROM 1194 00:54:05,080 --> 00:54:06,600 EFFORTS AROUND THE WORLD THROUGH 1195 00:54:06,600 --> 00:54:10,560 VARIOUS ORGANIZATIONS, ENHANCING 1196 00:54:10,560 --> 00:54:12,960 DELIVERY OF COMMUNITY-BASED 1197 00:54:12,960 --> 00:54:13,240 SERVICES. 1198 00:54:13,240 --> 00:54:14,840 DEVELOPING EFFECTIVE APPROACH 1199 00:54:14,840 --> 00:54:17,280 FOR EARLY IDENTIFICATION AND 1200 00:54:17,280 --> 00:54:20,960 IDENTIFICATION IN ADULTS. 1201 00:54:20,960 --> 00:54:22,560 DEVELOPING BEHAVIORAL 1202 00:54:22,560 --> 00:54:25,120 INTERVENTIONS AND SUPPORTS IN 1203 00:54:25,120 --> 00:54:26,640 EDUCATIONAL SETTINGS. 1204 00:54:26,640 --> 00:54:28,200 DEVELOPING AND VALIDATING 1205 00:54:28,200 --> 00:54:30,440 MEASURES OF SOCIAL AND 1206 00:54:30,440 --> 00:54:31,240 BEHAVIORAL FUNCTIONING. 1207 00:54:31,240 --> 00:54:33,320 PROFESSIONAL PROGRAMS TO TRAIN 1208 00:54:33,320 --> 00:54:33,960 EDUCATORS, HEALTH CARE WORKERS 1209 00:54:33,960 --> 00:54:37,480 AND SERVICE PROVIDERS. 1210 00:54:37,480 --> 00:54:38,200 RESEARCH ON COMMUNICATION NEEDS 1211 00:54:38,200 --> 00:54:40,720 OF INDIVIDUALS ON THE SPECTRUM 1212 00:54:40,720 --> 00:54:42,160 AND IMPROVING ACCESS TO TOOLS 1213 00:54:42,160 --> 00:54:46,240 FOR COMMUNICATION. 1214 00:54:46,240 --> 00:54:51,160 DEVELOPING AND DISSEMINATING 1215 00:54:51,160 --> 00:54:54,400 HEALTH LITERACY RESOURCES TO 1216 00:54:54,400 --> 00:54:56,280 EMPOWER INDIVIDUALS TO TAKE 1217 00:54:56,280 --> 00:54:58,360 CONTROL OF THEIR HEALTH AND BE 1218 00:54:58,360 --> 00:54:59,720 AWARE OF EXISTING FEDERAL 1219 00:54:59,720 --> 00:55:04,200 POLICIES TO TAKE ADVANTAGE OF TO 1220 00:55:04,200 --> 00:55:06,200 HELP AUTISTIC INDIVIDUALS AND 1221 00:55:06,200 --> 00:55:09,520 REDUCING GAPS IN MENTAL HEALTH 1222 00:55:09,520 --> 00:55:11,760 SERVICES AND PRIMARY CARE. 1223 00:55:11,760 --> 00:55:17,160 ADDRESSING HEALTH CARE 1224 00:55:17,160 --> 00:55:17,440 DISPARITIES. 1225 00:55:17,440 --> 00:55:19,160 INCREASING PROVIDER AWARENESS 1226 00:55:19,160 --> 00:55:20,720 TOOLS AND TRAINING AND 1227 00:55:20,720 --> 00:55:22,320 CO-OCCURRING MENTAL AND 1228 00:55:22,320 --> 00:55:23,800 BEHAVIORAL HEALTH CONDITIONS AND 1229 00:55:23,800 --> 00:55:26,080 CREATING TAILORED SUPPORTS FOR 1230 00:55:26,080 --> 00:55:27,520 PEOPLE IN THESE AREAS. 1231 00:55:27,520 --> 00:55:29,120 DEVELOPING AND IMPROVING MENTAL 1232 00:55:29,120 --> 00:55:33,480 HEALTH AND PHARMACOLOGIC 1233 00:55:33,480 --> 00:55:34,080 INTERVENTIONS FOR PEOPLE 1234 00:55:34,080 --> 00:55:35,800 EXPERIENCING MAJOR CHALLENGES. 1235 00:55:35,800 --> 00:55:39,320 BEST PRACTICES RELATED TO 1236 00:55:39,320 --> 00:55:41,280 PERSON-CENTERED APPROACHES FOR 1237 00:55:41,280 --> 00:55:41,880 WANDERING. 1238 00:55:41,880 --> 00:55:44,480 ENHANCING SUPPORTS AND SERVICES 1239 00:55:44,480 --> 00:55:46,880 FOR CAREGIVERS, ACTIVITIES 1240 00:55:46,880 --> 00:55:48,240 RESEARCH AND RESOURCES THAT 1241 00:55:48,240 --> 00:55:49,840 CONTRIBUTE TO IMPROVING THE 1242 00:55:49,840 --> 00:55:52,240 OVERALL WELL BEING OF PEOPLE ON 1243 00:55:52,240 --> 00:55:53,600 THE AUTISM SPECTRUM FROM ACROSS 1244 00:55:53,600 --> 00:55:54,440 DIFFERENT AREAS THAT CONTRIBUTE 1245 00:55:54,440 --> 00:55:57,160 TO WELL BEING. 1246 00:55:57,160 --> 00:55:58,680 STRATEGIES TO PREPARE 1247 00:55:58,680 --> 00:56:01,160 ADOLESCENTS AND ADULTS FOR 1248 00:56:01,160 --> 00:56:02,400 GAINFUL EMPLOYMENT AND FOSTER 1249 00:56:02,400 --> 00:56:07,080 ANG SAYS TO CAREER PATHWAYS 1250 00:56:07,080 --> 00:56:09,920 WHICH HELPS WITH OVERALL WELL 1251 00:56:09,920 --> 00:56:10,160 BEING. 1252 00:56:10,160 --> 00:56:12,040 AND GATHERING ADDITIONAL 1253 00:56:12,040 --> 00:56:13,200 POPULATION-BASED DATA TO HELP 1254 00:56:13,200 --> 00:56:15,320 BETTER UNDERSTAND PREVENT AND 1255 00:56:15,320 --> 00:56:17,600 REDUCE CAUSES OF PREMATURE 1256 00:56:17,600 --> 00:56:19,840 MORTALITY. 1257 00:56:19,840 --> 00:56:22,160 THAT WAS A QUICK RUN DOWN. 1258 00:56:22,160 --> 00:56:22,800 THERE'S MORE INFORMATION IN THE 1259 00:56:22,800 --> 00:56:29,560 REPORT. 1260 00:56:29,560 --> 00:56:35,200 THIS IS AVAILABLE ONLINE ON OUR 1261 00:56:35,200 --> 00:56:35,440 WEBSITE. 1262 00:56:35,440 --> 00:56:36,680 NEXT I'M GOING TO MOVE TO 1263 00:56:36,680 --> 00:56:41,480 FEDERAL ACTIVITIES TO SHARE 1264 00:56:41,480 --> 00:56:44,160 BRIEF UPDATES PERFECT PARTS OF 1265 00:56:44,160 --> 00:56:49,240 PERFECTLY COMMITTEE S AND 1266 00:56:49,240 --> 00:56:51,920 ENTITIES YOU MAY NO HEAR ABOUT 1267 00:56:51,920 --> 00:56:52,480 WORK GOING ON. 1268 00:56:52,480 --> 00:56:57,440 PRESIDENT BIDEN APPOINTED THE 1269 00:56:57,440 --> 00:56:59,000 U.S. SPECIAL ADVISORY ON 1270 00:56:59,000 --> 00:56:59,680 INTERNATIONAL DISABILITY RIGHTS 1271 00:56:59,680 --> 00:57:02,560 WHICH REINSTATED THIS ROLE TO 1272 00:57:02,560 --> 00:57:05,800 WORK ON FOREIGN DIPLOMACY AND 1273 00:57:05,800 --> 00:57:06,800 ASSISTANCE TO PROTECT THE RIGHTS 1274 00:57:06,800 --> 00:57:10,960 OF PEOPLE WITH DISABILITIES 1275 00:57:10,960 --> 00:57:12,880 AROUND THE WORLD AND A 1276 00:57:12,880 --> 00:57:13,440 PROCLAMATION ON THE 1277 00:57:13,440 --> 00:57:14,760 INTERNATIONAL DAY OF PERSONS 1278 00:57:14,760 --> 00:57:15,360 WITH DISABILITIES. 1279 00:57:15,360 --> 00:57:16,960 THE LINK ARE PROVIDED HERE AND 1280 00:57:16,960 --> 00:57:18,800 IN YOUR MATERIALS. 1281 00:57:18,800 --> 00:57:23,160 AS OUR OFFICE WAS LOOKING AT 1282 00:57:23,160 --> 00:57:24,720 INFORMATION FOR PORTFOLIO 1283 00:57:24,720 --> 00:57:26,840 ANALYSIS, WE LEARNED THE DEFENSE 1284 00:57:26,840 --> 00:57:28,120 ADVANCED RESEARCH PROJECTS 1285 00:57:28,120 --> 00:57:30,000 AGENCY, OR DARPA PART OF THE 1286 00:57:30,000 --> 00:57:31,800 DEPARTMENT OF DEFENSE, WHICH IS 1287 00:57:31,800 --> 00:57:33,520 ON OUR COMMITTEE BUT DARPA 1288 00:57:33,520 --> 00:57:35,520 SPECIFICALLY IS NOT ON THE 1289 00:57:35,520 --> 00:57:38,840 COMMITTEE, FUNDED A RECENT 1290 00:57:38,840 --> 00:57:41,960 PROJECT ON AUTISM AND WANTED TO 1291 00:57:41,960 --> 00:57:45,320 GIVE YOU AN UPDATE ON THE RECENT 1292 00:57:45,320 --> 00:57:46,920 PROJECT APPLYING MACHINE 1293 00:57:46,920 --> 00:57:53,080 LEARNING TO -- TO APPLY 1294 00:57:53,080 --> 00:57:55,520 SCREENING AS AN EARLY TOOL AND 1295 00:57:55,520 --> 00:57:57,760 INCREASE ITS ABILITY TO IDENTIFY 1296 00:57:57,760 --> 00:57:59,440 PEOPLE ON THE SPECTRUM AS WELL 1297 00:57:59,440 --> 00:58:01,160 AS POTENTIALLY REDUCING 1298 00:58:01,160 --> 00:58:08,000 DISPARITIES. 1299 00:58:08,000 --> 00:58:09,960 THE NATIONAL SCIENCE COMMITTEE 1300 00:58:09,960 --> 00:58:13,160 HAS A COUPLE RECENT OR CURRENT 1301 00:58:13,160 --> 00:58:15,360 ANNOUNCEMENTS, FUNDING 1302 00:58:15,360 --> 00:58:17,080 ANNOUNCEMENTS OUT. 1303 00:58:17,080 --> 00:58:19,720 THE NSF CONVERGENCE ACCELERATOR 1304 00:58:19,720 --> 00:58:21,120 PROGRAM NAMED ENHANCING 1305 00:58:21,120 --> 00:58:23,320 OPPORTUNITIES AS A THEME FOR 1306 00:58:23,320 --> 00:58:26,800 THIS YEAR AND SO THEY ARE ACCEPT 1307 00:58:26,800 --> 00:58:29,960 ACCEPTING APPLICATION AND THIS 1308 00:58:29,960 --> 00:58:33,160 INCLUDES COMMUNICATION AND 1309 00:58:33,160 --> 00:58:39,680 ASSISTIVE TECHNOLOGIES AND 1310 00:58:39,680 --> 00:58:42,080 CALLING FOR RESEARCH INSTITUTES 1311 00:58:42,080 --> 00:58:44,480 AND EXPANDING EDUCATIONAL UP THE 1312 00:58:44,480 --> 00:58:49,280 AND IMPROVE OUTCOMES THAT FOCUS 1313 00:58:49,280 --> 00:58:51,960 ON ARTIFICIAL TECHNOLOGY AND 1314 00:58:51,960 --> 00:58:56,920 INCLUDING THOSE PEOPLE WITH 1315 00:58:56,920 --> 00:58:57,840 DISABILITIES. 1316 00:58:57,840 --> 00:58:59,040 THE NATIONAL COUNCIL ON 1317 00:58:59,040 --> 00:59:00,760 DISABILITY DID A COUPLE THINGS. 1318 00:59:00,760 --> 00:59:02,920 THEY HAVE A NEW REPORT ON THE 1319 00:59:02,920 --> 00:59:06,400 IMPACT OF COVID-19 ON PEOPLE 1320 00:59:06,400 --> 00:59:07,760 WITH DISABILITIES YOU'LL WANT 1321 00:59:07,760 --> 00:59:10,360 LOOK AT ISSUED IN OCTOBER AND 1322 00:59:10,360 --> 00:59:14,120 SENT A LETTER THE LEADERS AT HE 1323 00:59:14,120 --> 00:59:19,080 NIH HAD AND THE AGENCY OF HEALTH 1324 00:59:19,080 --> 00:59:22,680 CARE AND QUALITY AND CONSIDER 1325 00:59:22,680 --> 00:59:25,040 DESIGNATING PEOPLE WITH THESE 1326 00:59:25,040 --> 00:59:28,640 DISPARITIES AS A HEALTH 1327 00:59:28,640 --> 00:59:34,440 DISPARITY POPULATION. 1328 00:59:34,440 --> 00:59:37,120 THERE'S A NEW EVACUATE PLAN WITH 1329 00:59:37,120 --> 00:59:40,400 WORK ONGOING. 1330 00:59:40,400 --> 00:59:41,240 THE INTERAGENCY COMMITTEE ON 1331 00:59:41,240 --> 00:59:43,960 DISABILITY HAS A TOOL KIT ON 1332 00:59:43,960 --> 00:59:45,520 ACCESS AND QUALITY ON PEOPLE 1333 00:59:45,520 --> 00:59:46,360 WITH DISABILITIES AND THERE'S 1334 00:59:46,360 --> 00:59:48,240 THREE NEW THEMES THEY HAVE 1335 00:59:48,240 --> 00:59:49,120 IDENTIFIED FOR. 1336 00:59:49,120 --> 00:59:55,040 ACTIVITIES INCLUDING EQUITY AND 1337 00:59:55,040 --> 00:59:57,320 DISABILITY AND COVID-19 AND 1338 00:59:57,320 --> 01:00:02,720 DISABILITY STATISTICS AND HAVE 1339 01:00:02,720 --> 01:00:10,080 WEBINARS AVAILABLE. 1340 01:00:10,080 --> 01:00:13,080 THE IT RAISE FAMILY CAREGIVER 1341 01:00:13,080 --> 01:00:15,480 ADVISORY COUNCIL WILL HOLD THEIR 1342 01:00:15,480 --> 01:00:17,360 FIRST JOINT MEETING TO SUPPORT 1343 01:00:17,360 --> 01:00:18,520 GRANDPARENTS RAISING 1344 01:00:18,520 --> 01:00:20,600 GRANDCHILDREN IN JANUARY. 1345 01:00:20,600 --> 01:00:22,200 ON JANUARY 25 AND WE PROVIDED 1346 01:00:22,200 --> 01:00:23,040 THE LINK IN CASE ANYONE'S 1347 01:00:23,040 --> 01:00:28,240 INTERESTED IN THAT. 1348 01:00:28,240 --> 01:00:29,720 THE INTERDEPARTMENTAL SERIOUS 1349 01:00:29,720 --> 01:00:32,240 MENTAL ILLNESS COORDINATING 1350 01:00:32,240 --> 01:00:32,920 COMMITTEE DISCUSS THEIR RECENT 1351 01:00:32,920 --> 01:00:37,040 REPORT TO CONGRESS AT THEIR LAST 1352 01:00:37,040 --> 01:00:40,360 MEETING IN DECEMBER. 1353 01:00:40,360 --> 01:00:42,640 THE FEDERAL COMMUNICATION 1354 01:00:42,640 --> 01:00:44,320 COMMISSION HAS AN ADVISORY 1355 01:00:44,320 --> 01:00:48,360 COMMITTEE AND HAVE A SET OF 1356 01:00:48,360 --> 01:00:51,360 RECOMMENDATIONS FROM CALLED 1357 01:00:51,360 --> 01:00:53,480 CONCERNS AND LESSONS LEARNED 1358 01:00:53,480 --> 01:00:54,200 REGARDING COMMUNICATION ACCESS 1359 01:00:54,200 --> 01:00:55,160 FOR PEOPLE WITH DISABILITIES 1360 01:00:55,160 --> 01:00:56,760 DURING THE PANDEMIC AND THAT CAN 1361 01:00:56,760 --> 01:01:01,280 BE ACCESSED ONLINE AS A PDP. 1362 01:01:01,280 --> 01:01:09,120 -- PDF AND THREE OTHER 1363 01:01:09,120 --> 01:01:12,080 NON-GOVERNMENT ACTIVITIES AND P 1364 01:01:12,080 --> 01:01:13,560 CORI HAD 2019 LEGISLATION THAT 1365 01:01:13,560 --> 01:01:16,120 ASKED THEM TO INCLUDE RESEARCH 1366 01:01:16,120 --> 01:01:17,480 ON INTELLECTUAL AND DEVELOPMENT 1367 01:01:17,480 --> 01:01:18,760 DISABILITIES AS A PRIORITY TOPIC 1368 01:01:18,760 --> 01:01:20,720 AND THEY RECENTLY HOSTED A 1369 01:01:20,720 --> 01:01:22,480 COUPLE WORK SHOPS ON THIS TOPIC 1370 01:01:22,480 --> 01:01:25,080 AND THEY HAVE A CURRENT FUNDING 1371 01:01:25,080 --> 01:01:26,920 OPPORTUNITY ANNOUNCEMENT CALLED 1372 01:01:26,920 --> 01:01:28,360 COMPARATIVE EFFECTIVENESS OF 1373 01:01:28,360 --> 01:01:30,560 INTERVENTIONS TARGETING MENTAL 1374 01:01:30,560 --> 01:01:32,000 HEALTH CONDITIONS IN INDIVIDUALS 1375 01:01:32,000 --> 01:01:37,080 WITH INTELLECTUAL AND 1376 01:01:37,080 --> 01:01:39,800 DEVELOPMENT AA AAL DISABILITIES AND 1377 01:01:39,800 --> 01:01:44,200 ANYONE WHO IS INTERESTED IN 1378 01:01:44,200 --> 01:01:45,440 COMMENTING ON THE RESEARCH 1379 01:01:45,440 --> 01:01:47,360 AGENDA CAN ACCESS WITH THE LINK 1380 01:01:47,360 --> 01:01:49,720 AND YOU'RE WELCOME TO PROVIDE 1381 01:01:49,720 --> 01:01:51,760 THE COMMENTS AND THE AMERICAN 1382 01:01:51,760 --> 01:01:53,360 ACADEMY OF PEDIATRICS ISSUED A 1383 01:01:53,360 --> 01:01:54,720 REPORT ON PROMOTING THE 1384 01:01:54,720 --> 01:01:56,680 PARTICIPATION OF CHILDREN AND 1385 01:01:56,680 --> 01:01:57,520 ADULTS WITH DISABILITY AND 1386 01:01:57,520 --> 01:01:59,600 SPORTS AND RECREATION AND 1387 01:01:59,600 --> 01:02:01,040 PHYSICAL ACTIVITY IN THE JOURNAL 1388 01:02:01,040 --> 01:02:02,320 OF PEDIATRICS IN DECEMBER AND 1389 01:02:02,320 --> 01:02:03,560 WANTED TO POINT THAT OUT TO 1390 01:02:03,560 --> 01:02:04,160 ANYONE WHO MAY BE INTERESTED IN 1391 01:02:04,160 --> 01:02:06,560 THAT. 1392 01:02:06,560 --> 01:02:08,160 AND LAST THE NATIONAL ACADEMIES 1393 01:02:08,160 --> 01:02:09,720 OF SCIENCES, ENGINEERING AND 1394 01:02:09,720 --> 01:02:12,000 MEDICINE HOSTED A RECENT 1395 01:02:12,000 --> 01:02:13,480 WORKSHOP CALLED CHALLENGES AND 1396 01:02:13,480 --> 01:02:16,640 OPPORTUNITIES FOR CREATING AN 1397 01:02:16,640 --> 01:02:22,360 OPTIMAL CARE SYSTEM FOR 1398 01:02:22,360 --> 01:02:24,360 INDIVIDUALS WITH INTELLECTUAL 1399 01:02:24,360 --> 01:02:28,440 AND DEVELOPMENT DISABILITIES. 1400 01:02:28,440 --> 01:02:29,480 THIS IS A QUICK RUN DOWN THAT 1401 01:02:29,480 --> 01:02:31,000 MAY BE RELEVANT TO US AS WE WORK 1402 01:02:31,000 --> 01:02:38,960 ON THE EVACUATE PLAN AND POR YOU 1403 01:02:38,960 --> 01:02:41,160 FOR YOU ALL AND HAPPY IT ANSWER 1404 01:02:41,160 --> 01:02:54,800 QUESTIONS IF ANYONE HAS ANY. 1405 01:02:54,800 --> 01:02:56,640 >> WE'LL GO TO OUR PLANNED 1406 01:02:56,640 --> 01:02:56,960 BREAK. 1407 01:02:56,960 --> 01:02:58,680 WE'LL TAKE A 10 MINUTE BREAK. 1408 01:02:58,680 --> 01:03:01,360 WE RECOGNIZE ZOOM ALL DAY CAN BE 1409 01:03:01,360 --> 01:03:02,280 GRUELING SO ENCOURAGE EVERYONE 1410 01:03:02,280 --> 01:03:03,760 TO USE THIS OPPORTUNITY TO GET 1411 01:03:03,760 --> 01:03:06,040 UP, WALK AROUND AND GET A DRINK, 1412 01:03:06,040 --> 01:03:08,320 TAKE CARE OF YOURSELF AND WE'LL 1413 01:03:08,320 --> 01:03:13,600 SEE YOU BACK AT 11:13 FOR 1414 01:03:13,600 --> 01:03:14,560 RESUMING WITH SUSAN WITH IACC 1415 01:03:14,560 --> 01:03:20,600 COMMITTEE BUSINESS. 1416 01:03:20,600 --> 01:03:22,600 >> WE'LL START ABOUT IACC 1417 01:03:22,600 --> 01:03:24,120 COMMITTEE BUSINESS NOW. 1418 01:03:24,120 --> 01:03:25,720 SO FOR BUSINESS TODAY, WE ARE 1419 01:03:25,720 --> 01:03:28,160 GOING TO GIVE YOU A BELIEVE 1420 01:03:28,160 --> 01:03:30,960 PRESENTATION ON THE AUTISM 1421 01:03:30,960 --> 01:03:31,680 RESEARCH DATABASE. 1422 01:03:31,680 --> 01:03:33,120 THIS WAS REQUESTED AS SOMETHING 1423 01:03:33,120 --> 01:03:34,120 TO HELP OUR COMMITTEE MEMBERS 1424 01:03:34,120 --> 01:03:36,920 UNDERSTAND HOW THEY CAN ACCESS 1425 01:03:36,920 --> 01:03:40,080 INFORMATION ON THE PROJECTS THAT 1426 01:03:40,080 --> 01:03:42,120 OUR OFFICE COLLECTS ON RESEARCH. 1427 01:03:42,120 --> 01:03:47,400 SO WE WILL HAVE SOMEONE FROM OUR 1428 01:03:47,400 --> 01:03:52,080 TEAM DR. FERARA WILL PRESENT AND 1429 01:03:52,080 --> 01:03:53,200 TALK ABOUT THE STRATEGIC PLAN 1430 01:03:53,200 --> 01:03:53,920 UPDATE TODAY. 1431 01:03:53,920 --> 01:03:55,760 AS YOU KNOW, WE DID A PUBLIC 1432 01:03:55,760 --> 01:03:58,640 REQUEST FOR INFORMATION TO GET 1433 01:03:58,640 --> 01:03:59,360 OPINIONS FROM THE COMMUNITY 1434 01:03:59,360 --> 01:04:05,120 ABOUT WHAT THEY WOULD LIKE TO 1435 01:04:05,120 --> 01:04:09,280 SEE IN THE NEW STRATEGIC PLAN 1436 01:04:09,280 --> 01:04:12,000 AND GO THROUGH THE REVIEW AND 1437 01:04:12,000 --> 01:04:13,800 PUT TOGETHER MAJOR THEMES. 1438 01:04:13,800 --> 01:04:16,360 WE'LL TALK ABOUT AND WILL ALSO 1439 01:04:16,360 --> 01:04:17,520 TALK ABOUT THE BUDGET 1440 01:04:17,520 --> 01:04:18,520 RECOMMENDATION FOR THE STRATEGIC 1441 01:04:18,520 --> 01:04:20,760 PLAN SO WE'RE WORKING STEP BY 1442 01:04:20,760 --> 01:04:21,840 STEP THROUGH GETTING THE 1443 01:04:21,840 --> 01:04:22,800 STRATEGIC PLAN DONE AND LATER IN 1444 01:04:22,800 --> 01:04:24,240 THE DAY WE'RE GOING TO TALK 1445 01:04:24,240 --> 01:04:26,480 ABOUT THE SUMMARY OF 1446 01:04:26,480 --> 01:04:26,800 CONVENIENCES. 1447 01:04:26,800 --> 01:04:30,720 AND WE HAVE THE 2020 ADDITION AS 1448 01:04:30,720 --> 01:04:31,880 WELL AS THE 2021 WHICH WE'LL 1449 01:04:31,880 --> 01:04:33,720 TOUCH ON TODAY BUT MAINLY WORK 1450 01:04:33,720 --> 01:04:35,120 ON THE 2020. 1451 01:04:35,120 --> 01:04:39,840 SO FIRST, I'M GOING TO TURN IT 1452 01:04:39,840 --> 01:04:42,800 OVER TO DR. FERARA FROM MY 1453 01:04:42,800 --> 01:04:48,800 OFFICE TO PRESENT THE OFFICES 1454 01:04:48,800 --> 01:04:52,160 AUTISM RESEARCH DATABASE THAT 1455 01:04:52,160 --> 01:04:54,880 SHARES INFORMATION ABOUT THE 1456 01:04:54,880 --> 01:04:56,520 PORTFOLIO ANALYSIS. 1457 01:04:56,520 --> 01:04:57,080 KATRINA, WELCOME. 1458 01:04:57,080 --> 01:04:58,800 >>TODAY WE JUST WANT TO PROVIDE 1459 01:04:58,800 --> 01:05:03,200 A REALLY BRIEF INTRODUCTION TO 1460 01:05:03,200 --> 01:05:04,320 OUR AUTISM RESEARCH DATABASE. 1461 01:05:04,320 --> 01:05:08,160 THE ARD AS WE CALL IT. 1462 01:05:08,160 --> 01:05:13,080 AND WE WANT TO HIGHLIGHT SOME 1463 01:05:13,080 --> 01:05:15,280 WAYS WE MAY THINK BE USEFUL. 1464 01:05:15,280 --> 01:05:16,840 IT'S A PUBLICLY AVAILABLE 1465 01:05:16,840 --> 01:05:19,080 RESOURCE THAT PROVIDED 1466 01:05:19,080 --> 01:05:20,960 COMPREHENSIVE INFORMATION ABOUT 1467 01:05:20,960 --> 01:05:22,800 THE STATUS OF ALL OF AUTISM OF 1468 01:05:22,800 --> 01:05:25,640 FUNDING AMONG FEDERAL AGENCIES 1469 01:05:25,640 --> 01:05:29,200 AND PRIVATE ORGANIZATIONS. 1470 01:05:29,200 --> 01:05:31,320 AND IT'S A TOOL THE IACC CAN USE 1471 01:05:31,320 --> 01:05:33,280 AS THEY TAKE OF RESEARCH AND 1472 01:05:33,280 --> 01:05:34,520 PRIORITY AREAS TO HIGHLIGHT IN 1473 01:05:34,520 --> 01:05:36,120 THE UPCOMING STRATEGIC PLAN 1474 01:05:36,120 --> 01:05:40,480 UPDATE WHICH WE'LL TALK ABOUT IN 1475 01:05:40,480 --> 01:05:41,600 A BIT. 1476 01:05:41,600 --> 01:05:44,200 THE ARD IS AVAILABLE ON THE 1477 01:05:44,200 --> 01:05:46,040 WEBSITE FROM THE IACC HOME PAGE 1478 01:05:46,040 --> 01:05:49,440 YOU CAN FIND IT UNDER THE TAB 1479 01:05:49,440 --> 01:05:50,240 FOR FUNDING THAT'S SHOWN HERE 1480 01:05:50,240 --> 01:06:07,040 WITH THE RED ARROW. 1481 01:06:07,040 --> 01:06:09,640 THE COMPLETE DATA SET THAT WENT 1482 01:06:09,640 --> 01:06:12,560 INTO CREATING A REPORT GETS 1483 01:06:12,560 --> 01:06:13,600 UPLOADED TO THE ARD. 1484 01:06:13,600 --> 01:06:17,080 FOR EVERY SINGLE PROJECT THAT'S 1485 01:06:17,080 --> 01:06:18,040 INCLUDED IN THE REPORT, THE 1486 01:06:18,040 --> 01:06:20,800 FOLLOWING ARE LISTED IN THE ARD. 1487 01:06:20,800 --> 01:06:22,840 THE FUNDING AMOUNT FOR THE 1488 01:06:22,840 --> 01:06:25,400 PROJECT, THE FUNDER, THE 1489 01:06:25,400 --> 01:06:27,120 PRINCIPLE INVESTIGATOR OF THE 1490 01:06:27,120 --> 01:06:29,720 WORK AND A DESCRIPTION OF THE 1491 01:06:29,720 --> 01:06:30,800 PROJECTS SO YOU CAN LEARN MORE 1492 01:06:30,800 --> 01:06:34,720 ABOUT THE AIMS AND THE METHODS 1493 01:06:34,720 --> 01:06:36,320 OF THE RESEARCH. 1494 01:06:36,320 --> 01:06:37,080 THE INSTITUTION AND LOCATION 1495 01:06:37,080 --> 01:06:39,200 WHERE THE PROJECT WAS CARRIED 1496 01:06:39,200 --> 01:06:42,600 OUT AND ALSO THE STRATEGIC PLAN 1497 01:06:42,600 --> 01:06:45,040 QUESTION OBJECTIVE AND SUB 1498 01:06:45,040 --> 01:06:55,840 CATEGORY THAT WORK ALIGNS WITH. 1499 01:06:55,840 --> 01:06:58,080 HERE'S AN EXAMPLE OF WHAT AN 1500 01:06:58,080 --> 01:06:58,920 INDIVIDUAL PROJECT STAGE LOOKS 1501 01:06:58,920 --> 01:07:00,200 LIKE WHEN YOU'RE IN THE ARD. 1502 01:07:00,200 --> 01:07:06,280 YOU CAN SEE ALL THE DETAILS 1503 01:07:06,280 --> 01:07:09,840 THERE INCLUDING LINKS TO THE 1504 01:07:09,840 --> 01:07:20,360 EXTERNAL FUNDER FOR THE PROJECT. 1505 01:07:20,360 --> 01:07:22,640 TO ILLUSTRATE THE AMOUNT OF DATA 1506 01:07:22,640 --> 01:07:24,320 THAT GOES INTO EACH PORTFOLIO 1507 01:07:24,320 --> 01:07:26,600 ANALYSIS REPORT CAN BE PRETTY 1508 01:07:26,600 --> 01:07:26,840 SPECIAL. 1509 01:07:26,840 --> 01:07:29,480 FOR THE YEAR 2018, THIS INCLUDED 1510 01:07:29,480 --> 01:07:32,200 DATA FROM 23 DIFFERENT AGENCIES 1511 01:07:32,200 --> 01:07:34,360 AND ORGANIZATIONS. 1512 01:07:34,360 --> 01:07:38,480 THIS TOTALLED OVER $394 MILLION 1513 01:07:38,480 --> 01:07:39,760 AND OVER 1500 DIFFERENT 1514 01:07:39,760 --> 01:07:40,040 PROJECTS. 1515 01:07:40,040 --> 01:07:41,240 THESE COVER ALL THE OBJECTIVE 1516 01:07:41,240 --> 01:07:43,600 AREAS IN OUR STRATEGIC PLAN. 1517 01:07:43,600 --> 01:07:46,160 SO THE ARD IS REALLY A USER 1518 01:07:46,160 --> 01:07:50,280 FRIENDLY AND INTERACTIVE WAY TO 1519 01:07:50,280 --> 01:07:51,960 VIEW AND UNDERSTAND ALL THIS BIG 1520 01:07:51,960 --> 01:07:54,080 AMOUNT OF DATA AND WE HAVE DATA 1521 01:07:54,080 --> 01:07:56,400 THAT GOES BACK OVER A DECADE SO 1522 01:07:56,400 --> 01:08:01,080 ON THE WEBSITE HERE YOU CAN SEE, 1523 01:08:01,080 --> 01:08:02,920 YOU CAN SELECT WHAT FISCAL YEAR 1524 01:08:02,920 --> 01:08:03,800 YOUR INTERESTED IN GOING IN 1525 01:08:03,800 --> 01:08:12,120 GOING BACK TO 2008. 1526 01:08:12,120 --> 01:08:13,720 IN THE SLIDES COMING UP I'LL 1527 01:08:13,720 --> 01:08:17,560 SHOW KEY FEATURES YOU CAN USE 1528 01:08:17,560 --> 01:08:43,320 FOR THE ARD. 1529 01:08:43,320 --> 01:08:48,480 SO THE ARD ALIGNS PROJECTS WITH 1530 01:08:48,480 --> 01:08:49,640 OBJECTIVES IN THE IACC STRATEGIC 1531 01:08:49,640 --> 01:08:49,840 PLAN. 1532 01:08:49,840 --> 01:08:52,240 IT PROVIDES AN ACCOUNT OF HOW 1533 01:08:52,240 --> 01:08:54,520 MUCH FUNDING HAS SUPPORTED 1534 01:08:54,520 --> 01:08:55,440 PROJECTS AND HIGHLIGHTS TRENDS 1535 01:08:55,440 --> 01:08:57,240 OVER THE YEARS. 1536 01:08:57,240 --> 01:09:00,320 THIS HAS BEEN USED BY THE IACC 1537 01:09:00,320 --> 01:09:04,240 TO HELP IN EFFORTS TO MONITOR 1538 01:09:04,240 --> 01:09:05,160 RESEARCH AND TRACK FUNDING MADE 1539 01:09:05,160 --> 01:09:06,760 FROM YEAR TO YEAR. 1540 01:09:06,760 --> 01:09:10,320 SO HERE YOU CAN SEE IN THE TAB 1541 01:09:10,320 --> 01:09:11,640 FOR STRATEGIC PLAN QUESTIONS, 1542 01:09:11,640 --> 01:09:14,560 THAT'S SHOWN WITH THE RED ARROW, 1543 01:09:14,560 --> 01:09:16,040 YOU CAN SEE THE PROPORTION OF 1544 01:09:16,040 --> 01:09:18,280 FUNDING THAT'S ALIGNED WITH EACH 1545 01:09:18,280 --> 01:09:20,120 OF THE DIFFERENT QUESTION AREAS. 1546 01:09:20,120 --> 01:09:24,240 SO HERE IN THIS PIE CHART FOR 1547 01:09:24,240 --> 01:09:27,200 2018 I'M SHOWING YOU HOW THAT 1548 01:09:27,200 --> 01:09:29,280 $394 MILLION WAS BROKEN DOWN 1549 01:09:29,280 --> 01:09:29,840 AMONG THE DIFFERENT QUESTION 1550 01:09:29,840 --> 01:09:37,240 AREA. 1551 01:09:37,240 --> 01:09:38,960 THERE'S ALSO INFORMATION BROKEN 1552 01:09:38,960 --> 01:09:45,480 DOWN BY FUNDER IN THE ARDs. 1553 01:09:45,480 --> 01:09:48,280 YOU CAN SEE THE TOTAL AMOUNT AND 1554 01:09:48,280 --> 01:09:50,520 DISTRIBUTION OF EACH FUNDER'S 1555 01:09:50,520 --> 01:09:51,600 PORTFOLIO ACROSS ALL THE 1556 01:09:51,600 --> 01:09:52,720 STRATEGIC PLAN QUESTION AREAS. 1557 01:09:52,720 --> 01:09:55,040 YOU MIGHT LOOK HERE IF YOU 1558 01:09:55,040 --> 01:09:57,960 WANTED TO SEE WHAT CERTAIN 1559 01:09:57,960 --> 01:09:59,160 RESEARCH AREAS WERE FOR 1560 01:09:59,160 --> 01:10:01,080 DIFFERENT FUNDERS. 1561 01:10:01,080 --> 01:10:02,360 THEN YOU CAN ALSO GET A 1562 01:10:02,360 --> 01:10:03,960 BREAKDOWN OF A PORTION OF 1563 01:10:03,960 --> 01:10:06,400 FUNDERS AND WHAT THEY'RE 1564 01:10:06,400 --> 01:10:08,200 CONTRIBUTING ACROSS ALL ASD 1565 01:10:08,200 --> 01:10:08,920 RESEARCH DOLLARS. 1566 01:10:08,920 --> 01:10:11,000 AGAIN, THAT'S WHAT I'M SHOWING 1567 01:10:11,000 --> 01:10:13,160 YOU HERE FOR 2018 FOR THAT $394 1568 01:10:13,160 --> 01:10:21,840 MILLION. 1569 01:10:21,840 --> 01:10:24,680 ALSO IN THE FUNDER TAB WE HAVE 1570 01:10:24,680 --> 01:10:25,400 HISTORICAL DATA. 1571 01:10:25,400 --> 01:10:26,680 FOR THE FUNDERS PARTICIPATING IN 1572 01:10:26,680 --> 01:10:28,680 THE REPORT FOR A LONG TIME, WE 1573 01:10:28,680 --> 01:10:30,680 HAVE DATA THAT GOES BACK TO 1574 01:10:30,680 --> 01:10:31,360 2008. 1575 01:10:31,360 --> 01:10:34,480 AND HERE I'M SHOWING YOU IN THIS 1576 01:10:34,480 --> 01:10:35,720 BAR CHART THE FUNDING HISTORY 1577 01:10:35,720 --> 01:10:38,480 FOR NIH SO YOU CAN LOOK AT THIS 1578 01:10:38,480 --> 01:10:41,640 AND SEE HOW FUNDING HAS 1579 01:10:41,640 --> 01:10:48,200 PROGRESSED OVER THE YEARS. 1580 01:10:48,200 --> 01:10:50,880 TO GET EVEN MORE DETAILED WE 1581 01:10:50,880 --> 01:10:54,520 HAVE A TAB FOR STRATEGIC PLAN 1582 01:10:54,520 --> 01:10:54,840 OBJECTIVES. 1583 01:10:54,840 --> 01:10:56,720 THESE ARE IMPORTANT AREAS WITHIN 1584 01:10:56,720 --> 01:11:00,680 EACH QUESTION AREA SO HERE I'M 1585 01:11:00,680 --> 01:11:01,280 SHOWING YOU THE TABLE FOR 1586 01:11:01,280 --> 01:11:04,680 QUESTION 1, WHICH IS ABOUT 1587 01:11:04,680 --> 01:11:05,400 SCREENING AND DIAGNOSIS AND THEN 1588 01:11:05,400 --> 01:11:08,800 YOU'LL GET A LISTING OF THE 1589 01:11:08,800 --> 01:11:10,520 DIFFERENT OBJECTIVE AREAS AND 1590 01:11:10,520 --> 01:11:13,560 YOU CAN CLICK ON THE PROJECTS 1591 01:11:13,560 --> 01:11:16,200 HERE AND THAT WILL POPULATE A 1592 01:11:16,200 --> 01:11:17,680 LIST OF ALL THOSE INDIVIDUAL 1593 01:11:17,680 --> 01:11:19,160 PROJECTS WITH THEIR DESCRIPTIONS 1594 01:11:19,160 --> 01:11:21,600 AND FUNDING AMOUNTS, ETCETERA. 1595 01:11:21,600 --> 01:11:24,560 YOU'LL ALSO GET A PIE CHART THAT 1596 01:11:24,560 --> 01:11:28,320 SHOWS YOU THE BREAKDOWN OF THE 1597 01:11:28,320 --> 01:11:30,280 PROPORTION OF THE DIFFERENT 1598 01:11:30,280 --> 01:11:31,280 OBJECTIVES AND HOW THEY 1599 01:11:31,280 --> 01:11:32,440 CONTRIBUTE TO THE TOTAL FUNDING 1600 01:11:32,440 --> 01:11:42,520 FOR THAT QUESTION AREA. 1601 01:11:42,520 --> 01:11:46,680 ANOTHER NEAT THING IN THE ARD IS 1602 01:11:46,680 --> 01:11:47,360 DATA BY GEOGRAPHIC LOCATION. 1603 01:11:47,360 --> 01:11:48,800 YOU CAN SEE WHERE PROJECTS ARE 1604 01:11:48,800 --> 01:11:51,280 TAKING PLACE, YOU CAN CLICK ON 1605 01:11:51,280 --> 01:11:53,200 THE MAP AND CLICK ON EACH STATE. 1606 01:11:53,200 --> 01:11:55,200 YOU'LL GET THE TOTAL FUNDING IN 1607 01:11:55,200 --> 01:11:56,600 THAT STATE AND A LIST OF ALL THE 1608 01:11:56,600 --> 01:12:00,840 PROJECT ARE HAPPENING THERE. 1609 01:12:00,840 --> 01:12:03,280 AND IN ADDITION TO THE U.S. WE 1610 01:12:03,280 --> 01:12:05,040 HAVE MAP OF THE WORLD BECAUSE 1611 01:12:05,040 --> 01:12:07,240 THERE ARE RESEARCH INVESTMENTS 1612 01:12:07,240 --> 01:12:10,360 THAT WE HAVE THROUGH OTHER 1613 01:12:10,360 --> 01:12:10,840 COUNTRIES SUPPORTING 1614 01:12:10,840 --> 01:12:11,480 INTERNATIONAL RESEARCH AND YOU 1615 01:12:11,480 --> 01:12:13,360 CAN CLICK ON THOSE COUNTRIES AND 1616 01:12:13,360 --> 01:12:14,480 GET A LIST OF THE PROJECTS THAT 1617 01:12:14,480 --> 01:12:22,280 ARE HAPPENING THERE. 1618 01:12:22,280 --> 01:12:24,280 ANOTHER COOL FEATURE IN THE ARD 1619 01:12:24,280 --> 01:12:28,000 IS THAT YOU CAN SEARCH BY ANY 1620 01:12:28,000 --> 01:12:30,280 KEY WORD OF YOUR CHOOSING. 1621 01:12:30,280 --> 01:12:31,280 YOU CAN TYPE IN THE SEARCH BOX 1622 01:12:31,280 --> 01:12:33,680 AT THE TOP. 1623 01:12:33,680 --> 01:12:36,440 YOU CAN TYPE IN THE KEY WORD 1624 01:12:36,440 --> 01:12:37,720 YOU'RE INTERESTED IN LOOKING FOR 1625 01:12:37,720 --> 01:12:39,320 AND WITHIN THAT YEAR YOU'LL GET 1626 01:12:39,320 --> 01:12:42,600 ALL THE PROJECT HAVE THAT TERM 1627 01:12:42,600 --> 01:12:45,560 IN THEIR TITLE OR ALSO IN THEIR 1628 01:12:45,560 --> 01:12:46,160 PROJECT DESCRIPTION. 1629 01:12:46,160 --> 01:12:49,000 SO HERE I'M SHOWING YOU THE 1630 01:12:49,000 --> 01:12:50,520 RESULTS FOR A KEY WORD SEARCH 1631 01:12:50,520 --> 01:12:52,960 FOR EPILEPSY FOR 2018 AND YOU 1632 01:12:52,960 --> 01:12:55,680 CAN SEE YOU GET A LIST OF 36 1633 01:12:55,680 --> 01:13:00,040 DIFFERENT PROJECT HAVE THAT TERM 1634 01:13:00,040 --> 01:13:03,200 AND THEN YOU CAN EITHER DOWNLOAD 1635 01:13:03,200 --> 01:13:04,880 THIS TO YOUR COMPUTER AND IN 1636 01:13:04,880 --> 01:13:14,520 EXCEL OR PDF FILE. 1637 01:13:14,520 --> 01:13:18,240 YOU CAN ALSO VIEW PROJECTS AS 1638 01:13:18,240 --> 01:13:22,880 ORGANIZED BY A PRINCIPLE 1639 01:13:22,880 --> 01:13:23,760 INVESTIGATOR. 1640 01:13:23,760 --> 01:13:30,160 HERE'S EXAMPLES FOR JOE PIVEN 1641 01:13:30,160 --> 01:13:32,720 AND YOU CAN EXPORT THIS TO AN 1642 01:13:32,720 --> 01:13:38,720 EXCEL OR PDF FILE. 1643 01:13:38,720 --> 01:13:42,000 LASTLY, I WANT TO DRAW YOUR 1644 01:13:42,000 --> 01:13:43,680 ATTENTION IT ANOTHER TAB IN THE 1645 01:13:43,680 --> 01:13:44,000 ARD. 1646 01:13:44,000 --> 01:13:45,600 EVERYTHING I'VE TOLD YOU ABOUT 1647 01:13:45,600 --> 01:13:46,440 IS IN THE UNITED STATES DATA TAB 1648 01:13:46,440 --> 01:13:49,400 AND WE ALSO HAVE A TAB FOR 1649 01:13:49,400 --> 01:13:49,960 INTERNATIONAL DATA. 1650 01:13:49,960 --> 01:13:53,400 AND THIS IS BASED ON A REPORT WE 1651 01:13:53,400 --> 01:13:56,520 PUT OUT IN 2016 WHERE WE 1652 01:13:56,520 --> 01:13:58,080 PARTNERED WITH THE U.K., CANADA 1653 01:13:58,080 --> 01:13:59,480 AND AUSTRALIA. 1654 01:13:59,480 --> 01:14:00,920 WE GOT DATA FROM OTHER COUNTRIES 1655 01:14:00,920 --> 01:14:03,760 TO LEARN MORE ABOUT THEIR OWN 1656 01:14:03,760 --> 01:14:07,280 INVESTMENTS IN ASD RESEARCH. 1657 01:14:07,280 --> 01:14:09,480 SO HERE WE HAVE THE DATA 1658 01:14:09,480 --> 01:14:12,200 ORGANIZED IN A SIMILAR WAY WITH 1659 01:14:12,200 --> 01:14:13,400 ALIGNMENT WITH THE STRATEGIC 1660 01:14:13,400 --> 01:14:14,200 PLAN QUESTIONS AND OBJECTIVES, 1661 01:14:14,200 --> 01:14:16,280 ETCETERA. 1662 01:14:16,280 --> 01:14:18,960 SO IN THE FUTURE, WE HOPE TO PUT 1663 01:14:18,960 --> 01:14:21,960 OUT OTHER REPORT LIKE THIS AND 1664 01:14:21,960 --> 01:14:24,080 HAVE INFORMATION FROM EVEN MORE 1665 01:14:24,080 --> 01:14:25,080 COUNTRIES REFLECTED IN THAT DATA 1666 01:14:25,080 --> 01:14:32,200 SET. 1667 01:14:32,200 --> 01:14:36,720 I WANT TO NOTE THIS IS A BRIEF 1668 01:14:36,720 --> 01:14:37,440 INTRODUCTION TO EVERYTHING IN 1669 01:14:37,440 --> 01:14:38,920 THE ARD. 1670 01:14:38,920 --> 01:14:40,880 JUST WANT TO DRAW YOUR ATTENTION 1671 01:14:40,880 --> 01:14:43,640 TO THE FACT THAT IN 2022 WE'RE 1672 01:14:43,640 --> 01:14:47,240 GOING TO PUBLISH OUR 2019-2020 1673 01:14:47,240 --> 01:14:48,640 PORTFOLIO ANALYSIS REPORT SO 1674 01:14:48,640 --> 01:14:50,440 WE'RE WORKING ON THAT NOW. 1675 01:14:50,440 --> 01:14:52,560 ONCE THAT REPORT'S OUT, WE'LL 1676 01:14:52,560 --> 01:14:54,720 UPLOAD ALL THAT NEW DATA TO THE 1677 01:14:54,720 --> 01:15:01,080 ARD AND IT WILL GET UPDATED. 1678 01:15:01,080 --> 01:15:02,280 THANK YOU VERY MUCH FOR YOUR 1679 01:15:02,280 --> 01:15:04,320 TIME AND APOLOGY FOR THE 1680 01:15:04,320 --> 01:15:04,920 TECHNICAL DIFFICULTIES AND IF 1681 01:15:04,920 --> 01:15:06,680 YOU HAVE QUESTIONS FOR THE ARD 1682 01:15:06,680 --> 01:15:08,480 OR PORTFOLIO ANALYSIS REPORT, 1683 01:15:08,480 --> 01:15:09,800 YOU CAN JUST SHOOT US AN E-MAIL 1684 01:15:09,800 --> 01:15:13,640 HERE. 1685 01:15:13,640 --> 01:15:43,720 THANK YOU. 1686 01:15:43,720 --> 01:15:44,480 >> ALICIA. 1687 01:15:44,480 --> 01:15:45,320 >> THANK YOU FOR PUTTING THIS 1688 01:15:45,320 --> 01:15:45,600 TOGETHER. 1689 01:15:45,600 --> 01:15:48,120 I KNOW IT'S A LABOR OF LOVE AND 1690 01:15:48,120 --> 01:15:50,840 A QUESTION FOR A USE OF THIS YOU 1691 01:15:50,840 --> 01:15:52,480 MAY NOT HAVE ANTICIPATED IS 1692 01:15:52,480 --> 01:15:56,160 TRACKING GRANTEES OVER TIME 1693 01:15:56,160 --> 01:15:57,280 BEING USEFUL. 1694 01:15:57,280 --> 01:15:59,280 I SEE EVERYTHING IS SELECTED BY 1695 01:15:59,280 --> 01:15:59,480 YEAR. 1696 01:15:59,480 --> 01:16:02,200 IS THERE A WAY TO MAKE IT SO YOU 1697 01:16:02,200 --> 01:16:05,520 HAVE A FIELD FOR LIKE ALL YEARS 1698 01:16:05,520 --> 01:16:09,160 AND SO THAT FUNDERS CAN TRACK 1699 01:16:09,160 --> 01:16:11,480 WHERE GRANTEES HAVE ALSO 1700 01:16:11,480 --> 01:16:13,640 RECEIVED FUNDING NOT JUST IN A 1701 01:16:13,640 --> 01:16:15,160 PARTICULAR YEAR BUT ACROSS YEARS 1702 01:16:15,160 --> 01:16:17,880 LIKE IF I DO A SEARCH FOR 1703 01:16:17,880 --> 01:16:19,280 GRANTEES IT'S ONLY FOUND IN THE 1704 01:16:19,280 --> 01:16:21,560 YEAR THAT PERSON WAS FUNDED. 1705 01:16:21,560 --> 01:16:23,960 DOES THAT MAKE SENSE? 1706 01:16:23,960 --> 01:16:25,280 CAN IT BE -- CAN THERE BE A 1707 01:16:25,280 --> 01:16:27,320 FIELD ADDED FOR ALL YEARS OR 1708 01:16:27,320 --> 01:16:29,080 SOMETHING LIKE THAT? 1709 01:16:29,080 --> 01:16:31,520 >> YES, WE DON'T HAVE THAT 1710 01:16:31,520 --> 01:16:33,080 CAPABILITY IN THERE RIGHT NOW 1711 01:16:33,080 --> 01:16:35,040 BUT WE COULD THINK ABOUT 1712 01:16:35,040 --> 01:16:36,040 BUILDING IN FOR THE FUTURE. 1713 01:16:36,040 --> 01:16:38,320 IF YOU WANTED THAT INFORMATION 1714 01:16:38,320 --> 01:16:42,840 RIGHT NOW, I WOULD SUGGEST 1715 01:16:42,840 --> 01:16:44,280 EXPORTING TO AN EXCEL FILE EACH 1716 01:16:44,280 --> 01:16:45,600 YEAR AND YOU THEN YOU CAN 1717 01:16:45,600 --> 01:16:47,000 COMBINE THE DATA ACROSS THE 1718 01:16:47,000 --> 01:16:47,280 YEARS. 1719 01:16:47,280 --> 01:16:48,840 THAT WOULD BE THE WAY TO GET 1720 01:16:48,840 --> 01:16:51,000 THAT INFORMATION QUICKLY BUT 1721 01:16:51,000 --> 01:16:52,560 IT'S DEFINITELY SOMETHING WE CAN 1722 01:16:52,560 --> 01:16:53,520 WORK ON INCORPORATING ON IN THE 1723 01:16:53,520 --> 01:16:57,600 FUTURE. 1724 01:16:57,600 --> 01:16:59,680 >> WE'RE HAPPY TO TAKE 1725 01:16:59,680 --> 01:17:04,200 SUGGESTIONS ON NEW FEATURES WE 1726 01:17:04,200 --> 01:17:06,160 CAN ADD. 1727 01:17:06,160 --> 01:17:08,280 AND OUR SENIOR WEB PROGRAMMERS 1728 01:17:08,280 --> 01:17:10,120 ARE ON THE MEETING AND FEEL FREE 1729 01:17:10,120 --> 01:17:10,680 TO SEND US SUGGESTIONS. 1730 01:17:10,680 --> 01:17:14,680 LARRY. 1731 01:17:14,680 --> 01:17:17,480 >> THANK YOU. 1732 01:17:17,480 --> 01:17:18,080 KATRINA, THANK YOU. 1733 01:17:18,080 --> 01:17:20,080 HAVING SUPPLIED SOME OF THE DATA 1734 01:17:20,080 --> 01:17:22,560 USED FOR THIS I DON'T KNOW IF A 1735 01:17:22,560 --> 01:17:25,640 LABOR OF LOVE IS QUITE THE RIGHT 1736 01:17:25,640 --> 01:17:26,080 DESCRIPTION. 1737 01:17:26,080 --> 01:17:27,920 IT'S A DAUNTING TASK AND IT 1738 01:17:27,920 --> 01:17:29,800 LOOKS LIKE Y'ALL HAVE DONE A 1739 01:17:29,800 --> 01:17:32,680 TERRIFIC JOB. 1740 01:17:32,680 --> 01:17:35,080 I ONLY HAVE ONE SUGGESTION AND 1741 01:17:35,080 --> 01:17:35,680 THERE'S NOTHING WORSE THAN 1742 01:17:35,680 --> 01:17:37,680 PUTTING A DATABASE OUT TO THE 1743 01:17:37,680 --> 01:17:39,480 PUBLIC AND RECEIVING EVERY 1744 01:17:39,480 --> 01:17:41,160 POSSIBLE ITERATION OF EVERYTHING 1745 01:17:41,160 --> 01:17:48,320 THAT COULD POSSIBLY BE DONE BUT 1746 01:17:48,320 --> 01:17:53,680 FOR THE MAJOR SLIDES YOU PUT 1747 01:17:53,680 --> 01:17:55,280 FORWARD AND SINCE SOME OF THIS 1748 01:17:55,280 --> 01:17:56,120 WILL BE PUBLIC FACING AND SOME 1749 01:17:56,120 --> 01:18:00,080 IS FOR THE FUNDING ON NIH, THAT 1750 01:18:00,080 --> 01:18:05,080 NIH PROVIDED OVER A PERIOD OF 1751 01:18:05,080 --> 01:18:07,080 YEARS I'M WONDERING IF YOU CAN 1752 01:18:07,080 --> 01:18:08,640 DO AN INFLATION ADJUSTMENT FOR 1753 01:18:08,640 --> 01:18:09,680 THAT GIVEN OUR INFLATION LEVEL 1754 01:18:09,680 --> 01:18:17,560 RIGHT NOW. 1755 01:18:17,560 --> 01:18:21,560 IT CAN BE EXTREMELY HELPFUL TO 1756 01:18:21,560 --> 01:18:22,440 PUT THINGS IN PERSPECTIVE. 1757 01:18:22,440 --> 01:18:25,880 IF IT'S NOT A TOTALLY ROBUST 1758 01:18:25,880 --> 01:18:29,120 INCREASE IN FUNDING, IT MAY LOOK 1759 01:18:29,120 --> 01:18:31,000 REALLY GOOD BUT IN REALITY MAY 1760 01:18:31,000 --> 01:18:35,680 NOT BE A WHOLE LOT AND RUNNING A 1761 01:18:35,680 --> 01:18:39,200 DISCRETIONARY GRANT PROGRAM 1762 01:18:39,200 --> 01:18:41,200 MYSELF I KNOW BASED ON INFLATION 1763 01:18:41,200 --> 01:18:43,240 WE'VE HAD REALLY SIGNIFICANT 1764 01:18:43,240 --> 01:18:49,040 LOSSES OVER THE LAST 10 YEARS 1765 01:18:49,040 --> 01:18:51,240 AND IT'S JUST A THOUGHT FOR YOUR 1766 01:18:51,240 --> 01:18:51,560 CONSIDERATION. 1767 01:18:51,560 --> 01:18:53,680 THANKS. 1768 01:18:53,680 --> 01:18:55,160 >> THANK YOU, THAT'S A GOOD 1769 01:18:55,160 --> 01:18:57,520 POINT NOW THAT WE HAVE OVER A 1770 01:18:57,520 --> 01:18:59,520 DECADE'S WORTH OF DATA. 1771 01:18:59,520 --> 01:19:01,600 WE NEED TO START CONSIDERING HOW 1772 01:19:01,600 --> 01:19:04,800 THAT CHANGES OVER TIME AS WELL. 1773 01:19:04,800 --> 01:19:06,240 IT'S LIKELY A CALCULATION WE CAN 1774 01:19:06,240 --> 01:19:08,400 WORK IN AND THEN PRESENT THE 1775 01:19:08,400 --> 01:19:14,720 DATA IN TWO DIFFERENT WAYS. 1776 01:19:14,720 --> 01:19:16,480 >> SOMETHING TO CONSIDER FOR A 1777 01:19:16,480 --> 01:19:17,560 FUTURE REPORT. 1778 01:19:17,560 --> 01:19:18,600 WELL, IT LOOKS LIKE WE DON'T 1779 01:19:18,600 --> 01:19:21,200 HAVE ANY OTHER QUESTIONS. 1780 01:19:21,200 --> 01:19:28,360 THANK YOU SO MUCH, DR. FERRARA 1781 01:19:28,360 --> 01:19:30,280 FOR SHARING THE INFORMATION AND 1782 01:19:30,280 --> 01:19:31,200 HOPEFULLY YOU'LL FEEL MORE 1783 01:19:31,200 --> 01:19:32,200 CONFIDENT ABOUT LOGGING INTO THE 1784 01:19:32,200 --> 01:19:33,720 ARD AND CHECKING WHAT WE HAVE 1785 01:19:33,720 --> 01:19:35,480 AND WE'LL LET YOU KNOW WHEN WE 1786 01:19:35,480 --> 01:19:39,800 UPDATE IT WITH THE LATEST THE 1787 01:19:39,800 --> 01:19:42,920 2020 DATA, WHICH JUST TO LET YOU 1788 01:19:42,920 --> 01:19:44,360 KNOW, THE REASON IT TAKES US A 1789 01:19:44,360 --> 01:19:47,040 WHILE TO GET ALL THE DATA IN IS 1790 01:19:47,040 --> 01:19:48,480 THAT EVERY FISCAL YEAR, IT TAKES 1791 01:19:48,480 --> 01:19:50,200 A WHILE FOR AGENCIES TO CLOSE 1792 01:19:50,200 --> 01:19:52,320 OUT THEIR DATA SET AND THEN WE 1793 01:19:52,320 --> 01:19:54,440 START WORKING WITH THE AGENCIES 1794 01:19:54,440 --> 01:19:57,320 TO GET ALL OF THAT ALIGNED AND 1795 01:19:57,320 --> 01:19:59,400 VERIFIED AND IT TAKES A WHILE TO 1796 01:19:59,400 --> 01:20:01,680 DO THAT STEP SO BY THE TIME THAT 1797 01:20:01,680 --> 01:20:03,320 ALL HAPPENS IT TAKES SOME TIME 1798 01:20:03,320 --> 01:20:04,680 BEFORE WE'RE ABLE TO HAVE THE 1799 01:20:04,680 --> 01:20:06,840 ANALYSIS DONE AND PUBLISH IT BUT 1800 01:20:06,840 --> 01:20:08,080 WE DO GET IT OUT AS SOON AS WE 1801 01:20:08,080 --> 01:20:10,160 CAN AND LOOK FORWARD TO GETTING 1802 01:20:10,160 --> 01:20:13,600 YOU A NEW DATA SET THIS YEAR. 1803 01:20:13,600 --> 01:20:14,560 THANK YOU. 1804 01:20:14,560 --> 01:20:19,080 NOW WE WILL MOVE INTO THE NEXT 1805 01:20:19,080 --> 01:20:23,680 SET OF ITEMS. 1806 01:20:23,680 --> 01:20:25,400 SO WE'RE GOING TO TALK ABOUT THE 1807 01:20:25,400 --> 01:20:26,720 STRATEGIC PLAN UPDATE AND THE 1808 01:20:26,720 --> 01:20:29,240 FIRST ITEM ON THE AGENDA HERE IS 1809 01:20:29,240 --> 01:20:31,520 TALKING ABOUT THE RECENT RFI. 1810 01:20:31,520 --> 01:20:36,000 WE REALLY APPRECIATE THE INPUT 1811 01:20:36,000 --> 01:20:37,160 THAT WE RECEIVED FROM THIS 1812 01:20:37,160 --> 01:20:38,400 PUBLIC FOR THE RFI. 1813 01:20:38,400 --> 01:20:41,520 IT'S VALUABLE TO HELP US KNOW 1814 01:20:41,520 --> 01:20:44,520 WHAT THE LATEST NEEDS AND 1815 01:20:44,520 --> 01:20:46,000 EMERGING CONCERNS ARE AND 1816 01:20:46,000 --> 01:20:47,880 PRIORITIES PEOPLE FEEL WOULD BE 1817 01:20:47,880 --> 01:20:48,760 REALLY HELPFUL INCLUDE IN THE 1818 01:20:48,760 --> 01:20:54,400 STRATEGIC PLAN SO WE GOT A 1819 01:20:54,400 --> 01:20:56,440 ROBUST RESPONSE WE HAVE 403 1820 01:20:56,440 --> 01:20:57,080 INDIVIDUALS AND ORGANIZATIONS 1821 01:20:57,080 --> 01:20:58,560 RESPOND TO THE RFI. 1822 01:20:58,560 --> 01:21:01,480 WE PUT OUT THE FIRST EVER 1823 01:21:01,480 --> 01:21:03,280 SPANISH VERSION AND RECEIVED TWO 1824 01:21:03,280 --> 01:21:04,520 RESPONSES ON THAT AND HOPE IN 1825 01:21:04,520 --> 01:21:08,480 THE FUTURE WE CAN DO MORE TO GET 1826 01:21:08,480 --> 01:21:10,000 THE WORD OUT WE ARE WELCOMING 1827 01:21:10,000 --> 01:21:12,240 RESPONSES THAT MAY COME FROM THE 1828 01:21:12,240 --> 01:21:14,480 SPANISH SPEAKING COMMUNITY. 1829 01:21:14,480 --> 01:21:16,320 AND WE WELCOME ALL COMMUNITIES 1830 01:21:16,320 --> 01:21:17,680 BUT THAT WAS OUR FIRST VENTURE 1831 01:21:17,680 --> 01:21:21,240 INTO EXPANDING IN THAT 1832 01:21:21,240 --> 01:21:24,560 DIRECTION. 1833 01:21:24,560 --> 01:21:27,000 WE ALSO WANT TO SHARE OUR TEAM 1834 01:21:27,000 --> 01:21:28,320 WENT THROUGH AND READ ALL THE 1835 01:21:28,320 --> 01:21:30,720 RESPONSES, REVIEWED THEM AND 1836 01:21:30,720 --> 01:21:33,040 THEN IDENTIFY MAJOR THEMES AND 1837 01:21:33,040 --> 01:21:33,880 TOPICS WITHIN EACH QUESTION AREA 1838 01:21:33,880 --> 01:21:35,400 WITH THE GOAL OF IDENTIFYING 1839 01:21:35,400 --> 01:21:38,000 THINGS WE MAY WANT TO INCLUDE IN 1840 01:21:38,000 --> 01:21:40,200 THE NEW STRATEGIC PLAN AND 1841 01:21:40,200 --> 01:21:42,280 HAVING A SPECIAL LOOK OUT FOR 1842 01:21:42,280 --> 01:21:43,520 ANYTHING THAT MIGHT BE NEW THAT 1843 01:21:43,520 --> 01:21:44,400 HAS NOT BEEN INCLUDED IN THE 1844 01:21:44,400 --> 01:21:48,680 STRATEGIC PLAN BEFORE. 1845 01:21:48,680 --> 01:21:50,080 EACH OF THE RESPONSES WAS 1846 01:21:50,080 --> 01:21:51,800 ASSIGNED TO ONE OR MORE THEMES 1847 01:21:51,800 --> 01:21:54,480 AND IF YOU WANT TO JUST READ THE 1848 01:21:54,480 --> 01:21:56,480 LIST OF THE THEMES DETAILED, 1849 01:21:56,480 --> 01:21:57,080 THERE'S A DOCUMENT IN THE 1850 01:21:57,080 --> 01:21:59,040 MATERIALS ON THE WEBSITE FOR 1851 01:21:59,040 --> 01:22:01,040 THIS MEETING AND WE PROVIDED AN 1852 01:22:01,040 --> 01:22:02,280 URL FOR THAT IN THIS SLIDE. 1853 01:22:02,280 --> 01:22:04,160 WE ALSO HAVE THE FULL TEXT 1854 01:22:04,160 --> 01:22:05,880 RESPONSES TO THE RFI AVAILABLE 1855 01:22:05,880 --> 01:22:08,840 ON THE WEBSITE FOR ANYBODY WHO 1856 01:22:08,840 --> 01:22:10,320 WANTS TO GO THERE AND READ THE 1857 01:22:10,320 --> 01:22:15,080 RESPONSES IN DETAIL. 1858 01:22:15,080 --> 01:22:19,880 OUR TEAM WAS ABLE TO IDENTIFY 1859 01:22:19,880 --> 01:22:21,280 CROSS-CUTTING THEMES. 1860 01:22:21,280 --> 01:22:23,320 THEMES THAT KEPT POPPING UP FOR 1861 01:22:23,320 --> 01:22:24,480 THE STRATEGIC PLAN AND WE 1862 01:22:24,480 --> 01:22:26,840 SUMMARIZED THEM HERE IN THIS 1863 01:22:26,840 --> 01:22:27,240 SLIDE. 1864 01:22:27,240 --> 01:22:30,160 THE THEMES THAT WE IDENTIFIED 1865 01:22:30,160 --> 01:22:32,280 WERE ACCESSIBILITY TO TREATMENTS 1866 01:22:32,280 --> 01:22:34,720 AND INTERVENTIONS. 1867 01:22:34,720 --> 01:22:36,320 THERE WAS A CONCERN ABOUT MAKING 1868 01:22:36,320 --> 01:22:38,760 SURE THAT ALL THESE THINGS ARE 1869 01:22:38,760 --> 01:22:40,440 ACCESSIBLE TO THE WHOLE 1870 01:22:40,440 --> 01:22:40,680 COMMUNITY. 1871 01:22:40,680 --> 01:22:45,000 A THEME OF DISPARITIES AND 1872 01:22:45,000 --> 01:22:47,520 DETECTION, DIAGNOSIS AND ACCESS 1873 01:22:47,520 --> 01:22:49,640 AND UTILIZATION TO ADDRESS THE 1874 01:22:49,640 --> 01:22:51,200 DISPARITIES AND CLOSE GAPS. 1875 01:22:51,200 --> 01:22:57,680 A THEME FOR ACCEPTANCE OF 1876 01:22:57,680 --> 01:22:59,240 AUTISTIC PEOPLE AND MORE 1877 01:22:59,240 --> 01:23:01,920 INFORMATION OF AUTISTIC PEOPLE 1878 01:23:01,920 --> 01:23:07,840 AND THEIR PRIORITIES AND 1879 01:23:07,840 --> 01:23:08,120 INTERESTS. 1880 01:23:08,120 --> 01:23:09,280 INCLUSION OF AUTISTIC VOICES IN 1881 01:23:09,280 --> 01:23:12,000 RESEARCH AND SERVICES. 1882 01:23:12,000 --> 01:23:16,840 LIFE SPANISH USE THAT AFFECT 1883 01:23:16,840 --> 01:23:18,400 ADULTS ON THE AUTISM SPECTRUM 1884 01:23:18,400 --> 01:23:20,640 INCLUDING THE AGING PROCESS. 1885 01:23:20,640 --> 01:23:23,240 IN THE PAST STRATEGIC PLANS WE 1886 01:23:23,240 --> 01:23:25,120 HAVE TALKED ABOUT THE TRANSITION 1887 01:23:25,120 --> 01:23:28,040 PERIOD IN EARLY ADULTHOOD WITH 1888 01:23:28,040 --> 01:23:29,320 REGARD TO THINGS LIKE INITIAL 1889 01:23:29,320 --> 01:23:32,160 EMPLOYMENT AND SO FORTH AND IN 1890 01:23:32,160 --> 01:23:33,400 THIS SET OF COMMENTS WE NOTED 1891 01:23:33,400 --> 01:23:37,640 THAT PEOPLE WERE TALKING ABOUT 1892 01:23:37,640 --> 01:23:40,720 WANTING MORE EMPHASIS ON LATER 1893 01:23:40,720 --> 01:23:44,000 ADULTHOOD AND WHAT HAPPENS NEXT. 1894 01:23:44,000 --> 01:23:46,360 PERSONALIZED APPROACHES THAT 1895 01:23:46,360 --> 01:23:49,720 INCLUDE ALL AUTISTICS INCLUDING 1896 01:23:49,720 --> 01:23:51,320 THOSE WITH SUPPORT NEEDS AND 1897 01:23:51,320 --> 01:23:53,680 THESE WERE THE CROSS-CUTTING 1898 01:23:53,680 --> 01:24:00,400 THEMES WE IDENTIFIED AND WE'VE 1899 01:24:00,400 --> 01:24:01,640 NOTED THEM WEAVING INTO THE NEXT 1900 01:24:01,640 --> 01:24:11,960 STRATEGIC PLAN. 1901 01:24:11,960 --> 01:24:17,160 AND AND SCREENING AND DETECTION 1902 01:24:17,160 --> 01:24:19,160 WERE REDUCING DISPARITIES IN 1903 01:24:19,160 --> 01:24:23,080 EARLY DETECTION FOR GIRLS AND 1904 01:24:23,080 --> 01:24:25,960 WOMEN AND ETHNIC OR RACIAL 1905 01:24:25,960 --> 01:24:26,920 MINORITIES OR OTHER UNDER SERVED 1906 01:24:26,920 --> 01:24:29,480 COMMUNITIES AND ADULTS. 1907 01:24:29,480 --> 01:24:37,680 THE NEED FOR MORE PRACTITIONER 1908 01:24:37,680 --> 01:24:39,200 TRAINING AND ACCESS TO DIAGNOSIS 1909 01:24:39,200 --> 01:24:40,920 AND SCREENING SERVICES AND 1910 01:24:40,920 --> 01:24:42,320 LISTED THE THEMES. 1911 01:24:42,320 --> 01:24:43,920 I CHOSE A FEW HIGHLIGHT HERE 1912 01:24:43,920 --> 01:24:45,960 THAT WERE MAJOR ONES THAT CAME 1913 01:24:45,960 --> 01:25:02,360 OUT IN QUESTION ONE. 1914 01:25:02,360 --> 01:25:05,080 EDUCATION AND STIGMA WAS A TOPIC 1915 01:25:05,080 --> 01:25:08,040 THAT WAS NEW AND HAS NOT 1916 01:25:08,040 --> 01:25:08,680 APPEARED IN PREVIOUS STRATEGIC 1917 01:25:08,680 --> 01:25:10,480 PLANS SO WE NOTED THAT. 1918 01:25:10,480 --> 01:25:11,560 DR. GORDON, DID YOU HAVE A 1919 01:25:11,560 --> 01:25:26,760 QUESTION? 1920 01:25:26,760 --> 01:25:27,800 BIOLOGY OF AUTISM AND THERE WERE 1921 01:25:27,800 --> 01:25:29,360 THEMES INCLUDING THE NEED FOR 1922 01:25:29,360 --> 01:25:32,080 MORE RESEARCH ON SEVERAL AREAS 1923 01:25:32,080 --> 01:25:32,960 INCLUDING CO-OCCURRING 1924 01:25:32,960 --> 01:25:42,360 CONDITIONS, FPHYSICAL, MENTAL 1925 01:25:42,360 --> 01:25:45,280 HEALTH AND INCLUSION OF AUTISTIC 1926 01:25:45,280 --> 01:25:46,600 INDIVIDUALS IN THE RESEARCH 1927 01:25:46,600 --> 01:25:48,280 PROCESS AND PLANNING WERE TWO 1928 01:25:48,280 --> 01:25:49,480 MAJOR THEMES THAT CAME OUT BUT 1929 01:25:49,480 --> 01:25:52,320 I'VE ALSO LISTED THE OTHER 1930 01:25:52,320 --> 01:25:53,280 THEMES WE IDENTIFIED. 1931 01:25:53,280 --> 01:25:54,760 IF YOU LOOK AT THE FULL TEXTUAL 1932 01:25:54,760 --> 01:25:57,160 SEE WHAT KINDS OF RESPONSES WE 1933 01:25:57,160 --> 01:26:01,080 GOT ON THESE VARIOUS AREAS AND 1934 01:26:01,080 --> 01:26:04,360 THE INCLUSION TOPIC WAS A NEW 1935 01:26:04,360 --> 01:26:06,200 ONE IN TERMS OF INCLUDING 1936 01:26:06,200 --> 01:26:06,760 AUTISTIC INDIVIDUALS IN THE 1937 01:26:06,760 --> 01:26:09,280 PLANNING OF RESEARCH. 1938 01:26:09,280 --> 01:26:14,600 AND CONDUCT OF RESEARCH. 1939 01:26:14,600 --> 01:26:22,840 SO RISK FACTORS AND LOOK AT 1940 01:26:22,840 --> 01:26:25,640 CONTRIBUTORS TO AUTISM. 1941 01:26:25,640 --> 01:26:27,240 IN THIS THE MAJOR THEMES 1942 01:26:27,240 --> 01:26:29,120 REFLECTED IN THE RFI ARE SOME 1943 01:26:29,120 --> 01:26:29,680 MEMBERS IN THE COMMUNITY 1944 01:26:29,680 --> 01:26:30,920 EXPRESSED THEY VALUE THE 1945 01:26:30,920 --> 01:26:33,280 RESEARCH ON GENETIC AND 1946 01:26:33,280 --> 01:26:34,800 ENVIRONMENTAL CAUSES OF AUTISM 1947 01:26:34,800 --> 01:26:35,480 WHILE OTHERS FELT THEY DIDN'T 1948 01:26:35,480 --> 01:26:38,600 FEEL THIS WAS A REALLY IMPORTANT 1949 01:26:38,600 --> 01:26:40,200 PRIORITY FOR FOCUS AND SOME OF 1950 01:26:40,200 --> 01:26:44,240 THE COMMENTS ADVOCATED FOR 1951 01:26:44,240 --> 01:26:57,240 RESEARCH ON HOW SOCIAL FACTORS 1952 01:26:57,240 --> 01:26:59,920 AND SOCIAL DETERMINATES OF 1953 01:26:59,920 --> 01:27:01,360 HEALTH AND THERE WERE THEMES 1954 01:27:01,360 --> 01:27:03,800 THAT WERE HIGHLIGHTED HERE 1955 01:27:03,800 --> 01:27:07,720 INCLUDING PROVIDING PERSONALIZED 1956 01:27:07,720 --> 01:27:08,880 AND TARGETED INTERVENTIONS FOR 1957 01:27:08,880 --> 01:27:12,120 THOSE WITH A VARIETY OF NEEDS 1958 01:27:12,120 --> 01:27:14,000 INCLUDING SUPPORTS FOR PEOPLE 1959 01:27:14,000 --> 01:27:17,000 WITH HIGH SUPPORT NEEDS SUCH AS 1960 01:27:17,000 --> 01:27:20,000 COMMUNICATION REPORTS AND 1961 01:27:20,000 --> 01:27:21,840 REDUCING NEGATIVE AFFECTS THAT 1962 01:27:21,840 --> 01:27:23,400 MAY BE ASSOCIATED WITH SOME 1963 01:27:23,400 --> 01:27:25,560 INTERVENTIONS AND IMPROVING 1964 01:27:25,560 --> 01:27:33,640 ACCESS TO INTERVENTION. 1965 01:27:33,640 --> 01:27:35,560 AND ALSO REDUCING ANY NEGATIVE 1966 01:27:35,560 --> 01:27:37,600 AFFECT MAY BE EXPERIENCED WITH 1967 01:27:37,600 --> 01:27:48,560 CERTAIN INTERVENTIONS. 1968 01:27:48,560 --> 01:27:50,720 FOR QUESTION 5 WHICH IS ABOUT 1969 01:27:50,720 --> 01:27:52,840 SERVICES, THE MAJOR THEMES 1970 01:27:52,840 --> 01:27:55,840 HIGHLIGHTED INCLUDED INCREASING 1971 01:27:55,840 --> 01:27:56,680 COMMUNITY ACCEPTANCE AND THEY 1972 01:27:56,680 --> 01:27:58,840 TALKED ABOUT INCREASING 1973 01:27:58,840 --> 01:28:00,680 ACCEPTANCE AMONG CARE PROVIDERS 1974 01:28:00,680 --> 01:28:02,680 AND OTHER PEOPLE IN THE 1975 01:28:02,680 --> 01:28:04,600 COMMUNITY WHO ARE SERVING THE 1976 01:28:04,600 --> 01:28:06,480 AUTISM COMMUNITY OR AUTISTIC 1977 01:28:06,480 --> 01:28:08,080 INDIVIDUALS AND THEIR FAMILIES. 1978 01:28:08,080 --> 01:28:09,320 THE DEVELOPMENT OF SERVICES THAT 1979 01:28:09,320 --> 01:28:11,480 MEET THE NEEDS OF UNDER SERVED 1980 01:28:11,480 --> 01:28:13,040 GROUPS SUCH AS GIRLS AND WOMEN 1981 01:28:13,040 --> 01:28:14,840 AND MINORITIES. 1982 01:28:14,840 --> 01:28:18,680 ACCESS TO SERVICES AND SERVICE 1983 01:28:18,680 --> 01:28:19,880 PROMOTE COMMUNITY INTEGRATION AS 1984 01:28:19,880 --> 01:28:32,360 WELL AS SERVICES FOR ADULTS. 1985 01:28:32,360 --> 01:28:34,600 QUESTION 6 ON LIFE SPANISH USE. 1986 01:28:34,600 --> 01:28:38,720 THE MAJOR THEMES INCLUDED 1987 01:28:38,720 --> 01:28:41,320 EMPLOYMENT FOR AUTISTIC PEOPLE 1988 01:28:41,320 --> 01:28:42,840 AND EMPLOYMENT FOR AUTISTIC 1989 01:28:42,840 --> 01:28:45,720 PEOPLE AND MAKE SURE SERVICES 1990 01:28:45,720 --> 01:28:50,040 CONTINUE ACROSS THE LIFE SPAN 1991 01:28:50,040 --> 01:28:51,720 AND SERVICE FOR PEOPLE WITH HIGH 1992 01:28:51,720 --> 01:28:53,560 SUPPORT NEEDS AND ADULT SERVICES 1993 01:28:53,560 --> 01:29:02,080 FOR COMMUNITY INTEGRATION. 1994 01:29:02,080 --> 01:29:04,960 THE NEW AREA WAS INCLUSION OF 1995 01:29:04,960 --> 01:29:06,680 OLDER ADULTS IN THINKING ABOUT 1996 01:29:06,680 --> 01:29:07,680 LIFE SPAN. 1997 01:29:07,680 --> 01:29:09,640 AND QUESTION 7 ON INFRASTRUCTURE 1998 01:29:09,640 --> 01:29:15,720 AND SURVEILLANCE, THE MAJOR 1999 01:29:15,720 --> 01:29:17,640 THEMES WERE ABOUT INCLUDING 2000 01:29:17,640 --> 01:29:19,680 AUTISTIC VOICES AND SERVICES AND 2001 01:29:19,680 --> 01:29:21,240 DEVELOPING A STRONG WORKFORCE TO 2002 01:29:21,240 --> 01:29:22,160 SUPPORT RESEARCH AND SERVICES 2003 01:29:22,160 --> 01:29:24,680 AND PROMOTING COLLABORATION 2004 01:29:24,680 --> 01:29:25,080 ACROSS AGENCIES AND 2005 01:29:25,080 --> 01:29:27,680 ORGANIZATIONS. 2006 01:29:27,680 --> 01:29:30,120 SO AGAIN IN QUESTION 7, 2007 01:29:30,120 --> 01:29:33,280 ACCEPTANCE OF INCLUSION WERE TWO 2008 01:29:33,280 --> 01:29:37,520 NEW THEMES FOR THIS PARTICULAR 2009 01:29:37,520 --> 01:29:37,800 QUESTION. 2010 01:29:37,800 --> 01:29:39,800 IN THE RFI WE ALSO INCLUDED 2011 01:29:39,800 --> 01:29:40,840 SPECIAL QUESTIONS ABOUT TWO 2012 01:29:40,840 --> 01:29:41,840 OTHER AREAS THAT WE KNOW THE 2013 01:29:41,840 --> 01:29:43,520 COMMITTEE WAS INTERESTED IN AND 2014 01:29:43,520 --> 01:29:45,760 THAT ARE TIMELY. 2015 01:29:45,760 --> 01:29:48,280 ONE WAS A QUESTION ABOUT 2016 01:29:48,280 --> 01:29:51,080 COVID-19 AND THE EFFECTS OF THE 2017 01:29:51,080 --> 01:29:52,040 PRESIDENT-ELECT ON THE AUTISM 2018 01:29:52,040 --> 01:29:52,680 COMMUNITY. 2019 01:29:52,680 --> 01:29:54,720 AND SO WHAT WE HEARD BACK FROM 2020 01:29:54,720 --> 01:29:57,280 THE COMMUNITY ABOUT THIS, I'VE 2021 01:29:57,280 --> 01:29:58,720 LISTED THE THEMES HERE THAT WERE 2022 01:29:58,720 --> 01:29:59,000 SHARED. 2023 01:29:59,000 --> 01:30:01,000 THE MAJOR THEMES RELATED TO 2024 01:30:01,000 --> 01:30:04,520 COVID-19 AND ITS IMPACT INCLUDED 2025 01:30:04,520 --> 01:30:05,600 SERVICES DISRUPTION OR CONCERNS 2026 01:30:05,600 --> 01:30:08,560 ABOUT SERVICE DISRUPTION DURING 2027 01:30:08,560 --> 01:30:09,600 THE PANDEMIC. 2028 01:30:09,600 --> 01:30:11,280 ENSURING BENEFITS THAT HAVE 2029 01:30:11,280 --> 01:30:12,680 EMERGED SUCH AS REMOTE OPTIONS 2030 01:30:12,680 --> 01:30:14,880 AND OTHER ACCOMMODATIONS WILL BE 2031 01:30:14,880 --> 01:30:16,760 ABLE TO BE CONTINUED AFTER THE 2032 01:30:16,760 --> 01:30:17,040 PANDEMIC. 2033 01:30:17,040 --> 01:30:18,760 AND ALSO THE MENTAL HEALTH 2034 01:30:18,760 --> 01:30:20,200 IMPACTS OF THE PANDEMIC 2035 01:30:20,200 --> 01:30:22,160 INCLUDING ISOLATION, LONELINESS, 2036 01:30:22,160 --> 01:30:24,840 DEPRESSION AND OTHER ISSUES THAT 2037 01:30:24,840 --> 01:30:25,400 HAVE EMERGED. 2038 01:30:25,400 --> 01:30:28,080 SO THOSE WERE THE MAJOR THEMES 2039 01:30:28,080 --> 01:30:29,560 THAT WE HEARD ABOUT IN THE 2040 01:30:29,560 --> 01:30:32,480 COVID-19 SECTION. 2041 01:30:32,480 --> 01:30:35,680 AND WE ALSO HAD A QUESTION ABOUT 2042 01:30:35,680 --> 01:30:37,680 DISPARITIES IN UNDER SERVED 2043 01:30:37,680 --> 01:30:38,000 COMMUNITIES. 2044 01:30:38,000 --> 01:30:39,680 AND WE LISTED SOME OF THE THEMES 2045 01:30:39,680 --> 01:30:41,680 HERE AND DISPARITIES IN UNDER 2046 01:30:41,680 --> 01:30:44,080 SERVED COMMUNITIES HAVE ALWAYS 2047 01:30:44,080 --> 01:30:45,280 BEEN A PART OF THE STRATEGIC 2048 01:30:45,280 --> 01:30:45,480 PLAN. 2049 01:30:45,480 --> 01:30:47,640 IT'S BEEN A GROWING PART OF THE 2050 01:30:47,640 --> 01:30:48,600 STRATEGIC PLAN BUT IN THIS 2051 01:30:48,600 --> 01:30:50,320 PARTICULAR RFI, THE MAJOR THEMES 2052 01:30:50,320 --> 01:30:53,200 THAT WE IDENTIFIED RELATED TO 2053 01:30:53,200 --> 01:30:54,760 DISPARITIES IN UNDER SERVED 2054 01:30:54,760 --> 01:30:56,480 COMMUNITIES INCLUDED ACCESS TO 2055 01:30:56,480 --> 01:30:58,720 SERVICES AND SUPPORTS FOR UNDER 2056 01:30:58,720 --> 01:31:04,120 SERVED COMMUNITIES, REDUCING 2057 01:31:04,120 --> 01:31:06,960 DISPARITIES AN SERVICE OUTCOMES 2058 01:31:06,960 --> 01:31:07,960 AND INCLUSION OF AUTISTIC PEOPLE 2059 01:31:07,960 --> 01:31:09,560 OF DIVERSE GENDERS AND RACIAL 2060 01:31:09,560 --> 01:31:11,360 AND ETHNIC MINORITY GROUPS AND 2061 01:31:11,360 --> 01:31:12,920 UNDER UNDER SERVED COMMUNITIES 2062 01:31:12,920 --> 01:31:13,600 IN RESEARCH, SERVICES AND 2063 01:31:13,600 --> 01:31:22,480 POLICY. 2064 01:31:22,480 --> 01:31:24,680 SO THOSE ARE THE MAIN THEMES I 2065 01:31:24,680 --> 01:31:24,840 HEARD. 2066 01:31:24,840 --> 01:31:26,040 I WANT TO THANK EVERYONE AGAIN 2067 01:31:26,040 --> 01:31:27,160 FOR CONTRIBUTING ALL THOSE WHO 2068 01:31:27,160 --> 01:31:29,600 TOOK THE TIME TO ACCESS THE FORM 2069 01:31:29,600 --> 01:31:31,680 AND SEND US YOUR FEEDBACK AND 2070 01:31:31,680 --> 01:31:32,280 YOUR THOUGHTS. 2071 01:31:32,280 --> 01:31:33,320 IT WILL BE REALLY VALUABLE FOR 2072 01:31:33,320 --> 01:31:35,760 THE COMMITTEE AND FOR OUR TEAM 2073 01:31:35,760 --> 01:31:39,320 AS WE HELP TO PREPARE THE 2074 01:31:39,320 --> 01:31:41,440 DERIVATIVE OF THE STRATEGIC 2075 01:31:41,440 --> 01:31:41,640 PLAN. 2076 01:31:41,640 --> 01:31:43,000 I HAVE A COUPLE OF QUESTIONS FOR 2077 01:31:43,000 --> 01:31:45,320 THE COMMITTEE BUT I WANTED TO 2078 01:31:45,320 --> 01:31:49,840 GIVE A FEW MOMENTS FOR ANY 2079 01:31:49,840 --> 01:31:51,960 THOUGHTS THE COMMITTEES WANT TO 2080 01:31:51,960 --> 01:31:52,920 SHARE ABOUT WHAT I DISCUSSED 2081 01:31:52,920 --> 01:32:07,800 ABOUT THE RFI HERE TODAY. 2082 01:32:07,800 --> 01:32:08,040 ALICIA. 2083 01:32:08,040 --> 01:32:09,160 >> HOW DID YOU DETERMINE WHAT 2084 01:32:09,160 --> 01:32:10,680 WAS A NEW THEME? 2085 01:32:10,680 --> 01:32:14,400 WAS IT TWO OR MORE PEOPLE 2086 01:32:14,400 --> 01:32:16,680 IDENTIFIED AS A NEED OR 10 ON 2087 01:32:16,680 --> 01:32:17,480 MORE PEOPLE. 2088 01:32:17,480 --> 01:32:21,280 HOW IS THAT DEFINED AS A NEW 2089 01:32:21,280 --> 01:32:25,040 THEME OR HOW DID YOU DEFINE 2090 01:32:25,040 --> 01:32:26,280 GROUPING THE THEMES TOGETHER? 2091 01:32:26,280 --> 01:32:27,720 >> SO IT WASN'T BASED ON NUMBERS 2092 01:32:27,720 --> 01:32:29,600 BUT SOME OF THEM WERE NEW IN 2093 01:32:29,600 --> 01:32:31,600 THAT WE CAN LOOK BACK AT OLD 2094 01:32:31,600 --> 01:32:33,240 VERSIONS OF THE STRATEGIC PLAN 2095 01:32:33,240 --> 01:32:35,080 AND IF THESE ISSUES WEREN'T 2096 01:32:35,080 --> 01:32:37,120 MENTIONED, FOR EXAMPLE, THE WORD 2097 01:32:37,120 --> 01:32:38,880 STIGMA, I DON'T THINK APPEARS IN 2098 01:32:38,880 --> 01:32:40,080 ANY PREVIOUS STRATEGIC PLAN BUT 2099 01:32:40,080 --> 01:32:41,640 THAT WAS A WORD THAT CAME UP IN 2100 01:32:41,640 --> 01:32:42,520 SOME OF THE RESPONSES AND SO WE 2101 01:32:42,520 --> 01:32:48,680 NOTED THAT. 2102 01:32:48,680 --> 01:32:50,840 THIS TYPE OF ANALYSIS IS A 2103 01:32:50,840 --> 01:32:51,800 QUALITATIVE ANALYSIS. 2104 01:32:51,800 --> 01:32:52,680 YOU HAVE A TEAM OF DIVERSE 2105 01:32:52,680 --> 01:32:54,080 PEOPLE LOOKING AT IT. 2106 01:32:54,080 --> 01:32:57,680 WE ALL LOOKED AT FROM OUR OWN 2107 01:32:57,680 --> 01:32:59,280 LENS AND TRIED TO IDENTIFY WHAT 2108 01:32:59,280 --> 01:33:01,640 ARE SOME OF THE EEMERGING 2109 01:33:01,640 --> 01:33:01,880 THEMES. 2110 01:33:01,880 --> 01:33:04,880 BUT I THINK ANY INDIVIDUAL WHO 2111 01:33:04,880 --> 01:33:05,840 LOOKS AT THE SAME INFORMATION 2112 01:33:05,840 --> 01:33:07,440 MAY COME UP WITH DIFFERENT 2113 01:33:07,440 --> 01:33:08,160 CONCLUSIONS. 2114 01:33:08,160 --> 01:33:09,800 THIS WAS OUR ATTEMPT TO BOIL 2115 01:33:09,800 --> 01:33:11,840 DOWN SOME OF THE MAIN POINTS 2116 01:33:11,840 --> 01:33:17,960 FROM A LARGE SET OF INFORMATION. 2117 01:33:17,960 --> 01:33:19,080 DINAH. 2118 01:33:19,080 --> 01:33:23,480 >> I APOLOGIZE FOR THE LATE 2119 01:33:23,480 --> 01:33:23,720 ARRIVAL. 2120 01:33:23,720 --> 01:33:25,880 I MISSED THE MESSAGE WE WERE 2121 01:33:25,880 --> 01:33:27,600 START AT A DIFFERENT TIME BUT I 2122 01:33:27,600 --> 01:33:31,720 THINK I'M UP TO SPEED NOW. 2123 01:33:31,720 --> 01:33:35,280 WHAT IS A CONCERN KNOW IS THE 2124 01:33:35,280 --> 01:33:36,840 LANGUAGE IN THE PRIOR DOCUMENT 2125 01:33:36,840 --> 01:33:42,400 AND WONDERING WHETHER WE WERE 2126 01:33:42,400 --> 01:33:46,280 GOING TO HAVE AN ADVISORY TEAM 2127 01:33:46,280 --> 01:33:47,760 OR SOME COLLABORATIVE GROUP 2128 01:33:47,760 --> 01:33:49,840 CONTRIBUTE INSIGHT INTO HOW 2129 01:33:49,840 --> 01:33:51,320 WE'RE USING LANGUAGE THROUGHOUT 2130 01:33:51,320 --> 01:33:53,520 THE STRATEGIC PLAN AND I WAS 2131 01:33:53,520 --> 01:33:56,520 ALSO WONDERING TOO WHEN WE TALK 2132 01:33:56,520 --> 01:33:58,360 ABOUT ACCESSIBILITY ISSUES AS IT 2133 01:33:58,360 --> 01:34:00,960 APPLIES TO SERVICES, WERE WE 2134 01:34:00,960 --> 01:34:02,760 ABLE TO DELINEATE THE DIFFERENCE 2135 01:34:02,760 --> 01:34:04,920 BETWEEN ACCESS TO SAY HEALTH 2136 01:34:04,920 --> 01:34:11,200 CARE SERVICES VERSUS ACCESS TO 2137 01:34:11,200 --> 01:34:13,000 SOCIAL SERVICE SYSTEMS VERSUS 2138 01:34:13,000 --> 01:34:13,280 DIAGNOSIS? 2139 01:34:13,280 --> 01:34:15,120 I'M SEEING ALL OF THOSE THINGS 2140 01:34:15,120 --> 01:34:20,680 IN MY PRACTICE SO I'M JUST 2141 01:34:20,680 --> 01:34:22,800 WONDERING THERE WAS DELINEATION 2142 01:34:22,800 --> 01:34:23,640 OR CLARITY THERE. 2143 01:34:23,640 --> 01:34:26,400 >> WITH THE LANGUAGE, OUR TEAM 2144 01:34:26,400 --> 01:34:28,280 HAS PAID SPECIAL ATTENTION TO 2145 01:34:28,280 --> 01:34:30,280 CHANGES IN THOUGHT ABOUT 2146 01:34:30,280 --> 01:34:31,480 LANGUAGE AND WE'RE GOING TO BE 2147 01:34:31,480 --> 01:34:33,920 TAKING THE FIRST STAB AT A DRAFT 2148 01:34:33,920 --> 01:34:35,280 AND SO YOU'LL SEE WHAT WE COME 2149 01:34:35,280 --> 01:34:36,800 UP WITH FOR LANGUAGE BUT THEN 2150 01:34:36,800 --> 01:34:38,080 THE COMMITTEE IS GOING TO HAVE A 2151 01:34:38,080 --> 01:34:40,280 CHANCE TO REFLECT ON THIS AND IF 2152 01:34:40,280 --> 01:34:42,080 YOU SEE ANYTHING THAT IS STILL A 2153 01:34:42,080 --> 01:34:43,640 CONCERN, WE CERTAINLY CAN TRY TO 2154 01:34:43,640 --> 01:34:45,480 ADDRESS IT BUT WE WILL BE TRYING 2155 01:34:45,480 --> 01:34:49,080 TO BE SENSITIVE ON LANGUAGE TO 2156 01:34:49,080 --> 01:34:52,160 BE AS INCLUSIVE AS POSSIBLE AND 2157 01:34:52,160 --> 01:34:53,600 ALSO CLEAR AND ACCURATE AS 2158 01:34:53,600 --> 01:34:54,600 POSSIBLE TO MAKE SURE PEOPLE 2159 01:34:54,600 --> 01:34:57,320 UNDERSTAND WHAT WE'RE TALKING 2160 01:34:57,320 --> 01:34:57,640 ABOUT. 2161 01:34:57,640 --> 01:35:02,360 SO WE HAVE TAKEN IN A LOT OF 2162 01:35:02,360 --> 01:35:03,040 FEEDBACK WE HEARD FROM VARIOUS 2163 01:35:03,040 --> 01:35:04,760 COMMUNITY MEMBERS AND AROUND THE 2164 01:35:04,760 --> 01:35:06,080 COMMUNITY AND FOR THE SAKE OF 2165 01:35:06,080 --> 01:35:09,120 TIME WE'RE GOING TO GIVE A FIRST 2166 01:35:09,120 --> 01:35:10,320 STAB TO THIS BUT WE'LL WELCOME 2167 01:35:10,320 --> 01:35:11,880 YOUR FEEDBACK ON IT. 2168 01:35:11,880 --> 01:35:14,840 IN TERMS OF ACCESSIBILITY, I SAW 2169 01:35:14,840 --> 01:35:15,480 THROUGHOUT THE COMMENTS THERE 2170 01:35:15,480 --> 01:35:17,640 WERE DIFFERENT USES OF THAT AND 2171 01:35:17,640 --> 01:35:19,040 MANY OTHER TERMS AND PEOPLE HAD 2172 01:35:19,040 --> 01:35:20,680 DIFFERENT NUANCES. 2173 01:35:20,680 --> 01:35:22,840 SO OUR TEAM WILL BE TRYING TO 2174 01:35:22,840 --> 01:35:24,560 WEAVE SOME OF THOSE DIFFERENT 2175 01:35:24,560 --> 01:35:26,360 THINGS IN IN DIFFERENT PARTS OF 2176 01:35:26,360 --> 01:35:27,440 THE STRATEGIC PLAN DRAFT BUT WE 2177 01:35:27,440 --> 01:35:29,600 WILL GIVE THE COMMITTEE A CHANCE 2178 01:35:29,600 --> 01:35:31,280 TO REFLECT ON IT TOO AND SHARE 2179 01:35:31,280 --> 01:35:33,120 IF YOU THINK THERE'S SOMETHING 2180 01:35:33,120 --> 01:35:34,480 IMPORTANT THAT WAS MISSED. 2181 01:35:34,480 --> 01:35:36,000 IT'S ALWAYS A CHALLENGE OF 2182 01:35:36,000 --> 01:35:38,680 TRYING TO PUT IN ALL THE DETAILS 2183 01:35:38,680 --> 01:35:40,080 AS MUCH AS YOU CAN BUT ALSO NOT 2184 01:35:40,080 --> 01:35:42,800 MAKING IT SO DETAILED YOU CAN'T 2185 01:35:42,800 --> 01:35:43,800 UNDERSTAND IT ANYMORE. 2186 01:35:43,800 --> 01:35:47,000 WE HAVE TO KEEP IT AT SOMEWHAT A 2187 01:35:47,000 --> 01:35:48,360 HIGH LEVEL SO IT'S 2188 01:35:48,360 --> 01:35:49,680 UNDERSTANDABLE BUT WE WILL TRY 2189 01:35:49,680 --> 01:35:53,680 TO REFLECT SOME OF THE DIFFERENT 2190 01:35:53,680 --> 01:35:55,680 DIVERSE OPINIONS FROM ACROSS THE 2191 01:35:55,680 --> 01:35:55,960 COMMUNITY. 2192 01:35:55,960 --> 01:36:00,520 >> MY PRIMARY CONCERN IS THAT SO 2193 01:36:00,520 --> 01:36:02,400 MANY INDIVIDUALS AND RECENT 2194 01:36:02,400 --> 01:36:04,400 QUALITATIVE RESEARCH HAVE 2195 01:36:04,400 --> 01:36:09,080 COMMUNICATED ESPECIALLY PCORI 2196 01:36:09,080 --> 01:36:11,040 FUNDED PROGRAMS HOW NAVIGATING 2197 01:36:11,040 --> 01:36:17,040 ACCESS THROUGH SYSTEMS IS SUCH A 2198 01:36:17,040 --> 01:36:18,600 HUGE DETERMINATE OF HEALTH. 2199 01:36:18,600 --> 01:36:20,040 I'M LOOKING FOR SOME ELEMENT OF 2200 01:36:20,040 --> 01:36:26,840 POLICY IN HERE AS IT APPLIES TO 2201 01:36:26,840 --> 01:36:28,800 SYSTEMS NAVIGATION. 2202 01:36:28,800 --> 01:36:29,600 SO THANK YOU FOR TAKING MY 2203 01:36:29,600 --> 01:36:31,680 QUESTION. 2204 01:36:31,680 --> 01:36:33,800 >> QUESTION 5 IS WHERE WE WOULD 2205 01:36:33,800 --> 01:36:36,120 TALK ABOUT SYSTEMS. 2206 01:36:36,120 --> 01:36:39,360 SO THE COMMENTS YOU PROVIDE AS 2207 01:36:39,360 --> 01:36:41,680 AN IACC MEMBER AS A STRATEGIC 2208 01:36:41,680 --> 01:36:43,120 PLAN IF YOU WANT TO NOTE WE'LL 2209 01:36:43,120 --> 01:36:45,280 TAKE NOTE OF THAT. 2210 01:36:45,280 --> 01:36:54,680 HELEN, DID YOU HAVE A QUESTION? 2211 01:36:54,680 --> 01:36:56,880 >> I CAN'T DO MY VIDEO SO YOU 2212 01:36:56,880 --> 01:36:58,360 HAVE TO IMAGINE ME. 2213 01:36:58,360 --> 01:36:58,920 >> THANK YOU. 2214 01:36:58,920 --> 01:37:01,800 >> I DO WANT TO SAY I THINK 2215 01:37:01,800 --> 01:37:05,600 THIS WAS AN ENORMOUSLY HELPFUL 2216 01:37:05,600 --> 01:37:09,040 PIECE OF WORK YOU AND YOUR TEAM 2217 01:37:09,040 --> 01:37:11,480 DID, SUSAN, IDENTIFYING THE 2218 01:37:11,480 --> 01:37:17,480 THEMES IS A TOUGH JOB AND I 2219 01:37:17,480 --> 01:37:22,800 THINK THE SUMMARY IS I WAS GOING 2220 01:37:22,800 --> 01:37:26,240 TO RESPOND TO YOUR QUESTION FOR 2221 01:37:26,240 --> 01:37:27,840 CONSIDERATION AND WHAT I WANT TO 2222 01:37:27,840 --> 01:37:32,920 RECOMMEND IS THE LAST TWO YEARS 2223 01:37:32,920 --> 01:37:34,560 HAS BEEN ENORMOUSLY DIFFICULT 2224 01:37:34,560 --> 01:37:36,360 PARTICULARLY FOR OUR COMMUNITY. 2225 01:37:36,360 --> 01:37:40,480 BUT I THINK SINCE TALKING ABOUT 2226 01:37:40,480 --> 01:37:42,280 A STRATEGIC PLAN NOT THINKING 2227 01:37:42,280 --> 01:37:45,040 ABOUT IT IN THE CONTEXT 2228 01:37:45,040 --> 01:37:46,080 EXCLUSIVELY LOOKING BACK TO 2229 01:37:46,080 --> 01:37:48,200 COVID-19 AND WHAT THE LAST TWO 2230 01:37:48,200 --> 01:37:53,600 YEARS WAS LIKE BUT STRATEGICALLY 2231 01:37:53,600 --> 01:37:56,080 THINKING ABOUT WHAT CAN WE PUT 2232 01:37:56,080 --> 01:37:58,960 INTO THE PLAN THAT WILL GET US 2233 01:37:58,960 --> 01:38:03,200 AHEAD OF WHAT IS LIKELY TO BE 2234 01:38:03,200 --> 01:38:04,080 THE NEXT PANDEMIC. 2235 01:38:04,080 --> 01:38:09,320 SO BE MORE FUTURE LOOKING RATHER 2236 01:38:09,320 --> 01:38:13,560 THAN REHASHING THE TERRIBLE 2237 01:38:13,560 --> 01:38:15,280 TIMES THAT WE'VE BEEN THROUGH AS 2238 01:38:15,280 --> 01:38:16,000 A GROUP. 2239 01:38:16,000 --> 01:38:18,080 SO THAT WAS WHAT I WOULD LIKE TO 2240 01:38:18,080 --> 01:38:21,280 RECOMMEND. 2241 01:38:21,280 --> 01:38:21,520 THANK YOU. 2242 01:38:21,520 --> 01:38:26,480 >> THANK YOU FOR SHARING THAT 2243 01:38:26,480 --> 01:38:27,400 PERSPECTIVE AND THERE'S BEEN 2244 01:38:27,400 --> 01:38:29,280 REPORTS IN PREPARING FOR FUTURE 2245 01:38:29,280 --> 01:38:30,480 EMERGENCIES AND SITUATIONS SO WE 2246 01:38:30,480 --> 01:38:31,800 CAN LOOK AT THAT BUT I 2247 01:38:31,800 --> 01:38:32,840 APPRECIATE THAT COMMENT ABOUT 2248 01:38:32,840 --> 01:38:34,600 TRYING TO KEEP IT FORWARD 2249 01:38:34,600 --> 01:38:34,840 LOOKING. 2250 01:38:34,840 --> 01:38:40,480 JALEN. 2251 01:38:40,480 --> 01:38:42,200 >> THANK YOU. 2252 01:38:42,200 --> 01:38:44,360 AM I ON? 2253 01:38:44,360 --> 01:38:47,320 I WANT TO THANK YOU SO VERY MUCH 2254 01:38:47,320 --> 01:38:49,040 FOR EMPHASIZING THINGS WITH 2255 01:38:49,040 --> 01:38:49,600 ADULTHOOD. 2256 01:38:49,600 --> 01:38:52,840 IT IS APE AREA THAT HAS BEEN 2257 01:38:52,840 --> 01:38:54,000 SORELY NEGLECTED IN SO VERY MANY 2258 01:38:54,000 --> 01:38:59,120 WAYS AND WE NEED TO ADDRESS IT. 2259 01:38:59,120 --> 01:39:01,520 I WOULD ALSO LIKE TO COMMENT ON 2260 01:39:01,520 --> 01:39:02,680 THE SOCIOLOGICAL ASPECT OF 2261 01:39:02,680 --> 01:39:03,040 THINGS. 2262 01:39:03,040 --> 01:39:06,680 WE DO NEED GOOD SCIENCE AND HOW 2263 01:39:06,680 --> 01:39:08,680 THAT GOES ALONG WITH THE HUMAN 2264 01:39:08,680 --> 01:39:10,960 BODY BUT ALSO HOW PEOPLE 2265 01:39:10,960 --> 01:39:13,200 PARTICIPATE IN COMMUNITY AND HOW 2266 01:39:13,200 --> 01:39:14,720 COMMUNITIES CAN PUT THINGS 2267 01:39:14,720 --> 01:39:16,800 TOGETHER WITHIN THEIR OWN 2268 01:39:16,800 --> 01:39:19,040 CONFINES THAT CAN HELP WITH 2269 01:39:19,040 --> 01:39:22,240 INCLUSION AND ALSO HELP PEOPLE 2270 01:39:22,240 --> 01:39:24,280 HAVE BETTER MENTAL HEALTH. 2271 01:39:24,280 --> 01:39:25,840 BUT IT ALSO HAS ONE COMPONENT 2272 01:39:25,840 --> 01:39:27,280 AND I AM SEEING THIS IS MISSING 2273 01:39:27,280 --> 01:39:29,440 AND I'D LIKE TO HAVE MORE OF A 2274 01:39:29,440 --> 01:39:30,920 CONVERSATION AT SOME POINT THAT 2275 01:39:30,920 --> 01:39:32,280 COULD BE OFFLINE ABOUT THE 2276 01:39:32,280 --> 01:39:37,840 IMPACT ON FAMILIES. 2277 01:39:37,840 --> 01:39:41,640 IF YOU CONSIDER TWO PARENTS AND 2278 01:39:41,640 --> 01:39:43,240 TWO SIBLINGS AS PEOPLE ARE 2279 01:39:43,240 --> 01:39:45,360 GROWING UP IT MAKES IT FIVE 2280 01:39:45,360 --> 01:39:47,040 TIMES THE NUMBER OF PEOPLE WE'RE 2281 01:39:47,040 --> 01:39:50,400 WORKING WITH IN OUR NUMBERS AND 2282 01:39:50,400 --> 01:39:52,360 SEEING A GREAT NUMBER OF PARENTS 2283 01:39:52,360 --> 01:39:53,920 AND SIBLINGS SUFFERING AS WELL 2284 01:39:53,920 --> 01:39:56,680 BECAUSE THEY'RE LIVES ARE 2285 01:39:56,680 --> 01:39:56,920 CHANGED. 2286 01:39:56,920 --> 01:39:59,200 IT DOESN'T MEAN THEY HAVE ANY 2287 01:39:59,200 --> 01:40:04,000 LESS LOVE OR CONCERN FOR THE 2288 01:40:04,000 --> 01:40:05,440 INDIVIDUAL ON THE SPECTRUM BUT 2289 01:40:05,440 --> 01:40:08,280 AN ENTIRE FAMILY IS IMPACTED 2290 01:40:08,280 --> 01:40:09,840 WHEN SOMEBODY IS ON THE AUTISM 2291 01:40:09,840 --> 01:40:10,960 SPECTRUM AND HOW TO ADDRESS 2292 01:40:10,960 --> 01:40:15,280 THOSE MENTAL HEALTH ISSUES. 2293 01:40:15,280 --> 01:40:20,040 ALSO THE AGING PROCESS FOR THE 2294 01:40:20,040 --> 01:40:22,280 PARENTS OF ADULTS THAT ARE ALSO 2295 01:40:22,280 --> 01:40:24,200 AGING AND THE IMPLICATIONS OF 2296 01:40:24,200 --> 01:40:26,040 WHAT THAT COULD BE EVEN ON 2297 01:40:26,040 --> 01:40:28,400 HOMELESSNESS. 2298 01:40:28,400 --> 01:40:35,280 BECAUSE IF PLANS ARE NOT MADE BY 2299 01:40:35,280 --> 01:40:36,200 FAMILY 2300 01:40:36,200 --> 01:40:37,400 FAMILIES THAN AN INDIVIDUAL MAY 2301 01:40:37,400 --> 01:40:38,840 BE BE SUBJECT TO LOSING FAMILY 2302 01:40:38,840 --> 01:40:39,840 HOME AND STRUCTURE AND THE 2303 01:40:39,840 --> 01:40:41,840 FINANCIAL SUPPORT TO BE ABLE TO 2304 01:40:41,840 --> 01:40:43,280 REMAIN IN THE HOME AND WE ARE 2305 01:40:43,280 --> 01:40:48,240 SEEING ALARMING STATISTICS IN 2306 01:40:48,240 --> 01:40:49,360 CONJUNCTION WITH HOMELESSNESS 2307 01:40:49,360 --> 01:40:51,280 ACROSS THE COUNTRY. 2308 01:40:51,280 --> 01:40:53,200 I HOPE WE CAN MAYBE PUT SOME OF 2309 01:40:53,200 --> 01:40:54,800 THOSE THINGS INTO PLAY AS WELL 2310 01:40:54,800 --> 01:40:56,360 BUT YOU'VE DONE A BEAUTIFUL JOB 2311 01:40:56,360 --> 01:40:57,600 OF PUTTING THINGS FORWARD FOR 2312 01:40:57,600 --> 01:41:00,840 US. 2313 01:41:00,840 --> 01:41:01,400 THANK YOU. 2314 01:41:01,400 --> 01:41:02,280 >> THANK YOU. 2315 01:41:02,280 --> 01:41:03,840 WE PLAN TO INCLUDE CARE GIVING 2316 01:41:03,840 --> 01:41:05,280 ISSUES AND THAT'S A WHOLE FAMILY 2317 01:41:05,280 --> 01:41:07,120 ISSUE AND THERE WAS A THEME OF 2318 01:41:07,120 --> 01:41:08,680 CAREGIVER SUPPORTS THAT ARE 2319 01:41:08,680 --> 01:41:08,920 NEEDED. 2320 01:41:08,920 --> 01:41:12,520 I THINK THAT THAT WILL BE 2321 01:41:12,520 --> 01:41:14,280 CAPTURED AND I AM AWARE OF THE 2322 01:41:14,280 --> 01:41:15,360 HOMELESSNESS SITUATION. 2323 01:41:15,360 --> 01:41:17,400 I HOPE WE CAN GET SOMEONE TO 2324 01:41:17,400 --> 01:41:18,640 COMMENT ON THIS IN THE FUTURE. 2325 01:41:18,640 --> 01:41:20,760 I'VE BEEN IN TOUCH WITH A 2326 01:41:20,760 --> 01:41:21,920 PARTNER IN NEW JERSEY WHO'S BEEN 2327 01:41:21,920 --> 01:41:24,920 TELLING ME ABOUT ISSUES WITH 2328 01:41:24,920 --> 01:41:27,760 YOUNG AUTISTIC PEOPLE ENDING UP 2329 01:41:27,760 --> 01:41:30,400 HOMELESS AND THERE'S OLDER 2330 01:41:30,400 --> 01:41:32,000 AUTISTIC PEOPLE ENDING UP 2331 01:41:32,000 --> 01:41:33,040 HOMELESS AND WOULD LOVE TO SHARE 2332 01:41:33,040 --> 01:41:34,680 ABOUT THAT AT A FUTURE MEETING. 2333 01:41:34,680 --> 01:41:37,600 IT'S ON OR RADAR AND THERE ARE 2334 01:41:37,600 --> 01:41:39,760 SOME DISCUSSIONS GOING ON AND 2335 01:41:39,760 --> 01:41:42,280 HOPE TO BE INCLUSIVE OF THOSE 2336 01:41:42,280 --> 01:41:42,720 ISSUES. 2337 01:41:42,720 --> 01:41:43,160 THANK YOU, MATTHEW. 2338 01:41:43,160 --> 01:41:57,280 DO YOU HAVE A QUESTION? 2339 01:41:57,280 --> 01:41:58,200 J 2340 01:42:00,040 --> 01:42:01,600 >> THANK YOU FOR THE WORK YOUR 2341 01:42:01,600 --> 01:42:02,840 TEAM HAS DONE. 2342 01:42:02,840 --> 01:42:04,000 RESPONDING TO THE TWO QUESTIONS 2343 01:42:04,000 --> 01:42:06,440 HERE, ARE THESE OUR ONLY OPTIONS 2344 01:42:06,440 --> 01:42:11,000 FOR CROSS-CUTTING OBJECTIVES? 2345 01:42:11,000 --> 01:42:13,680 IS THERE WAS ONE CROSS-CUTTING 2346 01:42:13,680 --> 01:42:14,800 OBJECTIVE IN THE PRIOR STRATEGIC 2347 01:42:14,800 --> 01:42:16,120 PLAN FOR FEMALES AND SEX AND 2348 01:42:16,120 --> 01:42:22,480 THESE ARE TWO POTENTIALS YOU PUT 2349 01:42:22,480 --> 01:42:23,760 FORWARD HOWEVER, MY COMMENTS I 2350 01:42:23,760 --> 01:42:26,520 PUT IN I'D LIKE US TO CONSIDER A 2351 01:42:26,520 --> 01:42:27,880 DIFFERENT CROSS-CUTTING 2352 01:42:27,880 --> 01:42:33,080 OBJECTIVE OR ADDITIONAL ONE TO 2353 01:42:33,080 --> 01:42:34,760 FOCUS ON COMMUNICATION. 2354 01:42:34,760 --> 01:42:37,920 BEING ONE OF THE TWO CORE 2355 01:42:37,920 --> 01:42:40,160 DOMAINS IN AUTISM IT'S OBVIOUS 2356 01:42:40,160 --> 01:42:41,320 COMMUNICATION DRIVES MANY 2357 01:42:41,320 --> 01:42:43,600 ASPECTS OF QUALITY OF LIFE, 2358 01:42:43,600 --> 01:42:45,280 DEVELOPMENT OF MENTAL HEALTH 2359 01:42:45,280 --> 01:42:45,840 CONDITIONS, CHALLENGING 2360 01:42:45,840 --> 01:42:48,000 BEHAVIORS AND THE ABILITY TO 2361 01:42:48,000 --> 01:42:50,120 ACCESS EDUCATION, MEDICAL CARE, 2362 01:42:50,120 --> 01:42:53,640 FAMILY AND COMMUNITY LIFE, THE 2363 01:42:53,640 --> 01:42:55,800 WORKPLACE AND INTERVENTIONS. 2364 01:42:55,800 --> 01:43:00,080 HOWEVER, I THINK IT'S FAIRLY 2365 01:43:00,080 --> 01:43:00,680 WELL RECOGNIZED THAT 2366 01:43:00,680 --> 01:43:02,800 COMMUNICATION HAS REALLY 2367 01:43:02,800 --> 01:43:06,200 RECEIVED AS A TOPIC VERY LITTLE 2368 01:43:06,200 --> 01:43:08,440 RESEARCH ATTENTION OR POLICY 2369 01:43:08,440 --> 01:43:11,480 FOCUS OR SERVICES IN TERMS OF 2370 01:43:11,480 --> 01:43:13,640 BOTH THE UNDERLYING BIOLOGIC 2371 01:43:13,640 --> 01:43:16,600 CHALLENGES IN GENETICS AND SO I 2372 01:43:16,600 --> 01:43:19,680 WANTED TO PROPOSE THAT AS A 2373 01:43:19,680 --> 01:43:21,280 POTENTIAL CROSS-CUTTING 2374 01:43:21,280 --> 01:43:24,080 OBJECTIVE THAT THIS STRATEGIC 2375 01:43:24,080 --> 01:43:25,760 PLAN COULD ADDRESS. 2376 01:43:25,760 --> 01:43:30,880 SO THANK YOU. 2377 01:43:30,880 --> 01:43:31,600 >> THANK YOU. 2378 01:43:31,600 --> 01:43:32,320 WE CERTAINLY HEARD A LOT OF 2379 01:43:32,320 --> 01:43:34,920 ABOUT COMMUNICATION AND THE 2380 01:43:34,920 --> 01:43:35,600 CROSS-CUTTING OBJECTIVE PURPOSE 2381 01:43:35,600 --> 01:43:38,080 IS ALLOWING OUR TEAM TO DO 2382 01:43:38,080 --> 01:43:40,080 SEPARATE TRACKING ON THE ISSUE 2383 01:43:40,080 --> 01:43:43,320 IN TERMS THE DOLLARS AND SO 2384 01:43:43,320 --> 01:43:43,600 FORTH. 2385 01:43:43,600 --> 01:43:45,720 WE ARE TRACKING AS SUB 2386 01:43:45,720 --> 01:43:47,600 CATEGORIES SOME OF THESE OTHER 2387 01:43:47,600 --> 01:43:48,280 TOPICS. 2388 01:43:48,280 --> 01:43:48,880 SO COMMUNICATION HAS ALREADY 2389 01:43:48,880 --> 01:43:51,320 TRACKED IN A DIFFERENT WAY. 2390 01:43:51,320 --> 01:43:52,160 WE'LL CERTAINLY GIVE SOME 2391 01:43:52,160 --> 01:43:54,680 THOUGHT TO HOW WE CAN HIGHLIGHT 2392 01:43:54,680 --> 01:43:55,000 COMMUNICATION. 2393 01:43:55,000 --> 01:43:58,960 IT DID COME ACROSS AS A STRONG 2394 01:43:58,960 --> 01:44:01,680 THEME AND WE ARE PLANNING TO 2395 01:44:01,680 --> 01:44:06,080 TALK ABOUT COMMUNICATION IN OUR 2396 01:44:06,080 --> 01:44:09,880 APRIL MEETING TO STAY TUNED. 2397 01:44:09,880 --> 01:44:11,640 >> MATT, THANK YOU SO MUCH FOR 2398 01:44:11,640 --> 01:44:12,080 BRINGING THE ISSUE OF 2399 01:44:12,080 --> 01:44:15,280 COMMUNICATION UP. 2400 01:44:15,280 --> 01:44:16,880 I THINK IT WILL BE IMPORTANT 2401 01:44:16,880 --> 01:44:19,120 FOR -- IT WOULD BE HELPFUL FOR 2402 01:44:19,120 --> 01:44:21,120 YOU, MATT AND OTHERS, TO TAKE A 2403 01:44:21,120 --> 01:44:26,440 LOOK AT WHERE COMMUNICATION IS 2404 01:44:26,440 --> 01:44:34,000 IN THE CURRENT PLAN OUT SHOULD 2405 01:44:34,000 --> 01:44:36,080 APPEAR IN MULTIPLE PLACES AND 2406 01:44:36,080 --> 01:44:38,520 WHETHER AS THE CROSS-CUTTING IS 2407 01:44:38,520 --> 01:44:39,120 SOMETHING WE'D APPRECIATE 2408 01:44:39,120 --> 01:44:43,760 FURTHER OPINIONS ON BUT I AGREE 2409 01:44:43,760 --> 01:44:45,240 WE ENSURE WE COVER IT IN 2410 01:44:45,240 --> 01:44:46,520 MULTIPLE PLACES IN THE STRATEGIC 2411 01:44:46,520 --> 01:44:46,720 PLAN. 2412 01:44:46,720 --> 01:44:51,080 I WANT TO TAKE ONE OBJECTION TO 2413 01:44:51,080 --> 01:44:53,880 THE NOTION THAT COMMUNICATION IS 2414 01:44:53,880 --> 01:44:54,640 INSUFFICIENTLY REPRESENTED IN 2415 01:44:54,640 --> 01:44:59,680 THE RESEARCH SPACE. 2416 01:44:59,680 --> 01:45:01,240 MY COLLEAGUES FROM NATIONAL 2417 01:45:01,240 --> 01:45:02,840 INSTITUTE OF DEAFNESS AND 2418 01:45:02,840 --> 01:45:04,400 COMMUNICATION DISORDERS FUND A 2419 01:45:04,400 --> 01:45:05,560 GREAT DEAL OF RESEARCH IN 2420 01:45:05,560 --> 01:45:08,480 COMMUNICATION AND AUTISM AS DO 2421 01:45:08,480 --> 01:45:10,480 WE AT NICHD AND OTHERS AT NIH 2422 01:45:10,480 --> 01:45:13,760 AND I KNOW IT'S A FOCUS OF OTHER 2423 01:45:13,760 --> 01:45:15,280 INITIATIVES AS WELL. 2424 01:45:15,280 --> 01:45:19,000 AND I CAN'T ARGUE IT'S 2425 01:45:19,000 --> 01:45:19,280 SUFFICIENT. 2426 01:45:19,280 --> 01:45:21,280 I CAN'T ARGUE THERE'S SUFFICIENT 2427 01:45:21,280 --> 01:45:22,880 RESOURCES IN THIS SPACE AND WE 2428 01:45:22,880 --> 01:45:25,400 CAN ALWAYS DO MORE. 2429 01:45:25,400 --> 01:45:28,520 BUT I DON'T THINK IT'S UNDER 2430 01:45:28,520 --> 01:45:29,160 REPRESENTED IN THE GRAND SCHEME 2431 01:45:29,160 --> 01:45:32,080 OF THINGS. 2432 01:45:32,080 --> 01:45:33,120 >> THANK YOU. 2433 01:45:33,120 --> 01:45:36,120 SO WE HAVE, I BELIEVE, A COUPLE 2434 01:45:36,120 --> 01:45:38,880 POLLS JUST TO SEE WHAT PEOPLE 2435 01:45:38,880 --> 01:45:40,680 THINK ABOUT THIS. 2436 01:45:40,680 --> 01:45:42,600 WHAT OUR TEAM WAS THINKING ABOUT 2437 01:45:42,600 --> 01:45:47,480 WAS TRYING TO CREATE A SECTION 2438 01:45:47,480 --> 01:45:49,040 THAT WOULD ADDRESS COVID-19 2439 01:45:49,040 --> 01:45:50,480 ISSUES IN THE NEW PLAN AND NOT A 2440 01:45:50,480 --> 01:45:52,160 QUESTION ONGOING FOREVER BUT 2441 01:45:52,160 --> 01:45:54,560 WOULD BE HIGHLIGHTED IN THE NEXT 2442 01:45:54,560 --> 01:45:57,640 STRATEGIC PLAN SINCE IT'S BEEN 2443 01:45:57,640 --> 01:45:59,040 AN ISSUE OF INTEREST AND A LOT 2444 01:45:59,040 --> 01:46:00,480 OF CONCERNS IN THE COMMUNITY AND 2445 01:46:00,480 --> 01:46:01,720 I APPRECIATE THE IDEA OF 2446 01:46:01,720 --> 01:46:05,680 THINKING ABOUT OUT AS A 2447 01:46:05,680 --> 01:46:07,240 FORWARD-FACING OBJECTIVE NOT 2448 01:46:07,240 --> 01:46:09,080 OBJECTIVE, FORWARD-FACING 2449 01:46:09,080 --> 01:46:10,480 DISCUSSION HOW WE CAN ALSO THINK 2450 01:46:10,480 --> 01:46:11,680 ABOUT THE FUTURE NOW THAT WE'VE 2451 01:46:11,680 --> 01:46:13,360 BEEN THROUGH WHAT WE HAVE AND 2452 01:46:13,360 --> 01:46:15,280 WE'VE LEARNED SOME LESSONS AND 2453 01:46:15,280 --> 01:46:16,720 THINGS HELPFUL FOR THE COMMUNITY 2454 01:46:16,720 --> 01:46:19,880 WHAT CAN WE DO ABOUT THOSE. 2455 01:46:19,880 --> 01:46:24,400 WE WOULD LIKE TO SEE WHAT THE 2456 01:46:24,400 --> 01:46:25,880 COMMITTEE'S THOUGHTS ARE ON 2457 01:46:25,880 --> 01:46:27,880 CONSIDER WHETHER DISPARITIES IN 2458 01:46:27,880 --> 01:46:30,520 UNDER SERVED COMMUNITIES IS A 2459 01:46:30,520 --> 01:46:32,080 CROSS-CUTTING THEME WE'D LIKE TO 2460 01:46:32,080 --> 01:46:33,400 BE TRACKING SIMILAR TO HOW WE 2461 01:46:33,400 --> 01:46:35,360 TRACK RESEARCH ON WOMEN AND 2462 01:46:35,360 --> 01:46:36,640 GIRLS. 2463 01:46:36,640 --> 01:46:38,080 IT'S SOMETHING OVERLAID ON TOP 2464 01:46:38,080 --> 01:46:40,080 OF THE OTHER OBJECTIVES BECAUSE 2465 01:46:40,080 --> 01:46:42,640 WOMEN AND GIRLS POPS UP IN EVERY 2466 01:46:42,640 --> 01:46:43,760 CATEGORY SO IT'S JUST AN 2467 01:46:43,760 --> 01:46:44,880 ADDITIONAL TRACKING. 2468 01:46:44,880 --> 01:46:47,440 IT'S NOT A DOUBLE COUNTING. 2469 01:46:47,440 --> 01:46:49,280 THAT'S SOMETHING OUR TEAM IS 2470 01:46:49,280 --> 01:46:50,040 INTERESTED IN POTENTIALLY DOING 2471 01:46:50,040 --> 01:46:51,720 BUT WANTED TO SEE HOW THE 2472 01:46:51,720 --> 01:46:53,600 COMMITTEE FEELS ABOUT IT. 2473 01:46:53,600 --> 01:46:57,200 IF THE TEAM CAN PUT UP THE POLL 2474 01:46:57,200 --> 01:46:58,800 I'D LIKE MEMBERS AND THIS 2475 01:46:58,800 --> 01:46:59,840 INCLUDES FEDERAL MEMBERS SO 2476 01:46:59,840 --> 01:47:01,520 FEDERAL AND NON-FEDERAL MEMBERS 2477 01:47:01,520 --> 01:47:02,880 CAN VOTE IN THE POLL. 2478 01:47:02,880 --> 01:47:06,080 THIS IS JUST AN OPINION POLL NOT 2479 01:47:06,080 --> 01:47:08,800 AN OFFICIAL COMMITTEE VOTE FOR 2480 01:47:08,800 --> 01:47:09,080 AN ACTION. 2481 01:47:09,080 --> 01:47:10,360 BUT IF YOU COULD JUST RESPOND TO 2482 01:47:10,360 --> 01:47:12,280 THE POLL QUESTIONS WE'D LIKE TO 2483 01:47:12,280 --> 01:47:13,320 GET A TEMPERATURE READ FROM YOU 2484 01:47:13,320 --> 01:47:17,320 ABOUT WHAT YOU THINK. 2485 01:47:17,320 --> 01:47:19,000 WE'LL GIVE A MINUTE AND ONCE YOU 2486 01:47:19,000 --> 01:47:20,640 THINK EVERYBODY HAS PUT IN YOUR 2487 01:47:20,640 --> 01:47:22,000 OPINIONS YOU CAN GO AHEAD AND 2488 01:47:22,000 --> 01:47:24,400 SHOW THE POLL ON ZOOM AND I'LL 2489 01:47:24,400 --> 01:47:24,960 DESCRIBE IT FOR VIEWERS ON 2490 01:47:24,960 --> 01:47:41,440 VIDEOCAST. 2491 01:47:41,440 --> 01:47:42,200 THE QUESTION WAS WOULD THE 2492 01:47:42,200 --> 01:47:44,440 COMMITTEE LIKE TO SEE' RESPONSE 2493 01:47:44,440 --> 01:47:46,000 TO THE COVID-19 AND 75% SAID YES 2494 01:47:46,000 --> 01:47:48,000 AND 25% SAID NO. 2495 01:47:48,000 --> 01:47:50,600 SOUNDS LIKE THE MAJORITY IS YOU 2496 01:47:50,600 --> 01:47:52,240 WOULD LIKE SOME DISCUSSION OF 2497 01:47:52,240 --> 01:47:52,520 COVID-19. 2498 01:47:52,520 --> 01:47:59,360 WE WILL PLAN TO DO THAT. 2499 01:47:59,360 --> 01:48:01,360 NUMBER 2 WOULD YOU LIKE TO TRACK 2500 01:48:01,360 --> 01:48:02,880 ACTIVITIES RELATED TO 2501 01:48:02,880 --> 01:48:04,160 DISPARITIES IN UNDER SERVED 2502 01:48:04,160 --> 01:48:07,040 COMMUNITIES AND IT WAS A 95% YES 2503 01:48:07,040 --> 01:48:08,880 AND 5% NO. 2504 01:48:08,880 --> 01:48:10,000 THAT'S ALSO THE MAJORITY OF THE 2505 01:48:10,000 --> 01:48:10,560 COMMITTEE. 2506 01:48:10,560 --> 01:48:15,800 OUR TEAM WILL TAKE THAT INTO 2507 01:48:15,800 --> 01:48:17,040 CONSIDERATION AND PLAN TO 2508 01:48:17,040 --> 01:48:19,120 INCLUDE THOSE IN THE FIRST DRAFT 2509 01:48:19,120 --> 01:48:23,280 AND WE'RE DOING A FIRST DRAFT 2510 01:48:23,280 --> 01:48:24,960 BECAUSE IF WE WERE ASSIGNING 2511 01:48:24,960 --> 01:48:26,360 PEOPLE IT WOULD TAKE LONGER TO 2512 01:48:26,360 --> 01:48:26,920 GET IT DONE. 2513 01:48:26,920 --> 01:48:28,640 WE'LL COME TO YOU WITH A DRAFT 2514 01:48:28,640 --> 01:48:29,400 AND YOU'LL HAVE A CHANCE TO 2515 01:48:29,400 --> 01:48:32,280 SHARE YOUR FEEDBACK ON IT. 2516 01:48:32,280 --> 01:48:33,160 THANK YOU. 2517 01:48:33,160 --> 01:48:37,040 THAT WORKED REALLY WELL. 2518 01:48:37,040 --> 01:48:40,560 I'M GLAD THAT WORKED OUT. 2519 01:48:40,560 --> 01:48:43,400 NEXT, I'D LIKE TO TALK WITH THE 2520 01:48:43,400 --> 01:48:44,040 BUDGET RECOMMENDATION CONGRESS 2521 01:48:44,040 --> 01:48:46,000 REQUIRES US TO INCLUDE IN THE 2522 01:48:46,000 --> 01:48:46,200 PLAN. 2523 01:48:46,200 --> 01:48:49,120 IN THE 2016 AND 2017 STRATEGIC 2524 01:48:49,120 --> 01:48:51,200 PLAN, THE COMMITTEE DECIDED TO 2525 01:48:51,200 --> 01:48:56,520 CALL FOR A DOUBLE OF THE 2015 2526 01:48:56,520 --> 01:48:58,120 ASD RESEARCH BUDGET WHICH AT THE 2527 01:48:58,120 --> 01:49:00,720 TIME THIS WAS THE AMOUNT OUR 2528 01:49:00,720 --> 01:49:03,640 TEAM HAD CALCULATED FROM ACROSS 2529 01:49:03,640 --> 01:49:06,360 BOTH FEDERAL AND NON-FEDERAL 2530 01:49:06,360 --> 01:49:10,480 ENTITIES WHO ARE FUNDING 2531 01:49:10,480 --> 01:49:13,080 RESEARCH ON AUTISM. 2532 01:49:13,080 --> 01:49:15,520 AND THE DOUBLING WOULD HAVE 2533 01:49:15,520 --> 01:49:18,600 RESULTED IN THE $865 LEVEL AND 2534 01:49:18,600 --> 01:49:20,200 WANTED TO SEE IF WE CAN REACH 2535 01:49:20,200 --> 01:49:22,160 THAT BY 2020 AND YOU'LL SEE 2536 01:49:22,160 --> 01:49:25,800 WHERE WE ARE RIGHT NOW. 2537 01:49:25,800 --> 01:49:28,680 WE HAVE TRACKED WHAT THE ACTUAL 2538 01:49:28,680 --> 01:49:31,680 SPENDING WAS COMPARED TO THE 2539 01:49:31,680 --> 01:49:33,920 STRATEGIC PLAN BUDGET 2540 01:49:33,920 --> 01:49:34,280 RECOMMENDATIONS. 2541 01:49:34,280 --> 01:49:36,320 THE BUDGET RECOMMENDATION IS IN 2542 01:49:36,320 --> 01:49:38,760 THE YELLOW BARS OR BARS TO THE 2543 01:49:38,760 --> 01:49:44,520 RIGHT AND THE BARS TO THE LEFT 2544 01:49:44,520 --> 01:49:49,120 IN THE BLUE ARE THE ACTUAL AND 2545 01:49:49,120 --> 01:49:56,840 WE HAVEN'T INCLUDE THE 2019 AND 2546 01:49:56,840 --> 01:49:59,880 2020 BUT THERE'S ABOVE $240 2547 01:49:59,880 --> 01:50:02,240 MILLION AND IT'S NOT NEAR THE 2548 01:50:02,240 --> 01:50:03,240 TOP OF THE BUDGET 2549 01:50:03,240 --> 01:50:03,680 RECOMMENDATION. 2550 01:50:03,680 --> 01:50:06,520 THE IACC'S RECOMMENDATION WAS 2551 01:50:06,520 --> 01:50:08,640 BASICALLY A 15% ANNUAL INCREASE 2552 01:50:08,640 --> 01:50:10,840 IN ASD RESEARCH FUNDING ACROSS 2553 01:50:10,840 --> 01:50:13,080 FEDERAL AND PRIVATE FUNDERS AND 2554 01:50:13,080 --> 01:50:15,080 THE REALITY WAS IT WASN'T AT 2555 01:50:15,080 --> 01:50:18,160 SUCH A STEEP LEVEL HOWEVER, 2556 01:50:18,160 --> 01:50:19,520 THERE HAS BEEN A CONTINUING 2557 01:50:19,520 --> 01:50:19,760 INCREASE. 2558 01:50:19,760 --> 01:50:25,080 SO MY QUESTION FOR THE COMMITTEE 2559 01:50:25,080 --> 01:50:27,560 IS WHAT SHOULD WE DO ABOUT THE 2560 01:50:27,560 --> 01:50:28,200 NEXT BUDGET RECOMMENDATION IN 2561 01:50:28,200 --> 01:50:28,680 THE NEW PLAN. 2562 01:50:28,680 --> 01:50:30,840 WE CAME UP WITH TWO OPTIONS AND 2563 01:50:30,840 --> 01:50:33,520 AN OTHER IF NEITHER IS 2564 01:50:33,520 --> 01:50:34,360 APPEALING. 2565 01:50:34,360 --> 01:50:36,240 SO OPTION 1, WOULD BE WE COULD 2566 01:50:36,240 --> 01:50:38,640 EXTEND THE TIME LINE ON THE 2567 01:50:38,640 --> 01:50:40,560 CURRENT RECOMMENDATION THAT WAS 2568 01:50:40,560 --> 01:50:44,640 BASED ON THE 2015 BUDGET AND SEE 2569 01:50:44,640 --> 01:50:49,040 IF WE CAN REACH $685 MILLION BY 2570 01:50:49,040 --> 01:50:50,640 2025 OR OPTION NUMBER 2 IS 2571 01:50:50,640 --> 01:50:51,640 RECOMMENDING A DOUBLING OF THE 2572 01:50:51,640 --> 01:50:53,480 RESEARCH FUNDING AMOUNT FOR 2020 2573 01:50:53,480 --> 01:50:55,440 WHICH IS GOING TO BE IN THE 2574 01:50:55,440 --> 01:50:56,760 NEIGHBORHOOD OF $130 MILLION TO 2575 01:50:56,760 --> 01:51:00,560 ASK FOR A DOUBLING OF THAT TO 2576 01:51:00,560 --> 01:51:03,400 $860 MILLION BY 2025. 2577 01:51:03,400 --> 01:51:05,560 AND OPTION 3 IS NEITHER ONE 2578 01:51:05,560 --> 01:51:08,040 APPEALS AND IF THE MAJORITY OF 2579 01:51:08,040 --> 01:51:10,080 THE COMMITTEE THINKS THAT THEN 2580 01:51:10,080 --> 01:51:11,680 WE MAY HAVE TO GO BACK TO THE 2581 01:51:11,680 --> 01:51:15,120 DRAWING BOARD FOR OTHER IDEAS 2582 01:51:15,120 --> 01:51:17,080 BUT WE'LL POLL YOU ON THIS AS 2583 01:51:17,080 --> 01:51:17,960 WELL. 2584 01:51:17,960 --> 01:51:24,760 IF THE TEAM CAN PUT UP THE POLL. 2585 01:51:24,760 --> 01:51:39,040 >> HAVE YOU A QUESTION. 2586 01:51:39,040 --> 01:51:43,040 >> HOW IS THIS RECOMMENDATION 2587 01:51:43,040 --> 01:51:48,560 USED IN BEING AMBITIOUS WHAT WE 2588 01:51:48,560 --> 01:51:52,120 WOULD LIKE TO SEE FOR FUNDING OR 2589 01:51:52,120 --> 01:51:53,520 TO BE MORE CONSERVATIVE AND HOPE 2590 01:51:53,520 --> 01:51:54,760 FOR THINGS TO GO. 2591 01:51:54,760 --> 01:52:01,360 I'M IN THE SURE WHAT MAKES THE 2592 01:52:01,360 --> 01:52:01,960 MOST SENSE. 2593 01:52:01,960 --> 01:52:03,920 I THINK EVERYBODY WOULD LIKE TO 2594 01:52:03,920 --> 01:52:05,760 SEE OPTION NUMBER 2 BUT THINK 2595 01:52:05,760 --> 01:52:10,320 HOW THE INFORMATION WOULD BE 2596 01:52:10,320 --> 01:52:15,160 USED I'D LOVE TO HEAR WHAT IS 2597 01:52:15,160 --> 01:52:25,800 THE MOST INFLUENCE -- 2598 01:52:25,800 --> 01:52:26,800 INFLUENTIAL. 2599 01:52:26,800 --> 01:52:28,960 >> I ENCOURAGE OTHERS WHO HAVE 2600 01:52:28,960 --> 01:52:29,800 OPINIONS AND KNOWLEDGE ABOUT IT 2601 01:52:29,800 --> 01:52:32,560 TO CHIME IN AS WELL. 2602 01:52:32,560 --> 01:52:35,040 I DON'T HAVE A DEFINITIVE ANSWER 2603 01:52:35,040 --> 01:52:35,840 TO EITHER OF THOSE PARTS. 2604 01:52:35,840 --> 01:52:40,480 SO HOW IS THIS USED? 2605 01:52:40,480 --> 01:52:41,480 THE BUDGET RECOMMENDATION IS 2606 01:52:41,480 --> 01:52:44,840 REQUESTED BY CONGRESS. 2607 01:52:44,840 --> 01:52:47,280 WE HAVE CHOSEN AS SUSAN HAS 2608 01:52:47,280 --> 01:52:49,160 ARTICULATED TO GIVE A BUDGET 2609 01:52:49,160 --> 01:52:50,120 RECOMMENDATION SPECIFICALLY 2610 01:52:50,120 --> 01:52:52,400 ABOUT RESEARCH AS OPPOSED TO 2611 01:52:52,400 --> 01:52:54,160 ABOUT THE SUM TOTAL OF AUTISM 2612 01:52:54,160 --> 01:52:56,480 CARE BECAUSE IT'S SO HARD FOR US 2613 01:52:56,480 --> 01:52:57,800 TO FIGURE OUT EVEN WHAT THE SUM 2614 01:52:57,800 --> 01:53:00,120 TOTAL OF COSTS OF CARE AND 2615 01:53:00,120 --> 01:53:01,960 SERVICES FOR INDIVIDUALS FOR 2616 01:53:01,960 --> 01:53:06,760 AUTISM AT THE FEDERAL LEVEL ARE. 2617 01:53:06,760 --> 01:53:09,560 THAT'S BEEN ESSENTIALLY ACCEPTED 2618 01:53:09,560 --> 01:53:10,840 BY CONGRESS IN THE PAST. 2619 01:53:10,840 --> 01:53:12,840 NOW, HOW DOES CONGRESS USE IT? 2620 01:53:12,840 --> 01:53:17,160 WELL, THERE'S SOME PRACTICAL 2621 01:53:17,160 --> 01:53:18,920 IMPACT OF THESE NUMBERS. 2622 01:53:18,920 --> 01:53:20,720 THERE HAVE BEEN FOR EXAMPLE, 2623 01:53:20,720 --> 01:53:25,520 AUTHORIZATION BILLS INTRODUCED 2624 01:53:25,520 --> 01:53:28,120 INTO CONGRESS THAT AUTHORIZE THE 2625 01:53:28,120 --> 01:53:30,160 FEDERAL GOVERNMENT OR NIH OR 2626 01:53:30,160 --> 01:53:35,400 OTHER AGENCIES TO SPEND THAT 2627 01:53:35,400 --> 01:53:41,800 AMOUNT IN RESEARCH BY THE YEAR 2628 01:53:41,800 --> 01:53:42,040 2020. 2629 01:53:42,040 --> 01:53:44,600 I'M NOT AWARE ANY OF THOSE HAVE 2630 01:53:44,600 --> 01:53:45,280 ACTUALLY PASSED THOUGH SUSAN MAY 2631 01:53:45,280 --> 01:53:50,760 KNOW. 2632 01:53:50,760 --> 01:53:53,280 IF OUR LEGISLATIVE DIRECTOR HAS 2633 01:53:53,280 --> 01:53:56,280 ANY INPUT I'D BE HAPPY HEAR FROM 2634 01:53:56,280 --> 01:53:58,120 HER IF SHE'S ON THE LINE BUT 2635 01:53:58,120 --> 01:54:04,280 THEY'VE BEEN INTRODUCED WITH THE 2636 01:54:04,280 --> 01:54:05,760 EXPLICIT RECOMMENDATION THE IACC 2637 01:54:05,760 --> 01:54:06,480 RECOMMENDED IT. 2638 01:54:06,480 --> 01:54:08,880 BEFORE WE GET TOO EXCITE ABOUT 2639 01:54:08,880 --> 01:54:10,320 THE INTRODUCTION OR EVEN PASSAGE 2640 01:54:10,320 --> 01:54:12,040 OF AN AUTHORIZATION BILL, THE 2641 01:54:12,040 --> 01:54:13,160 AUTHORIZATION JUST GIVES THE 2642 01:54:13,160 --> 01:54:15,000 AUTHORITY TO SPEND THAT MONEY 2643 01:54:15,000 --> 01:54:17,480 BUT WE CAN'T ACTUALLY SPEND THE 2644 01:54:17,480 --> 01:54:22,160 MONEY UNTIL THE APPROPRIATIONS 2645 01:54:22,160 --> 01:54:24,840 HAVE BEEN MADE AND APPROPRIATORS 2646 01:54:24,840 --> 01:54:26,440 HAVE NOT RESPONDED WITH A 2647 01:54:26,440 --> 01:54:27,440 SIMILAR INCREASE TO THE RESEARCH 2648 01:54:27,440 --> 01:54:28,560 AGENCIES THAT WOULD ENABLE A 2649 01:54:28,560 --> 01:54:34,800 BUDGET OF THAT SIZE. 2650 01:54:34,800 --> 01:54:36,400 THAT'S AN ANSWER IN HOW IT'S 2651 01:54:36,400 --> 01:54:36,600 SEEN. 2652 01:54:36,600 --> 01:54:38,720 IT'S SEEN BY CONGRESS AS AN 2653 01:54:38,720 --> 01:54:40,240 ADVISORY OPINION WITH WEIGHT AND 2654 01:54:40,240 --> 01:54:42,520 THEY USE IT TO ATTEMPT TO 2655 01:54:42,520 --> 01:54:45,280 INCREASE THE RESOURCES AVAILABLE 2656 01:54:45,280 --> 01:54:47,400 FOR RESEARCH IN AUTISM ACROSS A 2657 01:54:47,400 --> 01:54:49,600 NUMBER DIFFERENT FEDERAL AGENCY. 2658 01:54:49,600 --> 01:54:50,600 IT IS HAVING AN IMPACT FROM THAT 2659 01:54:50,600 --> 01:54:54,840 PERSPECTIVE. 2660 01:54:54,840 --> 01:54:56,240 THE SECOND QUESTION IS MORE 2661 01:54:56,240 --> 01:54:56,840 CHALLENGING TO ASK. 2662 01:54:56,840 --> 01:54:59,160 WHAT'S THE MAGIC NUMBER OR WHAT 2663 01:54:59,160 --> 01:55:01,960 SHOULD WE BE SHOOTING FOR FROM 2664 01:55:01,960 --> 01:55:03,960 AN ADVISORY PERSPECTIVE. 2665 01:55:03,960 --> 01:55:06,800 IS IT INAPPROPRIATE OR 2666 01:55:06,800 --> 01:55:08,360 PROBLEMATIC TO SHOOT FOR THE 2667 01:55:08,360 --> 01:55:15,400 STARS SO HIGH IT BECOMES UNRAFLT 2668 01:55:15,400 --> 01:55:21,040 UNREALISTIC OR IF WE SET A MORE 2669 01:55:21,040 --> 01:55:21,640 MODEST NUMBER BECAUSE THAT 2670 01:55:21,640 --> 01:55:23,720 DOESN'T ADEQUATELY SPEAK TO THE 2671 01:55:23,720 --> 01:55:24,960 NEEDS OF THE COMMUNITY. 2672 01:55:24,960 --> 01:55:28,280 SO MY OWN OPINION IS WE SHOULD 2673 01:55:28,280 --> 01:55:30,120 LOOK AT WHAT WE'RE DOING AND 2674 01:55:30,120 --> 01:55:35,120 WHAT WE'RE NOT DOING FROM A 2675 01:55:35,120 --> 01:55:36,920 RESEARCH PERSPECTIVE AND MAKE AA 2676 01:55:36,920 --> 01:55:38,440 REASONABLE AND EDUCATED GUESS IN 2677 01:55:38,440 --> 01:55:40,680 WHAT WE CAN DO WITH MORE 2678 01:55:40,680 --> 01:55:42,080 RESOURCES AND TRY TO MATCH THE 2679 01:55:42,080 --> 01:55:44,880 RESOURCES TO WHAT WE'RE DOING. 2680 01:55:44,880 --> 01:55:48,600 THE DOUBLING IN 2020 WAS 2681 01:55:48,600 --> 01:55:50,040 COGNIZANT OF THAT. 2682 01:55:50,040 --> 01:55:52,400 MANY INDIVIDUALS HAVE COMMENTED 2683 01:55:52,400 --> 01:55:54,800 JUST A MOMENT AGO WE HEARD WE 2684 01:55:54,800 --> 01:55:57,520 NEED MORE RESOURCES PUT INTO 2685 01:55:57,520 --> 01:55:58,200 COMMUNICATION STUDIES. 2686 01:55:58,200 --> 01:56:01,760 THE INCREASED RESOURCES FOR 2687 01:56:01,760 --> 01:56:05,080 ADULTS WITH AUTISM WAS A PUSH WE 2688 01:56:05,080 --> 01:56:06,880 MADE AT IACC SEVERAL YEARS BACK 2689 01:56:06,880 --> 01:56:09,840 AND PUT RESOURCES INTO AT NIHM 2690 01:56:09,840 --> 01:56:10,920 AND OTHER AGENCIES. 2691 01:56:10,920 --> 01:56:13,720 I THINK WHEN WE THINK ABOUT THE 2692 01:56:13,720 --> 01:56:15,240 INITIAL DOUBLING, THAT WAS WHAT 2693 01:56:15,240 --> 01:56:19,760 MOST OF US HAD IN MIND. 2694 01:56:19,760 --> 01:56:23,560 ANYWAY, THAT'S MY BEST SHOT AT 2695 01:56:23,560 --> 01:56:25,160 SAYING, YEAH, I THINK THERE'S A 2696 01:56:25,160 --> 01:56:29,240 COST FOR REACHING TOO FAR AND A 2697 01:56:29,240 --> 01:56:32,080 COST FOR NOT FAR ENOUGH BUT IT'S 2698 01:56:32,080 --> 01:56:34,280 REALLY HARD TO KNOW EXACTLY 2699 01:56:34,280 --> 01:56:40,920 WHERE TO PUT THE NUMBER. 2700 01:56:40,920 --> 01:56:48,120 NOT ALL THAT HELPFUL BUT BACK TO 2701 01:56:48,120 --> 01:56:48,320 SUSAN. 2702 01:56:48,320 --> 01:56:50,000 >> DINAH, DO YOU HAVE A 2703 01:56:50,000 --> 01:56:50,280 QUESTION? 2704 01:56:50,280 --> 01:56:55,760 >> THE LAST TIME THERE WAS 2705 01:56:55,760 --> 01:56:58,680 CONVERSATION ABOUT THE BUDGET WE 2706 01:56:58,680 --> 01:57:01,760 DID REACH FOR THE STARS BECAUSE 2707 01:57:01,760 --> 01:57:03,360 OF THE MANIFESTED UNDER OF 2708 01:57:03,360 --> 01:57:04,160 RESEARCH AND WE WERE TRYING TO 2709 01:57:04,160 --> 01:57:12,760 GEAR UP TO CATCH UP. 2710 01:57:12,760 --> 01:57:14,760 I THINK THE VAST MAJORITY OF 2711 01:57:14,760 --> 01:57:16,400 PEOPLE UNDER 65 EXPERIENCING 2712 01:57:16,400 --> 01:57:17,760 COVID OUTCOMES WHICH ARE 2713 01:57:17,760 --> 01:57:19,360 NEGATIVE MANY ARE PEOPLE OF 2714 01:57:19,360 --> 01:57:22,080 COLOR AND OF COURSE AUTISM WOULD 2715 01:57:22,080 --> 01:57:24,880 BE INCLUDED IN THAT POPULATION 2716 01:57:24,880 --> 01:57:28,000 AND I THINK ALSO IF WE CAN 2717 01:57:28,000 --> 01:57:30,280 PROVIDE A CAVEAT WE'LL BE 2718 01:57:30,280 --> 01:57:32,680 FLIPPING THAT IMBALANCE BETWEEN 2719 01:57:32,680 --> 01:57:33,640 CAUSATION RESEARCH VERSUS 2720 01:57:33,640 --> 01:57:35,640 OUTCOME RESEARCH AND OUR FUNDERS 2721 01:57:35,640 --> 01:57:37,680 CAN SEE THE POTENTIAL FOR 2722 01:57:37,680 --> 01:57:39,840 RESEARCH THAT ACTUALLY CAN 2723 01:57:39,840 --> 01:57:45,360 ENHANCE OUTCOMES IN REAL TIME AS 2724 01:57:45,360 --> 01:57:49,160 COMPARED TO HISTORICAL MORE 2725 01:57:49,160 --> 01:57:51,320 EMPHASIS ON CAUSATION I THINK IT 2726 01:57:51,320 --> 01:57:53,560 WOULD BE EASIER TO JUSTIFY THE 2727 01:57:53,560 --> 01:57:57,280 BIGGER ASK, TO BE HONEST. 2728 01:57:57,280 --> 01:58:00,920 I THINK OPTION 2 ALSO 2729 01:58:00,920 --> 01:58:02,760 COMMUNICATES THE DIRE THE NEED 2730 01:58:02,760 --> 01:58:05,160 IN EVEN IF THE COME IN WITH A 2731 01:58:05,160 --> 01:58:10,640 LESSER AMOUNT THEY AWARE OF HOW 2732 01:58:10,640 --> 01:58:19,520 MUCH THE NEED IS INLIGHT OF THE 2733 01:58:19,520 --> 01:58:21,280 IMPLICATIONS MUCH COVID BUT I 2734 01:58:21,280 --> 01:58:21,920 APPRECIATE THE POINT ABOUT GOING 2735 01:58:21,920 --> 01:58:28,440 TOO BIG. 2736 01:58:28,440 --> 01:58:35,760 JAIL LEN DO YOU HAVE A COMMENT? 2737 01:58:35,760 --> 01:58:39,120 >> WE WERE ASKED TO INCREASE THE 2738 01:58:39,120 --> 01:58:40,200 PROPORTION OF FUNDS COMING 2739 01:58:40,200 --> 01:58:41,720 THROUGH NIH AND YOU CAN HELP 2740 01:58:41,720 --> 01:58:44,640 WITH MY VERBIAGE ON SOME OF THIS 2741 01:58:44,640 --> 01:58:46,760 SO GO FROM 2% ON THE AUTISM 2742 01:58:46,760 --> 01:58:47,760 BUDGET TO 4% OF THE AUTISM 2743 01:58:47,760 --> 01:58:52,880 BUDGET. 2744 01:58:52,880 --> 01:58:55,880 IT ISN'T A HUGE AMOUNT OF MONEY. 2745 01:58:55,880 --> 01:58:58,440 CAN WE GET IN ON THE GRANULAR 2746 01:58:58,440 --> 01:59:01,000 LEVEL WITH THIS TYPE OF TROKD 2747 01:59:01,000 --> 01:59:04,280 SAY WE WOULD LIKE TO SEE A 2748 01:59:04,280 --> 01:59:05,360 LARGER PERCENTAGE OF FUNDING 2749 01:59:05,360 --> 01:59:07,800 THAT WOULD BE GRANTED TO GO INTO 2750 01:59:07,800 --> 01:59:10,720 THIS RESEARCH THAT IS SORELY 2751 01:59:10,720 --> 01:59:15,480 NEEDED AND SORELY NEGLECTED? 2752 01:59:15,480 --> 01:59:17,160 >> SO A LARGER PERCENTAGE OF THE 2753 01:59:17,160 --> 01:59:19,800 FUNDING THAT COMES THROUGH THE 2754 01:59:19,800 --> 01:59:22,560 PROCESS OF NIH TO BE DIRECTED 2755 01:59:22,560 --> 01:59:26,120 TOWARD THE ISSUES FACING ADULTS 2756 01:59:26,120 --> 01:59:30,040 WITH AUTISM. 2757 01:59:30,040 --> 01:59:31,360 THAT'S WHAT WE TALKED ABOUT IN 2758 01:59:31,360 --> 01:59:34,560 THE PUBLIC COMMENTS I BELIEVE 2759 01:59:34,560 --> 01:59:36,080 FOUR OR FIVE YEARS AGO AS WE 2760 01:59:36,080 --> 01:59:37,440 WERE ASKED TO ADDRESS THINGS TO 2761 01:59:37,440 --> 01:59:41,760 INCREASE FROM 2% TO 4% OF WHAT 2762 01:59:41,760 --> 01:59:50,600 THE NIH BUDGET WAS. 2763 01:59:50,600 --> 01:59:51,760 DIRECTED TOWARD ADULT AUTISM. 2764 01:59:51,760 --> 01:59:53,760 >> JOSH, I DON'T KNOW IF YOU 2765 01:59:53,760 --> 01:59:54,760 HAVE COMMENTS. 2766 01:59:54,760 --> 01:59:55,480 >> I HAVE OPINIONS. 2767 01:59:55,480 --> 01:59:56,240 I'D LIKE TO HEAR FROM OTHERS AS 2768 01:59:56,240 --> 01:59:59,280 WELL. 2769 01:59:59,280 --> 02:00:01,400 WE'RE NOT TASKED WITH THAT LEVEL 2770 02:00:01,400 --> 02:00:05,680 OF GRANULARITY BY CONGRESS AND 2771 02:00:05,680 --> 02:00:06,960 IF THE COMMITTEE MAKES SUCH 2772 02:00:06,960 --> 02:00:12,400 RECOMMENDATIONS I WANT TO 2773 02:00:12,400 --> 02:00:15,200 CAUTION THOUGH THE DIFFERENCE OF 2774 02:00:15,200 --> 02:00:16,360 UNDERSTANDING RECOMMENDATION AND 2775 02:00:16,360 --> 02:00:18,160 THE DECISION MAKING POWER OF 2776 02:00:18,160 --> 02:00:33,880 THIS BODY WHICH IS THIS BODY 2777 02:00:33,880 --> 02:00:37,600 DOESN'T HAVE THE POWER BUT JUST 2778 02:00:37,600 --> 02:00:39,480 RECOMMENDATIONS AND GIVE A 2779 02:00:39,480 --> 02:00:40,920 BETTER UNDERSTANDING FROM THE 2780 02:00:40,920 --> 02:00:43,280 FEDERAL AND NON-FEDERAL PARTNER 2781 02:00:43,280 --> 02:00:46,080 PERSPECTIVE HOW DECISIONS ARE 2782 02:00:46,080 --> 02:00:56,360 MADE ABOUT FUNDING. 2783 02:00:56,360 --> 02:00:59,320 IT'S NOT LIKE WE SAY WE'LL SPEND 2784 02:00:59,320 --> 02:01:02,120 X PERCENT ON THIS OR ENHANCING 2785 02:01:02,120 --> 02:01:05,880 COMMUNICATION IN TOM. 2786 02:01:05,880 --> 02:01:08,040 -- AUTISM BUT WE LISTEN TO THE 2787 02:01:08,040 --> 02:01:12,560 RECOMMENDATIONS OF THIS 2788 02:01:12,560 --> 02:01:15,560 COMMITTEE IN TRYING TO INCREASE 2789 02:01:15,560 --> 02:01:18,160 AVAILABILITY AND DEMAND FOR 2790 02:01:18,160 --> 02:01:19,160 SOURCE FOR RESEARCH WHERE WE 2791 02:01:19,160 --> 02:01:26,800 RECOGNIZE GAPS OCCURRING. 2792 02:01:26,800 --> 02:01:28,640 I'M NOT SURE IF WE WERE TO GET 2793 02:01:28,640 --> 02:01:30,160 IN THE BUSINESS OF MAKING MORE 2794 02:01:30,160 --> 02:01:30,800 SPECIFIC RECOMMENDATIONS ABOUT 2795 02:01:30,800 --> 02:01:33,240 SPECIFIC AREAS, I THINK THIS 2796 02:01:33,240 --> 02:01:35,440 COMMITTEE WOULD GET QUITE BOGGED 2797 02:01:35,440 --> 02:01:39,480 DOWN IN DITCH AND POTENTIALLY 2798 02:01:39,480 --> 02:01:40,240 COMPETING RECOMMENDATIONS FOR 2799 02:01:40,240 --> 02:01:47,400 ADDITIONAL RESOURCES. 2800 02:01:47,400 --> 02:01:48,840 WHAT HAS BEEN EXCEPTIONALLY 2801 02:01:48,840 --> 02:01:50,720 USEFUL FROM THE CONGRESSIONAL 2802 02:01:50,720 --> 02:01:52,360 PERSPECTIVE AND THE PERSPECTIVE 2803 02:01:52,360 --> 02:01:56,680 OF FEDERAL AGENCIES IS HEARING 2804 02:01:56,680 --> 02:01:59,760 THE GENERALITIES AND YOU CAN SEE 2805 02:01:59,760 --> 02:02:03,880 THE RESULT OF THOSE GENERALITIES 2806 02:02:03,880 --> 02:02:05,160 AND SHOULD WE MAKE 2807 02:02:05,160 --> 02:02:05,760 RECOMMENDATIONS ABOUT THE 2808 02:02:05,760 --> 02:02:07,240 PERCENTAGE I DON'T THINK IT WILL 2809 02:02:07,240 --> 02:02:11,160 BE PRODUBLTHIVE AND -- 2810 02:02:11,160 --> 02:02:14,000 PRODUCTIVE AND COMPLICATED 2811 02:02:14,000 --> 02:02:15,520 DISCUSSION ABOUT THE POTENTIALLY 2812 02:02:15,520 --> 02:02:16,680 COMPETING PRIORITY. 2813 02:02:16,680 --> 02:02:19,040 SHOULD WE MAKE A BUDGET 2814 02:02:19,040 --> 02:02:22,960 RECOMMENDATION OVERALL, 2815 02:02:22,960 --> 02:02:23,280 ABSOLUTELY. 2816 02:02:23,280 --> 02:02:26,880 AND SHOULD WE TAILOR THAT FOR 2817 02:02:26,880 --> 02:02:31,240 INFORMED BY WHAT WE'RE DOING FOR 2818 02:02:31,240 --> 02:02:34,240 EMPHASIS CHANGES? 2819 02:02:34,240 --> 02:02:38,600 ABSOLUTELY. 2820 02:02:38,600 --> 02:02:40,160 >> THANK YOU, JOSH. 2821 02:02:40,160 --> 02:02:41,160 JULIE, YOU HAVE A QUESTION AS 2822 02:02:41,160 --> 02:02:41,400 WELL. 2823 02:02:41,400 --> 02:02:43,480 >> SORRY TO PROLONG THE 2824 02:02:43,480 --> 02:02:45,240 DISCUSSION BUT JOSH YOU 2825 02:02:45,240 --> 02:02:47,760 CONVINCED ME THIS NUMBER IS AN 2826 02:02:47,760 --> 02:02:49,000 IMPORTANT THING TO THINK THROUGH 2827 02:02:49,000 --> 02:02:51,400 AND I WAS THINKING THROUGH HOW 2828 02:02:51,400 --> 02:02:53,760 DO WE JUSTIFY OPTION 2 BECAUSE I 2829 02:02:53,760 --> 02:02:56,680 THINK PROBABLY EVERYBODY ON THE 2830 02:02:56,680 --> 02:02:58,640 CALL WOULD LOVE TO SEE MORE 2831 02:02:58,640 --> 02:02:59,760 MONEY FOR AUTISM RESEARCH 2832 02:02:59,760 --> 02:03:00,520 OPPOSED TO LESS. 2833 02:03:00,520 --> 02:03:03,360 AND I DO THINK POTENTIALLY WITH 2834 02:03:03,360 --> 02:03:07,360 THIS FOCUS ON REALLY ENGAGING 2835 02:03:07,360 --> 02:03:09,040 UNDER SERVED GROUP AND GROUPS 2836 02:03:09,040 --> 02:03:13,960 UNDER REPRESENTED IN RESEARCH, 2837 02:03:13,960 --> 02:03:16,120 NA IS SOMETHING THAT BECOMES A 2838 02:03:16,120 --> 02:03:20,880 REAL FOCUS OF THIS PLAN AND 2839 02:03:20,880 --> 02:03:23,960 CROSS-CUTTING THEME MAY GIVE 2840 02:03:23,960 --> 02:03:25,280 JUSTIFICATION BECAUSE IT'S NOT 2841 02:03:25,280 --> 02:03:27,840 EASY WORK AND ALL OF US MYSELF 2842 02:03:27,840 --> 02:03:29,880 INCLUDED WOULD LOVE MY SAMPLES 2843 02:03:29,880 --> 02:03:31,360 TO BE MORE DIVERSE BUT I DON'T 2844 02:03:31,360 --> 02:03:32,240 ALWAYS FEEL LIKE I HAVE THE 2845 02:03:32,240 --> 02:03:33,960 TOOLS TO MAKE THAT HAPPEN AND 2846 02:03:33,960 --> 02:03:35,600 SOMETIMES GROUPS ARE HARD TO 2847 02:03:35,600 --> 02:03:36,920 ENGAGE TO DO THAT. 2848 02:03:36,920 --> 02:03:40,480 I THINK IF WE REALLY WANTED TO 2849 02:03:40,480 --> 02:03:42,200 SEE A SEE CHANGE IN TERMS OF 2850 02:03:42,200 --> 02:03:45,160 HAVING OUR SAMPLES BEING MORE 2851 02:03:45,160 --> 02:03:45,720 REPRESENTATIVE OF THE 2852 02:03:45,720 --> 02:03:47,320 POPULATIONS AT LARGE I THINK IT 2853 02:03:47,320 --> 02:03:49,160 WILL PROBABLY TAKE A SIGNIFICANT 2854 02:03:49,160 --> 02:03:56,560 INVESTMENT FOR THAT TO HAPPEN. 2855 02:03:56,560 --> 02:04:01,640 SO PERHAPS A FOCUS ON ENGAGING 2856 02:04:01,640 --> 02:04:05,760 THE POPULATION OF AUTISTIC 2857 02:04:05,760 --> 02:04:07,200 INDIVIDUALS AND THEIR FAMILIES 2858 02:04:07,200 --> 02:04:08,760 TO SAY IT'S REALLY IMPORTANT AND 2859 02:04:08,760 --> 02:04:10,360 WE'LL NEED ADDITIONAL FUNDING TO 2860 02:04:10,360 --> 02:04:16,560 MAKE THIS HAPPEN. 2861 02:04:16,560 --> 02:04:20,160 >> JULIE, I LIKE THE FORMATION 2862 02:04:20,160 --> 02:04:21,480 OF IDENTIFYING SPECIFIC AREAS WE 2863 02:04:21,480 --> 02:04:25,880 WANT TO EXPAND BY INCREASING 2864 02:04:25,880 --> 02:04:26,520 RESOURCES AVAILABLE INCLUDING 2865 02:04:26,520 --> 02:04:28,960 REACHING UNDER SERVED 2866 02:04:28,960 --> 02:04:30,960 POPULATIONS AND THE REFERENCE TO 2867 02:04:30,960 --> 02:04:32,280 OTHER POPULATIONS AND INCREASING 2868 02:04:32,280 --> 02:04:36,120 THE AMOUNT OF RESEARCH IN ADULTS 2869 02:04:36,120 --> 02:04:37,680 WITH AUTISM SO IDENTIFY THAT 2870 02:04:37,680 --> 02:04:42,920 WOULD BE A PRODUBLTH -- 2871 02:04:42,920 --> 02:04:44,480 PRODUCTIVE AREA AND USING THAT 2872 02:04:44,480 --> 02:04:45,960 TO JUSTIFY A BUDGET AND 2873 02:04:45,960 --> 02:04:46,600 RECOMMENDATION FOR BUDGET 2874 02:04:46,600 --> 02:04:46,880 INCREASE. 2875 02:04:46,880 --> 02:04:50,160 SORRY TO INTERRUPT. 2876 02:04:50,160 --> 02:04:52,480 >> JUST AS A REMINDER TOO THAT 2877 02:04:52,480 --> 02:04:54,320 WHEN WE ARE MAKING THIS BUDGET 2878 02:04:54,320 --> 02:04:56,160 RECOMMENDATION THIS COMMITTEE IS 2879 02:04:56,160 --> 02:04:59,760 AUTHORIZED TO BE ABLE TO MAKE 2880 02:04:59,760 --> 02:05:00,960 RECOMMENDATIONS REGARDING AUTISM 2881 02:05:00,960 --> 02:05:02,760 BUT WANTED YOU TO KEEP IN MIND 2882 02:05:02,760 --> 02:05:04,640 THERE'S AN ENTIRE BODY OF WORK 2883 02:05:04,640 --> 02:05:05,760 BEING DONE ON ALL DISABILITIES 2884 02:05:05,760 --> 02:05:08,680 AND MANY AGENCIES THAT FOCUS ON 2885 02:05:08,680 --> 02:05:14,080 DISABILITIES AS A WHOLE AND 2886 02:05:14,080 --> 02:05:15,200 DON'T NECESSARILY SPECIFY VERY 2887 02:05:15,200 --> 02:05:16,320 MANY THINGS SPECIFICALLY FOR 2888 02:05:16,320 --> 02:05:16,560 AUTISM. 2889 02:05:16,560 --> 02:05:18,120 THERE IS OTHER FUNDING THAT IS 2890 02:05:18,120 --> 02:05:20,840 ALSO BEING SPENT ON THINGS THAT 2891 02:05:20,840 --> 02:05:23,280 WOULD BE USEFUL TO THE AUTISM 2892 02:05:23,280 --> 02:05:25,120 COMMUNITY BUT THE BUDGET 2893 02:05:25,120 --> 02:05:25,640 RECOMMENDATION THAT THE 2894 02:05:25,640 --> 02:05:27,800 COMMITTEE IS AUTHORIZED TO MAKE 2895 02:05:27,800 --> 02:05:29,120 WOULD HAVE TO DO WITH AUTISM 2896 02:05:29,120 --> 02:05:30,200 SPENDING SPECIFICALLY. 2897 02:05:30,200 --> 02:05:31,680 SO KEEP IN MIND THAT IT'S NOT 2898 02:05:31,680 --> 02:05:34,880 LIKE THIS IS THE ONLY RESEARCH 2899 02:05:34,880 --> 02:05:37,480 MONEY THAT BENEFITS AUTISM. 2900 02:05:37,480 --> 02:05:40,640 THERE'S ALSO RESEARCH MONEY 2901 02:05:40,640 --> 02:05:42,880 BEING SPENT MORE BROADLY THAT'S 2902 02:05:42,880 --> 02:05:43,160 BENEFICIAL. 2903 02:05:43,160 --> 02:05:47,960 SUSAN, DO YOU HAVE A QUESTION? 2904 02:05:47,960 --> 02:05:49,280 >> A COMMENT. 2905 02:05:49,280 --> 02:05:51,960 I WANTED TO SAY I APPRECIATE AND 2906 02:05:51,960 --> 02:05:52,760 WE BENEFIT FROM THE COMMENTS WE 2907 02:05:52,760 --> 02:05:55,800 HEARD. 2908 02:05:55,800 --> 02:05:57,360 AFTER THE POLL WAS LAUNCHED. 2909 02:05:57,360 --> 02:05:58,680 I WAS PERSONALLY VERY SURPRISED 2910 02:05:58,680 --> 02:06:04,480 TO SEE THE RESULTS OF THE POLL. 2911 02:06:04,480 --> 02:06:06,360 I WONDER IF WE COULD HAVE 2912 02:06:06,360 --> 02:06:08,040 COMMENTS AND DISCUSSION BEFORE 2913 02:06:08,040 --> 02:06:10,720 THE POLLS LAUNCH THAT WAY WE CAN 2914 02:06:10,720 --> 02:06:13,560 GO INTO THOSE ANSWERS WITH MORE 2915 02:06:13,560 --> 02:06:14,840 INFORMED OPINIONS. 2916 02:06:14,840 --> 02:06:17,120 PERSONALLY, I WAS ALSO VERY 2917 02:06:17,120 --> 02:06:21,160 SURPRISED BY THE OVERWHELMING 2918 02:06:21,160 --> 02:06:28,560 75% TO 25% ON ADDING COVID-19 AS 2919 02:06:28,560 --> 02:06:29,800 A SEPARATE SECTION OF THE REPORT 2920 02:06:29,800 --> 02:06:31,560 WHICH I PERSONALLY DISAGREE WITH 2921 02:06:31,560 --> 02:06:33,240 BUT WONDER IF WE CAN BENEFIT 2922 02:06:33,240 --> 02:06:35,400 FROM TALKING TO ONE ANOTHER 2923 02:06:35,400 --> 02:06:37,640 ABOUT THAT BEFORE WE HAVE THE 2924 02:06:37,640 --> 02:06:38,200 OPPORTUNITY TO VOTE. 2925 02:06:38,200 --> 02:06:38,920 >> SURE. 2926 02:06:38,920 --> 02:06:41,720 AND I'M GOING TO ASK TO RERUN 2927 02:06:41,720 --> 02:06:44,400 THE POLL BECAUSE WE HAVE HAD A 2928 02:06:44,400 --> 02:06:44,920 SIGNIFICANT DISCUSSION. 2929 02:06:44,920 --> 02:06:48,440 THIS IS THE FIRST TIME WE'RE 2930 02:06:48,440 --> 02:06:53,560 USING POLLING IN THE MEETINGS 2931 02:06:53,560 --> 02:06:54,600 HERE SO IT'S AN EXPERIMENT. 2932 02:06:54,600 --> 02:06:57,240 >> AND I THINK IT'S A GREAT IDEA 2933 02:06:57,240 --> 02:06:58,920 AND WE'RE LEARNING AS WE GO BUT 2934 02:06:58,920 --> 02:07:00,520 I'D LIKE TO REQUEST THAT. 2935 02:07:00,520 --> 02:07:05,080 >> NO, I WAS PLANNING TO DID 2936 02:07:05,080 --> 02:07:10,080 THAT AGAIN AND JALEN, I HAD 2937 02:07:10,080 --> 02:07:10,600 ANOTHER COMMENT. 2938 02:07:10,600 --> 02:07:11,320 IT'S DOWN. 2939 02:07:11,320 --> 02:07:12,560 THE POLL IS PUT UP AGAIN. 2940 02:07:12,560 --> 02:07:14,680 IF YOU CAN GO AHEAD AND RESPOND 2941 02:07:14,680 --> 02:07:17,800 TO THAT THEN WE WILL SEE WHERE 2942 02:07:17,800 --> 02:07:25,760 WE LIE. 2943 02:07:25,760 --> 02:07:28,920 >> THE POLL RESULTS ARE IN AND 2944 02:07:28,920 --> 02:07:32,160 HOW SHOULD IT BE UPDATED IN THE 2945 02:07:32,160 --> 02:07:32,880 UPCOMING STRATEGIC PLAN. 2946 02:07:32,880 --> 02:07:35,720 OPTION 1 WAS TO EXTEND THE TIME 2947 02:07:35,720 --> 02:07:39,280 LINE BY FIVE YEARS TO REACH $685 2948 02:07:39,280 --> 02:07:41,840 MILLION BY 2025 AND OPTION 2949 02:07:41,840 --> 02:07:43,960 NUMBER 2 WAS RECOMMENDING 2950 02:07:43,960 --> 02:07:44,840 DOUBLING THE RESEARCH AMOUNT 2951 02:07:44,840 --> 02:07:51,480 FROM 2020 WHICH IS AROUND $430 2952 02:07:51,480 --> 02:07:56,280 TO $860 MILLION AND OPTION 3 WAS 2953 02:07:56,280 --> 02:07:57,680 NEITHER ONE OR TWO OR SOMETHING 2954 02:07:57,680 --> 02:07:59,080 ELSE AND 65% SAYING THEY'D LIKE 2955 02:07:59,080 --> 02:08:01,880 TO EXTEND THE TIME LINE SO 2956 02:08:01,880 --> 02:08:04,160 OPTION 1 AND 40% OPTION 2. 2957 02:08:04,160 --> 02:08:08,160 SO THAT'S A CLEAR MAJORITY SO WE 2958 02:08:08,160 --> 02:08:10,560 WILL WORK WITH THAT IN THE DRAFT 2959 02:08:10,560 --> 02:08:11,640 OF THE PLAN AND BRING IT BACK TO 2960 02:08:11,640 --> 02:08:13,880 THE COMMITTEE TO LOOK AT IT ONCE 2961 02:08:13,880 --> 02:08:15,600 WE'VE DRAFTED IT BUT THERE'S A 2962 02:08:15,600 --> 02:08:18,840 PART 2 TO THIS SO WHAT WE TALKED 2963 02:08:18,840 --> 02:08:21,800 ABOUT A COUPLE MINUTES AGO ABOUT 2964 02:08:21,800 --> 02:08:23,560 THINKING ABOUT WHAT AREAS WE 2965 02:08:23,560 --> 02:08:25,960 MIGHT WANT TO THINK ABOUT IN 2966 02:08:25,960 --> 02:08:28,240 TERMS OF WHAT WE WOULD DO IF 2967 02:08:28,240 --> 02:08:29,760 THERE'S A BUDGET RECOMMENDATION 2968 02:08:29,760 --> 02:08:30,640 IS THERE ANYTHING THAT UNDER 2969 02:08:30,640 --> 02:08:35,160 LIES THIS AND LAST TIME THE 2970 02:08:35,160 --> 02:08:36,760 COMMITTEE IDENTIFIED THREE AREAS 2971 02:08:36,760 --> 02:08:39,760 THAT THEY FELT WERE PRIORITIES 2972 02:08:39,760 --> 02:08:41,840 FOR INTENSIFIED RESEARCH EFFORTS 2973 02:08:41,840 --> 02:08:43,320 AND THE THREE AREAS THEY 2974 02:08:43,320 --> 02:08:46,800 IDENTIFIED WERE TREATMENTS AND 2975 02:08:46,800 --> 02:08:47,440 INTERVENTIONS, EVIDENCE-BASED 2976 02:08:47,440 --> 02:08:50,360 SERVICES AND LIFE SPANISH USE. 2977 02:08:50,360 --> 02:08:55,920 -- LIFE SPAN ISSUES. 2978 02:08:55,920 --> 02:08:57,160 SO THE WAY I'VE SET UP THE POLL 2979 02:08:57,160 --> 02:08:59,160 IS JUST FOR YOU TO FIRST LOOK AT 2980 02:08:59,160 --> 02:08:59,360 THIS. 2981 02:08:59,360 --> 02:09:00,880 THERE'S ANOTHER SLIDE AFTER THIS 2982 02:09:00,880 --> 02:09:05,120 THAT HAS ANOTHER POLL BUT TO SEE 2983 02:09:05,120 --> 02:09:07,360 IF YOU STILL FEEL THESE THREE 2984 02:09:07,360 --> 02:09:09,240 AREAS ARE TOP AREAS YOU WOULD 2985 02:09:09,240 --> 02:09:10,360 WANT TO CONSIDER AND JUST KEEP 2986 02:09:10,360 --> 02:09:14,040 IN MIND OF COURSE WE DON'T WANT 2987 02:09:14,040 --> 02:09:16,160 TO HAVE 25 DIFFERENT AREAS TO 2988 02:09:16,160 --> 02:09:16,400 HIGHLIGHT. 2989 02:09:16,400 --> 02:09:18,920 WE WANT TO KEEP IT SMALL AND 2990 02:09:18,920 --> 02:09:20,000 FOCUSSED SO WHEN CONGRESS SEES 2991 02:09:20,000 --> 02:09:22,280 IT THEY SEE WE HAVE A DIRECTION 2992 02:09:22,280 --> 02:09:23,640 AND I KNOW IT IS CHALLENGING 2993 02:09:23,640 --> 02:09:25,560 BECAUSE IT'S A DIVERSE COMMITTEE 2994 02:09:25,560 --> 02:09:30,120 WITH A LOT OF DIFFERENT OPINIONS 2995 02:09:30,120 --> 02:09:33,200 AND THOUGHTS BUT SHOULD WE HAVE 2996 02:09:33,200 --> 02:09:35,920 A DISCUSSION BEFORE THE POLL? 2997 02:09:35,920 --> 02:09:37,200 >> I'M WONDERING IF WE NEED TO 2998 02:09:37,200 --> 02:09:38,000 DO THIS NOW. 2999 02:09:38,000 --> 02:09:39,040 WE HAVE A FEW MINUTES LEFT 3000 02:09:39,040 --> 02:09:40,160 BEFORE WE HAVE TO BREAK AND 3001 02:09:40,160 --> 02:09:42,760 THERE WAS A DESIRE TO HAVE 3002 02:09:42,760 --> 02:09:43,480 DISCUSSION INCLUDING SOME OTHER 3003 02:09:43,480 --> 02:09:44,440 AREAS NOMINATED. 3004 02:09:44,440 --> 02:09:46,560 CAN WE AFFORD TO WAIT UNTIL THE 3005 02:09:46,560 --> 02:09:50,000 NEXT MEETING TO DISCUSS THE 3006 02:09:50,000 --> 02:09:52,520 AREAS THAT WE RECOMMEND 3007 02:09:52,520 --> 02:09:52,960 INCREASING OR -- 3008 02:09:52,960 --> 02:09:54,400 >> ARE YOU TALKING ABOUT THE 3009 02:09:54,400 --> 02:09:56,080 SUMMARY OF ADVANCES? 3010 02:09:56,080 --> 02:10:06,160 >> NO, NO, NO. 3011 02:10:06,160 --> 02:10:07,560 I'M TALKING ABOUT THE BUDGET 3012 02:10:07,560 --> 02:10:12,520 AREAS AND I'VE HEARD 3013 02:10:12,520 --> 02:10:14,040 COMMUNICATIONS AND IN ADDITION 3014 02:10:14,040 --> 02:10:17,120 TO THE LIFE SPAN THE OTHER 3015 02:10:17,120 --> 02:10:19,320 ISSUES AND REACHING DIVERSE 3016 02:10:19,320 --> 02:10:20,600 POPULATIONS AND WONDERING IF 3017 02:10:20,600 --> 02:10:23,280 THAT WOULD BENEFIT FROM A LONGER 3018 02:10:23,280 --> 02:10:24,760 DISCUSSION THAN WE CAN HAVE IN 3019 02:10:24,760 --> 02:10:26,680 THREE MINUTES SO CAN WE COME 3020 02:10:26,680 --> 02:10:29,800 BACK TO THAT IN THE APRIL 3021 02:10:29,800 --> 02:10:30,040 MEETING? 3022 02:10:30,040 --> 02:10:31,160 >> I THINK WE CAN. 3023 02:10:31,160 --> 02:10:32,840 WE CAN WORK WITH THE INITIAL 3024 02:10:32,840 --> 02:10:34,640 BUDGET RECOMMENDATIONS. 3025 02:10:34,640 --> 02:10:36,200 YOU'LL SEE MY NEXT SLIDE AND 3026 02:10:36,200 --> 02:10:38,200 POLL IS WHETHER SERVICES ON 3027 02:10:38,200 --> 02:10:39,440 DISPARITIES IN UNDER SERVED 3028 02:10:39,440 --> 02:10:41,040 COMMUNITIES SHOULD BE ADDED AS A 3029 02:10:41,040 --> 02:10:47,120 PRIORITY AREA BUT THERE MAY BE 3030 02:10:47,120 --> 02:10:48,720 OTHER ONES. 3031 02:10:48,720 --> 02:10:50,000 WE CAN WITH THE COMMITTEE GIVING 3032 02:10:50,000 --> 02:10:52,000 US FEEDBACK ON THE PLAN IF YOU 3033 02:10:52,000 --> 02:10:53,280 HAVE THOUGHTS ON PRIORITY AREAS 3034 02:10:53,280 --> 02:10:54,840 TO CONSIDER WE CAN SEND THEM IN 3035 02:10:54,840 --> 02:11:00,760 AND USE THEM IN A POLL AT THE 3036 02:11:00,760 --> 02:11:11,640 APRIL MEETING. 3037 02:11:11,640 --> 02:11:17,600 SO TOO WE'RE -- SO IF WE'RE 3038 02:11:17,600 --> 02:11:18,760 GOING TABLE THAT THERE'S A 3039 02:11:18,760 --> 02:11:23,160 COUPLE HANDS RAISED. 3040 02:11:23,160 --> 02:11:24,760 WE'RE SKIPPING THESE POLLS AND 3041 02:11:24,760 --> 02:11:26,720 MOVING ON BUT YETA, DID YOU HAVE 3042 02:11:26,720 --> 02:11:27,160 A COMMENT? 3043 02:11:27,160 --> 02:11:31,000 >> YES, GOOD AFTERNOON, EVERYONE 3044 02:11:31,000 --> 02:11:36,080 ON THE EAST COAST. 3045 02:11:36,080 --> 02:11:37,400 I'M THINKING WHEN YOU PRESENT 3046 02:11:37,400 --> 02:11:39,960 THE PRIORITY AREAS IT WOULD BE 3047 02:11:39,960 --> 02:11:41,360 GREAT IF WE CAN SEE A LIST SIDE 3048 02:11:41,360 --> 02:11:42,640 BY SIDE BECAUSE IT'S DIFFICULT 3049 02:11:42,640 --> 02:11:48,320 FOR ME, PERSONALLY, TO OKAY WHAT 3050 02:11:48,320 --> 02:11:51,280 ARE ALL THE AREAS THAT WE TALKED 3051 02:11:51,280 --> 02:11:56,960 ABOUT AND SEEING THE PROPOSED 3052 02:11:56,960 --> 02:11:57,160 LIST. 3053 02:11:57,160 --> 02:11:59,400 THAT WOULD MAKE IT EASIER TO 3054 02:11:59,400 --> 02:12:00,760 MAKE A DETERMINATION. 3055 02:12:00,760 --> 02:12:02,000 >> THAT'S A GREAT SUGGESTION. 3056 02:12:02,000 --> 02:12:03,360 WE CAN LIES DO THAT. 3057 02:12:03,360 --> 02:12:07,040 THERE'S A WAY TO DO THAT. 3058 02:12:07,040 --> 02:12:09,240 THANK YOU. 3059 02:12:09,240 --> 02:12:10,680 DINA. 3060 02:12:10,680 --> 02:12:12,400 >> SIMILARLY, IF WE CAN DEFINE 3061 02:12:12,400 --> 02:12:14,480 HOW WE PREVIOUSLY REFERENCE THE 3062 02:12:14,480 --> 02:12:21,800 CATEGORIES AND THE DE 3063 02:12:21,800 --> 02:12:24,360 DEFINITIONS AND SEVERAL US 3064 02:12:24,360 --> 02:12:26,840 ARRIVED LATE FOR THE MEETING 3065 02:12:26,840 --> 02:12:27,880 BECAUSE WE DIDN'T REGISTER THE 3066 02:12:27,880 --> 02:12:29,560 SHIFT IN THE TIME AND MISSED THE 3067 02:12:29,560 --> 02:12:31,560 OPPORTUNITY TO PARTICIPATE IN 3068 02:12:31,560 --> 02:12:33,840 THE SSA DISCUSSION AND FROM WHAT 3069 02:12:33,840 --> 02:12:35,240 I UNDERSTAND WE WERE NOT ABLE TO 3070 02:12:35,240 --> 02:12:36,400 ASK A LOT OF QUESTIONS. 3071 02:12:36,400 --> 02:12:39,360 PEOPLE WERE LEFT WITH A LOT OF 3072 02:12:39,360 --> 02:12:40,320 QUESTIONS. 3073 02:12:40,320 --> 02:12:41,840 I WANTED TO ASK IF WE COULD 3074 02:12:41,840 --> 02:12:44,040 INVITE THAT INDIVIDUAL TO COME 3075 02:12:44,040 --> 02:12:46,320 BACK SO WE HAVE OPPORTUNITIES TO 3076 02:12:46,320 --> 02:12:49,040 ASK THOSE QUESTIONS MAYBE IN THE 3077 02:12:49,040 --> 02:12:52,320 APRIL MEETING BECAUSE FRANKLY, I 3078 02:12:52,320 --> 02:12:57,440 PREPARED A LOT OF QUESTIONS 3079 02:12:57,440 --> 02:12:59,560 BECAUSE MY DISSERTATION IS ON 3080 02:12:59,560 --> 02:12:59,720 SSA. 3081 02:12:59,720 --> 02:13:02,160 I WOULD LIKE TO POSE QUESTIONS 3082 02:13:02,160 --> 02:13:03,400 AND I THINK OTHER PEOPLE HAVE 3083 02:13:03,400 --> 02:13:05,600 QUESTIONS OR COMMENTS WE DIDN'T 3084 02:13:05,600 --> 02:13:06,520 HAVE TIME FOR. 3085 02:13:06,520 --> 02:13:08,000 I WANTED TO MAKE A PITCH THERE. 3086 02:13:08,000 --> 02:13:13,480 THANK YOU. 3087 02:13:13,480 --> 02:13:14,480 >> WE HAVE A FULL AGENDA ALREADY 3088 02:13:14,480 --> 02:13:15,160 FOR APRIL. 3089 02:13:15,160 --> 02:13:20,320 WE HAVE A NUMBER OF THINGS. 3090 02:13:20,320 --> 02:13:23,000 I'M NOT SURE IF WE CAN REINVITE 3091 02:13:23,000 --> 02:13:25,160 THE SAME SPEAKER AGAIN. 3092 02:13:25,160 --> 02:13:26,160 >> I THINK WE'LL TAKE THAT 3093 02:13:26,160 --> 02:13:27,960 SUGGESTION TO HEART. 3094 02:13:27,960 --> 02:13:30,920 I WAS DISAPPOINTED AT THE 3095 02:13:30,920 --> 02:13:31,960 RELATIVE SMALL AMOUNT OF TIME 3096 02:13:31,960 --> 02:13:33,800 THE SPEAKER LEFT FOR US TO ASK 3097 02:13:33,800 --> 02:13:35,120 QUESTIONS AND MAKE COMMENTS BUT 3098 02:13:35,120 --> 02:13:36,960 I THINK WE WANT TO MAKE SURE THE 3099 02:13:36,960 --> 02:13:38,680 COMMENTS AND QUESTIONS WE MAKE 3100 02:13:38,680 --> 02:13:40,240 WILL BE PITCHED TOWARDS THE 3101 02:13:40,240 --> 02:13:42,360 NEEDS OF THE GENERAL AUDIENCE 3102 02:13:42,360 --> 02:13:43,880 THAT'S LISTENING IF WE'RE GOING 3103 02:13:43,880 --> 02:13:45,720 TO GO THROUGH THAT. 3104 02:13:45,720 --> 02:13:52,320 SO LET'S CONFER AND DINA IF YOU 3105 02:13:52,320 --> 02:13:53,640 WOULDN'T MIND E-MAILING WHAT 3106 02:13:53,640 --> 02:13:55,240 YOUR QUESTIONS WERE AND MAYBE WE 3107 02:13:55,240 --> 02:13:58,480 CAN TAILOR A SESSION AROUND 3108 02:13:58,480 --> 02:14:00,080 THOSE NEEDS AND IF OTHERS DIDN'T 3109 02:14:00,080 --> 02:14:01,400 GET AN OPPORTUNITY TO ASK 3110 02:14:01,400 --> 02:14:04,200 QUESTIONS YOU CAN SEND THEM TO 3111 02:14:04,200 --> 02:14:05,560 ME AND WE'LL REPORT BACK AND 3112 02:14:05,560 --> 02:14:07,680 WHEN WE CAN SCHEDULE IT. 3113 02:14:07,680 --> 02:14:08,000 >> THANK YOU. 3114 02:14:08,000 --> 02:14:10,800 I THINK WE NEED TO MOVE ON BUT I 3115 02:14:10,800 --> 02:14:11,760 SEE ALLISON, YOU'VE BEEN WANTING 3116 02:14:11,760 --> 02:14:14,000 TO MAKE A COMMENT, GO AHEAD AND 3117 02:14:14,000 --> 02:14:17,760 THEN WE SHOULD BREAK FOR LUNCH. 3118 02:14:17,760 --> 02:14:20,320 >> I DON'T WANT TO INTERRUPT THE 3119 02:14:20,320 --> 02:14:21,920 LUNCH SCHEDULE BUT ONE OPTION 3120 02:14:21,920 --> 02:14:24,280 WHICH JEFF AND I HAVE BEEN 3121 02:14:24,280 --> 02:14:26,880 DISCUSSING BECAUSE WE WANTED TO 3122 02:14:26,880 --> 02:14:29,680 CATCH THOSE QUESTIONS HE WASN'T 3123 02:14:29,680 --> 02:14:31,800 ABLE TO RESPOND AND I KNOW THREE 3124 02:14:31,800 --> 02:14:33,400 PEOPLE RAISED HANDS AND ALREADY 3125 02:14:33,400 --> 02:14:35,920 SENT SUSAN A NOTE TO GET 3126 02:14:35,920 --> 02:14:38,440 INFORMATION AND QUESTIONS IN 3127 02:14:38,440 --> 02:14:40,800 WRITING SO I WOULD IMAGINE THAT 3128 02:14:40,800 --> 02:14:42,960 TO SUSAN SO MAYBE IF YOU COULD 3129 02:14:42,960 --> 02:14:46,880 SEND THOSE QUESTIONS UP TO SUSAN 3130 02:14:46,880 --> 02:14:51,280 AND HER TEAM, MAYBE WE CAN DRAFT 3131 02:14:51,280 --> 02:14:53,160 SOMETHING TO SEND THAT OUT SO 3132 02:14:53,160 --> 02:14:54,400 PEOPLE CAN GET THEIR RESPONSE 3133 02:14:54,400 --> 02:14:55,280 SOONER THAN LATER. 3134 02:14:55,280 --> 02:14:56,760 >> THAT'S NOT A BAD IDEA. 3135 02:14:56,760 --> 02:14:58,280 WE HAVE TO FIGURE OUT A WAY TO 3136 02:14:58,280 --> 02:15:00,360 MAKE SURE IT REACHES THE 3137 02:15:00,360 --> 02:15:00,960 AUDIENCE. 3138 02:15:00,960 --> 02:15:02,800 THIS COMMITTEE NOT ABOUT 3139 02:15:02,800 --> 02:15:04,120 ANSWERING THE INDIVIDUAL 3140 02:15:04,120 --> 02:15:05,280 MEMBER'S OF THE COMMITTEE'S 3141 02:15:05,280 --> 02:15:06,520 QUESTIONS AND CONCERNS BUT 3142 02:15:06,520 --> 02:15:09,560 PROVIDING AN OPPORTUNITY TO ASK 3143 02:15:09,560 --> 02:15:10,960 QUESTIONS OF BROAD INTEREST TO 3144 02:15:10,960 --> 02:15:12,320 THE AUTISM COMMUNITY AT LARGE 3145 02:15:12,320 --> 02:15:14,360 AND ALLOW THOSE INDIVIDUAL TO 3146 02:15:14,360 --> 02:15:15,960 HEAR THOSE ANSWER. 3147 02:15:15,960 --> 02:15:17,760 PERHAPS WE CAN BROKER A DOCUMENT 3148 02:15:17,760 --> 02:15:21,600 MAYBE A Q&A DOCUMENT TO PUT ON 3149 02:15:21,600 --> 02:15:23,760 THE WEBSITE ETCETERA. 3150 02:15:23,760 --> 02:15:25,960 SUSAN, I'LL LEAVE THAT TO YOU 3151 02:15:25,960 --> 02:15:27,320 AND ALISON TO FIGURE OUT HOW TO 3152 02:15:27,320 --> 02:15:31,760 DO AND THEN WE'LL SOLICIT 3153 02:15:31,760 --> 02:15:32,720 QUESTIONS AND COMMENTS FROM THE 3154 02:15:32,720 --> 02:15:33,960 COMMITTEE AND FIGURE OUT WHETHER 3155 02:15:33,960 --> 02:15:37,000 WE CAN'T GET A DOCUMENT ON THE 3156 02:15:37,000 --> 02:15:39,680 WEBSITE FOR THE PUBLIC AND/OR 3157 02:15:39,680 --> 02:15:41,240 REPEAT THE SESSION AT A FUTURE 3158 02:15:41,240 --> 02:15:41,480 MEETING. 3159 02:15:41,480 --> 02:15:43,760 I WANT TO THANK EVERYONE FOR 3160 02:15:43,760 --> 02:15:44,920 THEIR TREMENDOUS ACTIVITY. 3161 02:15:44,920 --> 02:15:46,960 I KNOW SUSAN APPRECIATES ALL THE 3162 02:15:46,960 --> 02:15:48,040 COMMENTS WE HEARD. 3163 02:15:48,040 --> 02:15:50,600 WE MADE SOME PROGRESS ON THE 3164 02:15:50,600 --> 02:15:51,600 STRATEGIC PLAN PROCESS INCLUDING 3165 02:15:51,600 --> 02:15:53,760 THE BUDGET AND WE'LL MAKE MORE 3166 02:15:53,760 --> 02:15:56,240 PROGRESS AFTER THE NEXT MEETING. 3167 02:15:56,240 --> 02:15:59,120 I'M PLEASED AT THE ACTIVE NATURE 3168 02:15:59,120 --> 02:16:02,960 OF THIS GROUP TODAY AND I ALSO 3169 02:16:02,960 --> 02:16:04,360 AM PLEASED PEOPLE HAVE BEEN 3170 02:16:04,360 --> 02:16:06,280 FEELING COMFORTABLE VOICING 3171 02:16:06,280 --> 02:16:07,880 THEIR OPINIONS EVEN WHEN THEY'RE 3172 02:16:07,880 --> 02:16:09,960 NOT PREVIOUSLY AGREEING WITH THE 3173 02:16:09,960 --> 02:16:12,160 PREVIOUS SPEAKER AND A WANT TO 3174 02:16:12,160 --> 02:16:12,800 ENCOURAGE THAT. 3175 02:16:12,800 --> 02:16:13,840 EVERYONE IS BEING INCREDIBLY 3176 02:16:13,840 --> 02:16:15,800 RESPECTFUL AND I APPRECIATE 3177 02:16:15,800 --> 02:16:16,000 THAT. 3178 02:16:16,000 --> 02:16:18,080 WE DO NEED TO TAKE A BREAK FOR 3179 02:16:18,080 --> 02:16:20,000 OUR OWN MENTAL AND PHYSICAL 3180 02:16:20,000 --> 02:16:20,240 HEALTH. 3181 02:16:20,240 --> 02:16:25,360 WE CAN'T BE ON ZOOM FROM 10:00 3182 02:16:25,360 --> 02:16:30,760 A.M. TO 5:00 P.M. SO WE'LL BE 3183 02:16:30,760 --> 02:16:32,880 BACK AT 1:00. 3184 02:16:32,880 --> 02:16:34,280 >> BACK AT 1:00 WHEN WE'LL 3185 02:16:34,280 --> 02:16:35,840 COMMENCE WITH THE PUBLIC 3186 02:16:35,840 --> 02:16:36,120 COMMENT. 3187 02:16:36,120 --> 02:16:37,120 PLEASE COME BACK ON TIME. 3188 02:16:37,120 --> 02:16:40,880 WE WANT TO HEAR FROM ALL THE 3189 02:16:40,880 --> 02:16:42,520 COMMENTERS AND HEAR ABOUT THE 3190 02:16:42,520 --> 02:16:43,120 WRITTEN COMMENT. 3191 02:16:43,120 --> 02:16:59,320 SEE YOU ALL AT 1:00. 3192 02:16:59,320 --> 02:17:01,480 >> WELCOME BACK, EVERYONE. 3193 02:17:01,480 --> 02:17:02,600 IT'S 1:00. 3194 02:17:02,600 --> 02:17:04,920 I'M GOING TURN IT BACK TO SUSAN 3195 02:17:04,920 --> 02:17:10,680 WHO IS GOING TO BE OTHER 3196 02:17:10,680 --> 02:17:12,520 STRAIG -- 3197 02:17:12,520 --> 02:17:13,720 ORCHESTRATING THE PUBLIC COMMENT 3198 02:17:13,720 --> 02:17:14,120 SESSION. 3199 02:17:14,120 --> 02:17:15,240 >> THANK YOU, JOSH. 3200 02:17:15,240 --> 02:17:16,960 I'D LIKE TO TAKE A FEW MOMENTS 3201 02:17:16,960 --> 02:17:18,520 BEFORE WE START THE PUBLIC 3202 02:17:18,520 --> 02:17:20,120 COMMENT SESSION THIS AFTERNOON 3203 02:17:20,120 --> 02:17:22,360 TO GIVE AN OPPORTUNITY TO 3204 02:17:22,360 --> 02:17:23,600 DRDR. 3205 02:17:23,600 --> 02:17:30,200 DR. ANITA EVERETT TO INTRODUCE 3206 02:17:30,200 --> 02:17:34,760 HERSELF FROM THE SUBSTANCE ABUSE 3207 02:17:34,760 --> 02:17:36,480 AGENCY. 3208 02:17:36,480 --> 02:17:38,480 COME TO THE SCREEN ANITA AND 3209 02:17:38,480 --> 02:17:40,400 INTRODUCE YOURSELF. 3210 02:17:40,400 --> 02:17:46,400 >> CAN YOU HEAR IS THE 3211 02:17:46,400 --> 02:18:03,280 >> WORK AT THE SAMHSA AT THE 3212 02:18:03,280 --> 02:18:06,320 FAMILY OF AGENCIES. 3213 02:18:06,320 --> 02:18:07,720 PRIOR TO MY PERSONAL TIME AT IN 3214 02:18:07,720 --> 02:18:09,000 THE FEDERAL GOVERNMENT I WORKED 3215 02:18:09,000 --> 02:18:10,200 IN BALTIMORE AT JOHNS HOPKINS 3216 02:18:10,200 --> 02:18:13,960 WHERE I WAS A DIVISION DIRECTOR 3217 02:18:13,960 --> 02:18:20,520 OF COMMUNITY PROGRAM AND HAD A 3218 02:18:20,520 --> 02:18:21,880 DEDICATED CLINIC FOR ADULTS WHO 3219 02:18:21,880 --> 02:18:26,320 AGED OUT OF SERVICES. 3220 02:18:26,320 --> 02:18:27,760 I'M FAMILIAR WITH THE POPULATION 3221 02:18:27,760 --> 02:18:29,640 THROUGH A CLINICAL LENS AND 3222 02:18:29,640 --> 02:18:31,320 INTERESTED IN SUPPORTING WHAT WE 3223 02:18:31,320 --> 02:18:38,640 CAN TO ASSURE SERVICES OF GOOD 3224 02:18:38,640 --> 02:18:44,720 CAUGHT -- GOOD QUALITY AND THE 3225 02:18:44,720 --> 02:18:45,640 RESEARCH SO WE GET BETTER 3226 02:18:45,640 --> 02:18:47,160 ANSWERS TO THE QUESTIONS OUT 3227 02:18:47,160 --> 02:18:50,040 THERE WITH REGARDS TO WORKING 3228 02:18:50,040 --> 02:18:52,400 WITH THE POPULATION THAT HAS 3229 02:18:52,400 --> 02:18:53,120 AUTISM. 3230 02:18:53,120 --> 02:18:55,800 I'M ALSO WANTED TO CALL 3231 02:18:55,800 --> 02:18:57,400 ATTENTION TO A REPRESENTATIVE 3232 02:18:57,400 --> 02:18:59,880 FROM SAMHSA THAT WORKS WITH ME 3233 02:18:59,880 --> 02:19:01,080 SO WHEN I'M NOT ABLE TO ATTEND 3234 02:19:01,080 --> 02:19:14,600 THEY ARE THERE. 3235 02:19:14,600 --> 02:19:16,440 I'M INTERESTED IN PARTICIPATING 3236 02:19:16,440 --> 02:19:17,960 OVER THE NEXT YEAR. 3237 02:19:17,960 --> 02:19:19,120 >> GLAD TO HAVE YOU WITH US. 3238 02:19:19,120 --> 02:19:21,120 NOW WE'LL GO ON TO THE PUBLIC 3239 02:19:21,120 --> 02:19:23,800 COMMENT SESSION. 3240 02:19:23,800 --> 02:19:25,520 WE'LL HEAR FROM FIVE ORAL PUBLIC 3241 02:19:25,520 --> 02:19:26,400 COMMENTERS AND WILL TALK ABOUT 3242 02:19:26,400 --> 02:19:28,360 THE WRITTEN COMMENTS AND THEN 3243 02:19:28,360 --> 02:19:29,520 HAVE TIME FOR DISCUSSION. 3244 02:19:29,520 --> 02:19:34,680 SO WITH OUR ORAL COMMENTERS, 3245 02:19:34,680 --> 02:19:36,560 I'LL CALL ON YOUR NAME AND IF 3246 02:19:36,560 --> 02:19:43,920 YOU CAN TURN ON YOUR CAMERA AND 3247 02:19:43,920 --> 02:19:45,160 WE HAVE THE FULL TEXT OF THE 3248 02:19:45,160 --> 02:19:46,880 COMMENTS ON THE WEBSITE IF YOU 3249 02:19:46,880 --> 02:19:48,880 GO TO THE MEETING MATERIALS 3250 02:19:48,880 --> 02:19:50,320 YOU'LL SEE THE PUBLIC COMMENTS 3251 02:19:50,320 --> 02:19:52,880 PACKET AND CAN USE THE INDEX IN 3252 02:19:52,880 --> 02:19:55,040 THE FRONT OR TABLE OF CONTENTS 3253 02:19:55,040 --> 02:19:57,160 TO FIND THE SPECIFIC COMMENTS 3254 02:19:57,160 --> 02:19:58,440 THERE EACH PERSON. 3255 02:19:58,440 --> 02:20:02,640 FIRST I'D LIKE TO CALL ON 3256 02:20:02,640 --> 02:20:05,360 RUSSELL LEHMAN TO GIVE US A 3257 02:20:05,360 --> 02:20:06,320 COMMENT. 3258 02:20:06,320 --> 02:20:07,200 WELCOME, RUSSELL. 3259 02:20:07,200 --> 02:20:10,400 >> GOOD MORNING, GOOD AFTERNOON. 3260 02:20:10,400 --> 02:20:12,160 THANK YOU FOR HAVING ME. 3261 02:20:12,160 --> 02:20:15,720 MY NAME IS RUSSEL LEHMAN I'M A 3262 02:20:15,720 --> 02:20:16,720 MOTIVATIONAL SPEAKER WITH THE 3263 02:20:16,720 --> 02:20:18,440 PLATFORM OF AUTISM AND MENTAL 3264 02:20:18,440 --> 02:20:18,680 HEALTH. 3265 02:20:18,680 --> 02:20:21,400 I HAPPEN TO HAVE AUTISM MYSELF. 3266 02:20:21,400 --> 02:20:24,000 I'D LIKE TO OFFER MY BRIEF 3267 02:20:24,000 --> 02:20:25,720 COMMENTS ON THE SHOCK TREATMENT 3268 02:20:25,720 --> 02:20:27,400 AT THE CENTER. 3269 02:20:27,400 --> 02:20:28,960 AS SOMEBODY WHO'S BEEN IN 3270 02:20:28,960 --> 02:20:30,120 PATIENT IN PSYCHIATRIC WARDS 3271 02:20:30,120 --> 02:20:33,200 THREE TIMES IN MY LIFE AND 3272 02:20:33,200 --> 02:20:35,400 ALWAYS LEFT WORSE OFF THAN WHEN 3273 02:20:35,400 --> 02:20:37,960 I ENTERED DUE TO TRAUMATIC 3274 02:20:37,960 --> 02:20:41,640 EXPERIENCES, THIS HITS CLOSE TO 3275 02:20:41,640 --> 02:20:43,360 HOME FOR ME. 3276 02:20:43,360 --> 02:20:45,520 THE SCHOOL ADVERTISES THE 3277 02:20:45,520 --> 02:20:46,160 BEHAVIOR MODIFICATION PROGRAM AS 3278 02:20:46,160 --> 02:20:48,440 SAFE AND EFFECTIVE AND BACKED BY 3279 02:20:48,440 --> 02:20:52,440 SCIENCE BUT THE SCIENCE IS THAT 3280 02:20:52,440 --> 02:20:54,640 THE GRADUATED ELECTRONIC 3281 02:20:54,640 --> 02:20:56,760 ACCELERATOR THE SHOCK DEVICES 3282 02:20:56,760 --> 02:20:59,120 THEY USE PRODUCE WHEN THEY GIVE 3283 02:20:59,120 --> 02:21:03,520 A SHOCK PRODUCE 90 MILLIGRAMS OF 3284 02:21:03,520 --> 02:21:04,440 ELECTRICITY. 3285 02:21:04,440 --> 02:21:07,080 THAT LASTS TWO SECONDS. 3286 02:21:07,080 --> 02:21:08,640 THAT'S THE STRONGEST DEVICE THEY 3287 02:21:08,640 --> 02:21:09,200 HAVE. 3288 02:21:09,200 --> 02:21:12,920 NOW A CATTLE PROD PRODUCES 10 3289 02:21:12,920 --> 02:21:15,760 FOR A FRACTION OF A SECOND. 3290 02:21:15,760 --> 02:21:21,320 THE ONES ON HUMANS, 90 3291 02:21:21,320 --> 02:21:25,560 MILLIAMPS, TWO SECONDS. 3292 02:21:25,560 --> 02:21:27,400 MY FIRST EXPERIENCE IN THE PSYCH 3293 02:21:27,400 --> 02:21:29,400 WARD WAS AGE 12. 3294 02:21:29,400 --> 02:21:30,680 STAYED THERE FOR FIVE YEARS. 3295 02:21:30,680 --> 02:21:35,320 THEY USED TO TACKLE KIDS FROM 3296 02:21:35,320 --> 02:21:36,440 BEHIND THAT WERE WANDERING DOWN 3297 02:21:36,440 --> 02:21:38,120 THE HALLWAY. 3298 02:21:38,120 --> 02:21:39,560 I REMEMBER ONE TIME MY MOM CAME 3299 02:21:39,560 --> 02:21:41,000 TO VISIT AND A STARTED TO CRY 3300 02:21:41,000 --> 02:21:43,520 BECAUSE I WAS SO HAPPY TO SEE 3301 02:21:43,520 --> 02:21:46,440 THEM AND I PULLED US APART AND 3302 02:21:46,440 --> 02:21:49,720 TOLD HER TO LEAVE BECAUSE THEY 3303 02:21:49,720 --> 02:21:51,920 FELT SHE WAS ENABLING ME AND I 3304 02:21:51,920 --> 02:21:54,520 START RUNNING DOWN THE HALLWAY 3305 02:21:54,520 --> 02:21:55,920 AND I START THINKING THEY'RE 3306 02:21:55,920 --> 02:21:57,040 GOING TO TACKLE ME. 3307 02:21:57,040 --> 02:21:59,040 JUST THAT IS TO TRAUMATIC AND 3308 02:21:59,040 --> 02:22:03,960 THAT HURTS TO THIS DAY. 3309 02:22:03,960 --> 02:22:06,640 WHEN WE CAUSE TRAUMA ON THESE 3310 02:22:06,640 --> 02:22:09,240 YOUNG KIDS, YOUNG ADULTS, IT 3311 02:22:09,240 --> 02:22:10,320 LAST AS A LIFE TIME. 3312 02:22:10,320 --> 02:22:12,640 IT HAS A RIPPLE EFFECT. 3313 02:22:12,640 --> 02:22:14,280 THANKFULLY I DIDN'T GET CLOSE TO 3314 02:22:14,280 --> 02:22:16,440 THE GED DEVICES AND SOME OF THE 3315 02:22:16,440 --> 02:22:18,480 TRAUMATIC EXPERIENCES THAT OCCUR 3316 02:22:18,480 --> 02:22:19,360 IN THE HOSPITALS MAY HAVE HELP 3317 02:22:19,360 --> 02:22:23,960 MY OCD AND OBSESSION AND AUTISM 3318 02:22:23,960 --> 02:22:26,480 BUT AT WHAT COST IN THE LONG RUN 3319 02:22:26,480 --> 02:22:28,040 BECAUSE I NOW I ASSOCIATE THAT 3320 02:22:28,040 --> 02:22:30,640 WITH TRAUMATIC EXPERIENCES AND 3321 02:22:30,640 --> 02:22:31,960 IT TAKES A LOT OF WORK TO HEAL. 3322 02:22:31,960 --> 02:22:33,400 MY QUESTION IS WHAT ARE WE GOING 3323 02:22:33,400 --> 02:22:34,680 TO DO ABOUT THIS? 3324 02:22:34,680 --> 02:22:36,560 I KNOW MY TIME'S COMING TO A 3325 02:22:36,560 --> 02:22:36,840 CLOSE. 3326 02:22:36,840 --> 02:22:40,040 I WANT TO END IT WITH I'VE BEEN 3327 02:22:40,040 --> 02:22:41,640 LOOKING AT THE DRAWINGS SOME OF 3328 02:22:41,640 --> 02:22:44,840 THE KIDS FROM THE ROTTENBERG 3329 02:22:44,840 --> 02:22:45,080 CENTER. 3330 02:22:45,080 --> 02:22:46,120 THERE'S DRAWINGS THESE KIDS DRAW 3331 02:22:46,120 --> 02:22:47,320 AND THEY'RE HEARTBREAKING. 3332 02:22:47,320 --> 02:22:49,280 IT LOOKS LIKE SOMETHING OUT OF 3333 02:22:49,280 --> 02:22:51,160 THE SPANISH INQUISITION. 3334 02:22:51,160 --> 02:22:52,320 WHAT ARE WE DOING? 3335 02:22:52,320 --> 02:22:54,080 ARE WE JUST TALKING THE TALK OR 3336 02:22:54,080 --> 02:22:55,320 GOING TO TAKE ACTION BEHIND 3337 02:22:55,320 --> 02:22:55,520 THIS. 3338 02:22:55,520 --> 02:22:57,320 I KNOW IT'S UP TO THE FDA AT 3339 02:22:57,320 --> 02:22:59,480 THIS POINT BUT LET'S ACTUALLY 3340 02:22:59,480 --> 02:23:01,320 ACT ON OUR SINCERITY OF HELPING 3341 02:23:01,320 --> 02:23:02,640 INDIVIDUALS WITH AUTISM AND 3342 02:23:02,640 --> 02:23:04,440 DEVELOPMENT DISABILITIES. 3343 02:23:04,440 --> 02:23:07,520 THANK YOU. 3344 02:23:07,520 --> 02:23:09,080 >> THANK YOU, RUSSELL FOR 3345 02:23:09,080 --> 02:23:09,960 SHARING THOSE COMMENTS. 3346 02:23:09,960 --> 02:23:10,920 WE'LL HAVE A DISCUSSION PERIOD 3347 02:23:10,920 --> 02:23:14,720 FOR THE COMMITTEE AT THE END OF 3348 02:23:14,720 --> 02:23:15,680 THE DMENT PERIOD SO WE 3349 02:23:15,680 --> 02:23:16,960 APPRECIATE YOUR COMMENTS, 3350 02:23:16,960 --> 02:23:18,360 RUSSELL AND WE'LL GIVE PEOPLE A 3351 02:23:18,360 --> 02:23:20,640 CHANCE TO RESPOND AT THE END OF 3352 02:23:20,640 --> 02:23:21,760 THE SESSION. 3353 02:23:21,760 --> 02:23:28,160 NEXT I'D LIKE TO INVITE NICOLE 3354 02:23:28,160 --> 02:23:52,640 CORRADO TO SHARE SOME COMMENTS. 3355 02:23:52,640 --> 02:23:58,480 DO WE HAVE NICOLE CORRADO ON 3356 02:23:58,480 --> 02:24:01,320 ZOOM? 3357 02:24:01,320 --> 02:24:02,480 >> IT DOESN'T LOOK LIKE SHE'S 3358 02:24:02,480 --> 02:24:02,720 ON. 3359 02:24:02,720 --> 02:24:03,880 >> OKAY. 3360 02:24:03,880 --> 02:24:05,880 WE'LL MOVE FORWARD BUT IF SHE 3361 02:24:05,880 --> 02:24:06,520 APPEARS ON ZOOM DURING THIS 3362 02:24:06,520 --> 02:24:09,400 SESSION WE CAN COME BACK. 3363 02:24:09,400 --> 02:24:14,640 NEXT, I'D LIKE TO MOVE TO KAREN 3364 02:24:14,640 --> 02:24:16,280 HEFFLER. 3365 02:24:16,280 --> 02:24:19,360 >> HI, I'M DR. KAREN HEFFLER. 3366 02:24:19,360 --> 02:24:21,280 I'M AN AUTISM RESEARCHER AT 3367 02:24:21,280 --> 02:24:25,320 DREXEL UNIVERSITY AND MOTHER OF 3368 02:24:25,320 --> 02:24:27,400 AN AUTISTIC ADULT SON AND ASK 3369 02:24:27,400 --> 02:24:29,320 YOU TO LISTEN TO THE RESEARCH 3370 02:24:29,320 --> 02:24:31,080 I'LL BRIEFLY REVIEW AND DISCUSS 3371 02:24:31,080 --> 02:24:34,320 IT AND ACT ON IT URGENT I IN A 3372 02:24:34,320 --> 02:24:35,080 STRATEGIC PLAN. 3373 02:24:35,080 --> 02:24:36,400 WHILE AUTISM PREVALENCE RATES 3374 02:24:36,400 --> 02:24:38,480 CONTINUE TO RISE THERE'S AMPLE 3375 02:24:38,480 --> 02:24:42,760 FINDINGS OF AN ASSOCIATION 3376 02:24:42,760 --> 02:24:45,880 BETWEEN ORAL SCREEN EXPOSURE AND 3377 02:24:45,880 --> 02:24:47,360 OUTCOMES AND THERE'S GROWING 3378 02:24:47,360 --> 02:24:48,440 REPORTS OF INTERVENTION 3379 02:24:48,440 --> 02:24:49,560 INCLUDING TURNING OFF SCREENS 3380 02:24:49,560 --> 02:24:52,480 AND FOCUSSING ON SOCIAL 3381 02:24:52,480 --> 02:24:53,560 ENGAGEMENT STRATEGIES IN 3382 02:24:53,560 --> 02:24:56,080 CHILDREN 4 YEARS OLD AND YOUNGER 3383 02:24:56,080 --> 02:24:57,360 WITH A HISTORY OF HIGH EXPOSURE 3384 02:24:57,360 --> 02:25:00,520 TO SCREENS RESULTING IN MORE 3385 02:25:00,520 --> 02:25:04,480 RAPID AND EXTENSIVE IMPROVEMENT 3386 02:25:04,480 --> 02:25:08,760 IN AUTISM SYMPTOM AND OUR WORK 3387 02:25:08,760 --> 02:25:10,480 SHOWS A DECREASE IN PARENTS' 3388 02:25:10,480 --> 02:25:13,000 STRESS AND THE FINDINGS ARE 3389 02:25:13,000 --> 02:25:13,720 CONSISTENT WITH CHILD 3390 02:25:13,720 --> 02:25:15,560 DEVELOPMENT LITERATURE. 3391 02:25:15,560 --> 02:25:19,840 INFANTS AND TODDLERS LEARN 3392 02:25:19,840 --> 02:25:21,520 THROUGH PARENT-CHILD ANTIACTIONS 3393 02:25:21,520 --> 02:25:23,520 AND CHILD FOCUSSED SCREEN 3394 02:25:23,520 --> 02:25:25,360 INTERFERE WITH THESE CRITICAL 3395 02:25:25,360 --> 02:25:28,080 PARENT-CHILD INTERACTION. 3396 02:25:28,080 --> 02:25:30,720 A LANDMARK 2021 AUSTRALIAN STUDY 3397 02:25:30,720 --> 02:25:34,400 SHOWED PARENT-INFANT SOCIAL 3398 02:25:34,400 --> 02:25:36,920 COMMUNICATION TRAINING DECREASED 3399 02:25:36,920 --> 02:25:39,840 AUTISM OUTCOME IN INFANTS 3400 02:25:39,840 --> 02:25:41,680 SHOWING EARLY SIGNS OF AUTISM 3401 02:25:41,680 --> 02:25:42,920 AND HIGHER SCREEN TIME IS 3402 02:25:42,920 --> 02:25:47,440 ASSOCIATED WITH LANGUAGE DELAY, 3403 02:25:47,440 --> 02:25:48,560 SOCIAL IMPAIRMENT, CHALLENGING 3404 02:25:48,560 --> 02:25:50,680 BEHAVIORS AND DYSREGULATION. 3405 02:25:50,680 --> 02:25:53,400 ALL OF WHICH ARE CO-OCCURRING IN 3406 02:25:53,400 --> 02:25:53,960 AUTISM. 3407 02:25:53,960 --> 02:25:55,640 IN THE U.S., TODDLERS AVERAGE 3408 02:25:55,640 --> 02:25:58,160 2.5 HOURS PER DAY OF SCREEN TIME 3409 02:25:58,160 --> 02:26:00,240 AND 50% HAVE THEIR OWN MOBILE 3410 02:26:00,240 --> 02:26:01,800 DEVICES. 3411 02:26:01,800 --> 02:26:06,680 IN ROMANIA, 97% OF CHILDREN 3412 02:26:06,680 --> 02:26:10,320 PRESENTING WITH A DIAGNOSIS HAD 3413 02:26:10,320 --> 02:26:12,080 SCREEN EXPOSURE OF FOUR HOURS 3414 02:26:12,080 --> 02:26:16,480 PER DAY PER INFANCY. 3415 02:26:16,480 --> 02:26:17,840 PROVIDE AN URGENT RECOMMENDATION 3416 02:26:17,840 --> 02:26:18,720 IN THE STRATEGIC MILLION TO 3417 02:26:18,720 --> 02:26:21,960 PROVIDE A FOCUS ON RESEARCH TO 3418 02:26:21,960 --> 02:26:26,240 STUDY FIRST PARENT EDUCATION ON 3419 02:26:26,240 --> 02:26:28,360 DIGITAL SCREEN TIME AND SOCIAL 3420 02:26:28,360 --> 02:26:29,080 ENGAGEMENT STRATEGY WITH AUTISM 3421 02:26:29,080 --> 02:26:31,760 AND CHILD DEVELOPMENT AS OUTCOME 3422 02:26:31,760 --> 02:26:33,480 MEASURES AND SECONDLY, PARENT 3423 02:26:33,480 --> 02:26:34,800 EDUCATION AND SUPPORT TO 3424 02:26:34,800 --> 02:26:37,040 DECREASE SCREEN TIME AND FOCUS 3425 02:26:37,040 --> 02:26:39,600 ON SOCIAL STRATEGIES IN YOUNG 3426 02:26:39,600 --> 02:26:41,880 CHILDREN WITH AUTISM HIGH SCREEN 3427 02:26:41,880 --> 02:26:42,880 EXPOSURE WITH AUTISM SYMPTOMS 3428 02:26:42,880 --> 02:26:44,840 AND CHILD DEVELOPMENT AS OUTCOME 3429 02:26:44,840 --> 02:26:45,400 MEASURES. 3430 02:26:45,400 --> 02:26:48,680 AS A PARENT OF AN ADULT SON WITH 3431 02:26:48,680 --> 02:26:50,280 AUTISM, I UNDERSTAND THE NEED 3432 02:26:50,280 --> 02:26:54,520 FOR SERVICES FOR ALL IMPACTED BY 3433 02:26:54,520 --> 02:26:54,760 AUTISM. 3434 02:26:54,760 --> 02:26:56,240 WITH RISING AUTISM PREVALENCE, 3435 02:26:56,240 --> 02:26:58,320 THE NEED FOR LIFE LONG SERVICES 3436 02:26:58,320 --> 02:27:02,600 IS ASTRONOMICALLY INCREASING. 3437 02:27:02,600 --> 02:27:03,320 ADDRESSING THIS ENVIRONMENTAL 3438 02:27:03,320 --> 02:27:05,160 RISK FACTOR FROM BOTH THE 3439 02:27:05,160 --> 02:27:06,160 PREVENTION AND INTERVENTION 3440 02:27:06,160 --> 02:27:09,000 PATHWAYS HAS THE POTENTIAL TO 3441 02:27:09,000 --> 02:27:10,400 SIGNIFICANTLY IMPROVE OUTCOMES 3442 02:27:10,400 --> 02:27:12,560 IN THE YOUNGEST CHILDREN WITH 3443 02:27:12,560 --> 02:27:13,280 THIS EXPOSURE. 3444 02:27:13,280 --> 02:27:14,640 THERE BE LEAVING GREATER 3445 02:27:14,640 --> 02:27:17,120 RESOURCES FOR OTHER CHILDREN AND 3446 02:27:17,120 --> 02:27:18,600 ADULTS WITH AUTISM. 3447 02:27:18,600 --> 02:27:19,680 EXTENSIVE RESEARCH REFERENCES 3448 02:27:19,680 --> 02:27:20,920 ARE IN MY WRITTEN COMMENT. 3449 02:27:20,920 --> 02:27:26,320 THANK YOU FOR YOUR ATTENTION. 3450 02:27:26,320 --> 02:27:28,080 >> THANK YOU, KAREN HEFFLER FOR 3451 02:27:28,080 --> 02:27:29,320 THOSE COMMENTS. 3452 02:27:29,320 --> 02:27:30,560 WE APPRECIATE YOU BEING HERE AND 3453 02:27:30,560 --> 02:27:33,560 SHARING WITH US. 3454 02:27:33,560 --> 02:27:35,040 WE WILL NEXT HEAR FROM ALISON 3455 02:27:35,040 --> 02:27:38,640 SINGER. 3456 02:27:38,640 --> 02:27:40,040 WELCOME. 3457 02:27:40,040 --> 02:27:42,640 >> HI, I'M ALISON SINGER THE 3458 02:27:42,640 --> 02:27:44,040 PRESIDENT OF THE AUTISM SCIENCE 3459 02:27:44,040 --> 02:27:45,880 FOUNDATION AND THE MOTHER OF A 3460 02:27:45,880 --> 02:27:46,520 DAUGHTER WITH PROFOUND AUTISM 3461 02:27:46,520 --> 02:27:51,040 AND SERVE AS A PUBLIC MEMBER OF 3462 02:27:51,040 --> 02:27:52,680 THE IACC FOR 12 YEARS. 3463 02:27:52,680 --> 02:27:55,920 IN DECEMBER 2021 THE LANCET 3464 02:27:55,920 --> 02:27:57,040 PUBLISHED A SPECIAL REPORT 3465 02:27:57,040 --> 02:27:59,360 ENTITLE THE LANCET COMMISSION ON 3466 02:27:59,360 --> 02:28:01,920 THE FUTURE OF CARE AND RESEARCH 3467 02:28:01,920 --> 02:28:05,480 IN AUTISM. 3468 02:28:05,480 --> 02:28:07,800 YOU'LL HEAR MORE LATER TODAY. 3469 02:28:07,800 --> 02:28:10,400 IN THE REPORT THEY INTRODUCED 3470 02:28:10,400 --> 02:28:13,560 THY TERM PROFOUND AUTISM DEFINED 3471 02:28:13,560 --> 02:28:15,000 AS PEOPLE WITH INTELLECTUAL 3472 02:28:15,000 --> 02:28:16,560 DISABILITY AND MINIMALLY VERBAL 3473 02:28:16,560 --> 02:28:19,320 AND LIKELY TO NEED 24 HOURS 3474 02:28:19,320 --> 02:28:21,360 SUPPORT THROUGHOUT THEIR LIVES. 3475 02:28:21,360 --> 02:28:23,200 THE GOAL OF INTRODUCING THIS 3476 02:28:23,200 --> 02:28:28,120 DESIGNATION IS TO PROVIDE MORE 3477 02:28:28,120 --> 02:28:28,920 SPECIFICITY TO THE AUTISM 3478 02:28:28,920 --> 02:28:30,480 SPECTRUM AND EQUIP THE COMMUNITY 3479 02:28:30,480 --> 02:28:33,160 WITH THE LANGUAGE NECESSARY TO 3480 02:28:33,160 --> 02:28:34,400 ENSURE ALL INDIVIDUALS WITH 3481 02:28:34,400 --> 02:28:35,400 AUTISM RECEIVE THE 3482 02:28:35,400 --> 02:28:38,080 ACCOMMODATIONS AND INTERVENTIONS 3483 02:28:38,080 --> 02:28:39,320 THAT THEY NEED. 3484 02:28:39,320 --> 02:28:41,360 CONCISE AND MEANINGFUL TERMS 3485 02:28:41,360 --> 02:28:46,800 LIKE PROFUND AUTISM WILL 3486 02:28:46,800 --> 02:28:49,440 SIMPLIFY THE PROCESS LEADING TO 3487 02:28:49,440 --> 02:28:51,440 QUICKER AND MORE FORCEFUL 3488 02:28:51,440 --> 02:28:51,760 INTERVENTION. 3489 02:28:51,760 --> 02:28:53,120 FOR THOSE WHO BRISTLE AT THE USE 3490 02:28:53,120 --> 02:28:54,720 OF LABELS TO DESCRIBE AUTISM 3491 02:28:54,720 --> 02:28:58,440 IT'S VITAL TO UNDERSTAND THE 3492 02:28:58,440 --> 02:29:05,200 PROFOUND AUTISM DOES NOT SEEK TO 3493 02:29:05,200 --> 02:29:07,760 DEMEAN INDIVIDUALS IN THIS GROUP 3494 02:29:07,760 --> 02:29:09,720 OR INVALIDATE THOSE NOT IN IT 3495 02:29:09,720 --> 02:29:10,560 AND MEANT TO CALL ATTENTION TO 3496 02:29:10,560 --> 02:29:12,880 THE UNIQUE NEEDS OF THIS 3497 02:29:12,880 --> 02:29:14,320 VULNERABLE AND UNDER SERVED 3498 02:29:14,320 --> 02:29:14,600 COMMUNITY. 3499 02:29:14,600 --> 02:29:16,720 BASED ON REVIEW OF SEVERAL 3500 02:29:16,720 --> 02:29:18,560 INTERNATIONAL DATABASES, THE 3501 02:29:18,560 --> 02:29:21,720 LANCET ESTIMATES UP TO 48% OF 3502 02:29:21,720 --> 02:29:22,840 THE AUTISM POPULATION FALLS INTO 3503 02:29:22,840 --> 02:29:26,400 THIS CATEGORY OF PROFOUND 3504 02:29:26,400 --> 02:29:29,200 AUTISM. 3505 02:29:29,200 --> 02:29:30,200 IN OTHER WORDS, FOR NEARLY EVERY 3506 02:29:30,200 --> 02:29:32,320 AUTISTIC PERSON TRYING TO GET A 3507 02:29:32,320 --> 02:29:33,960 JOB AT MICROSOFT THERE'S ONE 3508 02:29:33,960 --> 02:29:36,280 NON-VERBAL AND STRUGGLING TO GET 3509 02:29:36,280 --> 02:29:38,240 THROUGH THE DAY WITHOUT PEALING 3510 02:29:38,240 --> 02:29:39,920 THE SKIN OFF HER ARM. 3511 02:29:39,920 --> 02:29:42,640 THE DATA INDICATE FOR EVERY HIGH 3512 02:29:42,640 --> 02:29:45,200 FUNCTIONING ADULT FOR AUTISM AT 3513 02:29:45,200 --> 02:29:46,440 THE IACC TABLE THERE SHOULD BE A 3514 02:29:46,440 --> 02:29:47,600 PARENT REPRESENTING THE NEED OF 3515 02:29:47,600 --> 02:29:50,640 A CHILD OR ADULT WITH PROFOUND 3516 02:29:50,640 --> 02:29:50,880 AUTISM. 3517 02:29:50,880 --> 02:29:52,160 SINCE THE PUBLICATION OF THE 3518 02:29:52,160 --> 02:29:56,280 LANCET REPORT, I HAVE HEARD FROM 3519 02:29:56,280 --> 02:29:57,680 COUNTLESS PARENTS OF PROFOUNDLY 3520 02:29:57,680 --> 02:29:59,680 AUTISTIC CHILDREN WHO ARE SCARED 3521 02:29:59,680 --> 02:30:01,520 ABOUT THEIR CHILDREN'S FUTURES 3522 02:30:01,520 --> 02:30:05,240 AND FEEL BULLIED INTO SILENCE BY 3523 02:30:05,240 --> 02:30:06,360 HIGHER FUNCTIONING 3524 02:30:06,360 --> 02:30:08,360 SELF-ADVOCATES WHO OFTEN HAVE A 3525 02:30:08,360 --> 02:30:10,240 FUNDAMENTAL MISUNDERSTANDING OF 3526 02:30:10,240 --> 02:30:12,160 WHAT HAVING PROFOUND AUTISM EVEN 3527 02:30:12,160 --> 02:30:12,360 MEANS. 3528 02:30:12,360 --> 02:30:14,960 THESE PARENTS TELL ME THEY ARE 3529 02:30:14,960 --> 02:30:17,320 EXHAUSTED BOTH PHYSICALLY AND 3530 02:30:17,320 --> 02:30:19,280 EMOTIONALLY BY THE WORK IT TAKES 3531 02:30:19,280 --> 02:30:20,560 TO KEEP THEIR CHILDREN HEALTHY 3532 02:30:20,560 --> 02:30:23,000 AND SAFE EACH DAY AND BY THE 3533 02:30:23,000 --> 02:30:24,720 DIFFICULTIES IN SECURING QUALITY 3534 02:30:24,720 --> 02:30:25,120 CARE. 3535 02:30:25,120 --> 02:30:27,000 IN CLOSING, I URGE THIS 3536 02:30:27,000 --> 02:30:28,400 COMMITTEE TO ADD ADDITIONAL 3537 02:30:28,400 --> 02:30:30,600 PUBLIC MEMBERS WHO ARE PARENTS 3538 02:30:30,600 --> 02:30:31,800 OF INDIVIDUALS WITH PROFOUND 3539 02:30:31,800 --> 02:30:35,080 AUTISM AND I URGE THIS COMMITTEE 3540 02:30:35,080 --> 02:30:37,560 TO FOCUS ON THE TRADITIONALLY 3541 02:30:37,560 --> 02:30:39,120 EXCLUDED POPULATION IN THE 3542 02:30:39,120 --> 02:30:42,520 ANNUAL STRATEGIC PLAN FOR AUTISM 3543 02:30:42,520 --> 02:30:42,760 RESEARCH. 3544 02:30:42,760 --> 02:30:44,120 THE CURRENT LIST OF IACC 3545 02:30:44,120 --> 02:30:47,520 STRATEGIC PLAN THEMES PUBLISHED 3546 02:30:47,520 --> 02:30:51,360 ON THE IACC WEBSITE GROSSLY 3547 02:30:51,360 --> 02:30:55,440 UNDER WEIGHTS NEURODIVERSITY 3548 02:30:55,440 --> 02:30:57,880 TEAM AND REDUCES THE PEOPLE WITH 3549 02:30:57,880 --> 02:31:00,160 PROFOUND AUTISM TO A FOOT NOTE 3550 02:31:00,160 --> 02:31:02,640 AND REVEALS A DISCONNECT TO THE 3551 02:31:02,640 --> 02:31:05,680 SUFFERING A TREMENDOUS FORCE OF 3552 02:31:05,680 --> 02:31:06,640 THE AUTISM POPULATION LIVES WITH 3553 02:31:06,640 --> 02:31:08,360 EVERY DAY. 3554 02:31:08,360 --> 02:31:09,040 THANK YOU FOR YOUR CONSIDERATION 3555 02:31:09,040 --> 02:31:11,840 AND THANK YOU FOR THE WORK YOU 3556 02:31:11,840 --> 02:31:13,520 DO TO SUPPORT THE NEEDS OF ALL 3557 02:31:13,520 --> 02:31:14,480 THE NUMBERS OF THE AUTISM 3558 02:31:14,480 --> 02:31:14,720 COMMUNITY. 3559 02:31:14,720 --> 02:31:18,640 >> THANK YOU, ALISON. 3560 02:31:18,640 --> 02:31:22,440 NEXT WE HAVE MICHAEL HA. 3561 02:31:22,440 --> 02:31:29,400 ARE YOU IN THE ZOOM ROOM? 3562 02:31:29,400 --> 02:31:29,920 >> YES. 3563 02:31:29,920 --> 02:31:30,520 >> THANK YOU. 3564 02:31:30,520 --> 02:31:33,320 >> MY NAME IS MICHAEL AND I HAVE 3565 02:31:33,320 --> 02:31:37,600 A 4-YEAR-OLD SON NAMED RYKER 3566 02:31:37,600 --> 02:31:40,160 BORN IN THE MODERN WORLD OF 3567 02:31:40,160 --> 02:31:42,720 SOCIAL TECHNOLOGY AND THE BOND 3568 02:31:42,720 --> 02:31:45,360 WAS SEPARATED BY NOTHING MORE 3569 02:31:45,360 --> 02:31:52,480 THAN A WI-FI AND SO MANY PARENTS 3570 02:31:52,480 --> 02:31:57,320 DEPEND ON DEVICES WHILE WE DO 3571 02:31:57,320 --> 02:32:05,920 COOKING, CLEANING, CREATING AN 3572 02:32:05,920 --> 02:32:08,360 INCOME AND THIS IS A MESSAGE OF 3573 02:32:08,360 --> 02:32:15,120 HOPE AND BRING AWARENESS TO THE 3574 02:32:15,120 --> 02:32:16,920 DETRIMENTAL AFFECT OF SCREEN 3575 02:32:16,920 --> 02:32:21,920 TIME AND TAKES AWAY THE BOND. 3576 02:32:21,920 --> 02:32:23,160 TO ILLUSTRATE MY OWN EXPERIENCES 3577 02:32:23,160 --> 02:32:24,600 HE WAS DIAGNOSED AROUND 18 3578 02:32:24,600 --> 02:32:25,160 MONTHS OLD. 3579 02:32:25,160 --> 02:32:27,680 WE HAD HIM START ON EARLY 3580 02:32:27,680 --> 02:32:29,440 INTERVENTION WITH OTSI AND 3581 02:32:29,440 --> 02:32:31,000 SPEECH THEN ON HIS THIRD 3582 02:32:31,000 --> 02:32:34,200 BIRTHDAY ADDED MORE HOURS 3583 02:32:34,200 --> 02:32:37,320 INCLUDING ADA INTO HIS DAYCARE 3584 02:32:37,320 --> 02:32:40,280 ROUTINE ALL WHICH SEEMED TO HELP 3585 02:32:40,280 --> 02:32:43,480 HIS GROSS MORTAR SKILLS AND 3586 02:32:43,480 --> 02:32:45,520 RECEPTIVE AND -- MOTOR SKILLS 3587 02:32:45,520 --> 02:32:47,440 AND DESPITE INTENSIVE THERAPY 3588 02:32:47,440 --> 02:32:49,240 NONE OF THE SERVICES 3589 02:32:49,240 --> 02:32:50,120 SIGNIFICANTLY INCREASED HIS 3590 02:32:50,120 --> 02:32:52,320 SOCIAL RESPONSES TO OTHERS. 3591 02:32:52,320 --> 02:32:54,720 HE HAD POOR EYE CONTACT AND NO 3592 02:32:54,720 --> 02:32:56,520 SPOKEN LANGUAGE AND PLAY BY 3593 02:32:56,520 --> 02:32:58,560 HIMSELF AND DID NOT ENGAGE WITH 3594 02:32:58,560 --> 02:33:01,040 OTHERS HOWEVER, TWO MONTHS AGO 3595 02:33:01,040 --> 02:33:02,920 WE WERE INDUCED TO A DREXEL 3596 02:33:02,920 --> 02:33:04,480 RESEARCHER WHO SUGGEST WED TRY 3597 02:33:04,480 --> 02:33:07,920 SOME TECHNIQUES THAT SEEMED TO 3598 02:33:07,920 --> 02:33:12,280 HAVE BENEFIT IN A RECENT STUDY 3599 02:33:12,280 --> 02:33:13,720 AND TECH DEVICES DISRUPT 3600 02:33:13,720 --> 02:33:18,920 INTERACTION BETWEEN PARENTS AND 3601 02:33:18,920 --> 02:33:20,680 CHILDREN AND HAD STRATEGIES 3602 02:33:20,680 --> 02:33:22,200 INVOLVING INTENSE SOCIAL 3603 02:33:22,200 --> 02:33:23,760 CONNECTS AND STRATEGY FOR EYE 3604 02:33:23,760 --> 02:33:25,720 CONTACT AND GETTING OUR CHILD'S 3605 02:33:25,720 --> 02:33:25,960 ATTENTION. 3606 02:33:25,960 --> 02:33:27,120 ONE OF THE STRONGEST SUGGESTIONS 3607 02:33:27,120 --> 02:33:30,440 WAS REMOVE ALL TECH AND SCREEN 3608 02:33:30,440 --> 02:33:32,480 TIME COLD TURKEY SO ALL THE 3609 02:33:32,480 --> 02:33:34,680 AVAILABLE MOMENTS WERE SPENT 3610 02:33:34,680 --> 02:33:38,920 WITH SOCIAL INTERACTION. 3611 02:33:38,920 --> 02:33:40,200 WITHIN ONE WEEK WE NOTICED A 3612 02:33:40,200 --> 02:33:42,440 CHANGE IN HIS FAMILY AND 3613 02:33:42,440 --> 02:33:42,720 ENVIRONMENT. 3614 02:33:42,720 --> 02:33:44,840 WITHIN THREE WEEKS HIS RECEPTIVE 3615 02:33:44,840 --> 02:33:47,280 SKILLS TOOK A QUANTUM LEAP AND 3616 02:33:47,280 --> 02:33:48,720 TWO MONTHS IN THE PROGRAM HE'S 3617 02:33:48,720 --> 02:33:50,680 SHOWN SIGNS OF SOCIAL ENGAGEMENT 3618 02:33:50,680 --> 02:33:52,120 AND PARALLEL PLAYING WITH PEER 3619 02:33:52,120 --> 02:33:55,960 AND SOME DIRECT PLAY AT DAYCARE 3620 02:33:55,960 --> 02:33:58,040 AND REDUCING SOME FRACTIONATION 3621 02:33:58,040 --> 02:33:59,240 OF WORDS AND SAYING SOME WORDS 3622 02:33:59,240 --> 02:34:01,920 WITH MEANINGFUL INTENT AND 3623 02:34:01,920 --> 02:34:03,120 GIGGLES AND LOVES THE ATTENTION 3624 02:34:03,120 --> 02:34:04,520 TO HIS PARENTS AND POINTS TO 3625 02:34:04,520 --> 02:34:06,600 OBJECTS HE WANTS AND HAS SHOWN 3626 02:34:06,600 --> 02:34:09,440 REMARKABLE IMPROVEMENTS SINCE 3627 02:34:09,440 --> 02:34:11,080 FOLLOWING THE RECOMMENDATIONS. 3628 02:34:11,080 --> 02:34:14,640 THIS IS NON-INVASIVE, NON-DRUG 3629 02:34:14,640 --> 02:34:17,120 INDUCED AND TEACHABLE THERAPY 3630 02:34:17,120 --> 02:34:18,120 THAT HAS TREMENDOUS POTENTIAL TO 3631 02:34:18,120 --> 02:34:19,920 HELP OTHERS LIKE IT DID FOR MY 3632 02:34:19,920 --> 02:34:21,640 OWN SON. 3633 02:34:21,640 --> 02:34:23,760 WHAT I'M ASKING FOR ISN'T -- I'M 3634 02:34:23,760 --> 02:34:26,080 NOT ASKING FOR HELP FOR MY SON, 3635 02:34:26,080 --> 02:34:28,320 HE IS NOW MAKING RAPID 3636 02:34:28,320 --> 02:34:28,640 IMPROVEMENT. 3637 02:34:28,640 --> 02:34:30,480 I'M ASKING YOU IMPROVE THE FUND 3638 02:34:30,480 --> 02:34:32,000 AND FOCUS ON THIS TIME OF 3639 02:34:32,000 --> 02:34:32,800 INTERVENTION SO OTHER CHILDREN 3640 02:34:32,800 --> 02:34:36,200 AND FAMILIES CAN BENEFIT FROM 3641 02:34:36,200 --> 02:34:38,080 REPLACING TECH TIME WITH SOCIAL 3642 02:34:38,080 --> 02:34:38,720 ENGAGEMENT STRATEGIES BASED ON 3643 02:34:38,720 --> 02:34:40,320 WHAT WE EXPERIENCED. 3644 02:34:40,320 --> 02:34:42,680 SO THIS IS VERY IMPORTANT TO US. 3645 02:34:42,680 --> 02:34:46,120 THANK YOU. 3646 02:34:46,120 --> 02:34:48,120 >> THANK YOU, MICHAEL. 3647 02:34:48,120 --> 02:34:58,480 AND DID NICOLE CORRADO JOIN US? 3648 02:34:58,480 --> 02:35:02,800 CAN THE TEAM LET ME KNOW IF SHE 3649 02:35:02,800 --> 02:35:03,640 IS AVAILABLE? 3650 02:35:03,640 --> 02:35:05,520 I AM NOT SEEING NICOLE SO HER 3651 02:35:05,520 --> 02:35:06,600 COMMENTS ARE INCLUDED IN THE 3652 02:35:06,600 --> 02:35:07,080 PACKET. 3653 02:35:07,080 --> 02:35:09,160 YOU CAN READ THEM. 3654 02:35:09,160 --> 02:35:14,680 THEN IF I CAN GET HELP WITH 3655 02:35:14,680 --> 02:35:16,240 GOING TO THE SLIDES. 3656 02:35:16,240 --> 02:35:16,920 WE'LL SHARE SOMETHING ABOUT THE 3657 02:35:16,920 --> 02:35:24,680 WRITTEN COMMENTS. 3658 02:35:24,680 --> 02:35:25,840 GREAT, YOU CAN SEE NOW THE 3659 02:35:25,840 --> 02:35:27,800 SUMMARY OF WRITTEN COMMENTS WE 3660 02:35:27,800 --> 02:35:28,440 SHARED HERE. 3661 02:35:28,440 --> 02:35:30,120 WE'VE LISTED FOR YOU THE WRITTEN 3662 02:35:30,120 --> 02:35:32,360 COMMENTS WE RECEIVED FROM THE 3663 02:35:32,360 --> 02:35:34,120 COMMUNITY AND TRIED TO PUT THEM 3664 02:35:34,120 --> 02:35:36,920 INTO CATEGORIES SO YOU COULD 3665 02:35:36,920 --> 02:35:38,400 UNDERSTAND THE TYPES OF TOPICS 3666 02:35:38,400 --> 02:35:40,680 THAT PEOPLE WANTED TO WRITE TO 3667 02:35:40,680 --> 02:35:41,920 THE COMMITTEE ABOUT. 3668 02:35:41,920 --> 02:35:43,600 THEY INCLUDE ADDRESSING THE 3669 02:35:43,600 --> 02:35:45,040 NEEDS OF AUTISTIC INDIVIDUALS 3670 02:35:45,040 --> 02:35:47,320 WITH HIGH SUPPORT NEEDS AND/OR 3671 02:35:47,320 --> 02:35:48,440 PROFOUND AUTISM. 3672 02:35:48,440 --> 02:35:49,720 AND THERE'S A NUMBER OF PEOPLE 3673 02:35:49,720 --> 02:35:50,880 ON THAT LIST. 3674 02:35:50,880 --> 02:35:53,440 THERE WERE CONCERNS ABOUT 3675 02:35:53,440 --> 02:35:55,160 MEDICAL PRACTICES AND POTENTIAL 3676 02:35:55,160 --> 02:35:57,000 CAUSES OF AUTISM FROM A FEW 3677 02:35:57,000 --> 02:35:58,680 MEMBERS OF THE PUBLIC. 3678 02:35:58,680 --> 02:36:02,680 THERE WAS A COMMENT ON THE ROLE 3679 02:36:02,680 --> 02:36:08,240 OF THE IACC AND THE FEDERAL 3680 02:36:08,240 --> 02:36:09,720 GOVERNMENT. 3681 02:36:09,720 --> 02:36:11,080 WE HAD COMMENTS ON RESEARCH AND 3682 02:36:11,080 --> 02:36:14,680 POLICY IMPLICATIONS THERE A FEW 3683 02:36:14,680 --> 02:36:15,000 PEOPLE. 3684 02:36:15,000 --> 02:36:16,480 COMMENTS THAT WERE DIRECTED 3685 02:36:16,480 --> 02:36:18,720 TOWARDS THE STRATEGIC PLAN. 3686 02:36:18,720 --> 02:36:20,960 SERVICES AND SUPPORTS FOR ADULTS 3687 02:36:20,960 --> 02:36:24,320 WITH AUTISM OR ON THE AUTISM 3688 02:36:24,320 --> 02:36:26,560 SPECTRUM AND SAFETY AND 3689 02:36:26,560 --> 02:36:27,520 INTERACTIONS WITH LAW 3690 02:36:27,520 --> 02:36:28,040 ENFORCEMENT. 3691 02:36:28,040 --> 02:36:31,320 I BELIEVE THOSE WERE THE TOPICS 3692 02:36:31,320 --> 02:36:32,680 THAT WE HEARD ABOUT THROUGH THE 3693 02:36:32,680 --> 02:36:34,040 WRITTEN COMMENTS AND THE FULL 3694 02:36:34,040 --> 02:36:36,880 TEXT IS AVAILABLE ON OUR WEBSITE 3695 02:36:36,880 --> 02:36:39,880 AND SO AT THIS TIME WE'D LIKE TO 3696 02:36:39,880 --> 02:36:41,760 OPEN THE FLOOR FOR DISCUSSION 3697 02:36:41,760 --> 02:36:43,880 FROM MEMBERS OF THE COMMITTEE TO 3698 02:36:43,880 --> 02:36:46,320 TALK ABOUT THE COMMENTS THAT 3699 02:36:46,320 --> 02:36:48,520 YOU'VE LISTENED TO AND THE ORAL 3700 02:36:48,520 --> 02:36:49,280 COMMENTS AS WELL AS WHAT YOU 3701 02:36:49,280 --> 02:36:51,320 READ IN THE PUBLIC COMMENTS. 3702 02:36:51,320 --> 02:36:54,600 SO DINA, YOU HAVE YOUR HAND UP. 3703 02:36:54,600 --> 02:37:01,080 >> YES, I CAN'T START MY VIDEO. 3704 02:37:01,080 --> 02:37:04,440 I KNOW SOME OF US NEED BOTH. 3705 02:37:04,440 --> 02:37:05,040 THANK YOU. 3706 02:37:05,040 --> 02:37:07,120 I WANT TO THANK EVERYBODY FOR 3707 02:37:07,120 --> 02:37:08,640 THEIR COMMENTARY. 3708 02:37:08,640 --> 02:37:10,440 THE PUBLIC ALWAYS DOES A 3709 02:37:10,440 --> 02:37:12,920 PHENOMENAL JOB OF KEEPING US IN 3710 02:37:12,920 --> 02:37:17,360 THE LOOP. 3711 02:37:17,360 --> 02:37:20,320 I SEE THE PUBLIC COMMENTS IN 3712 02:37:20,320 --> 02:37:22,440 ADVANCE OF THE MEETING AND WHILE 3713 02:37:22,440 --> 02:37:24,640 I AGREE THE LEVEL SYSTEMS IN THE 3714 02:37:24,640 --> 02:37:26,240 DSM ARE NOT ADEQUATE LARGELY 3715 02:37:26,240 --> 02:37:28,200 BECAUSE THEY'RE VERY SUBJECTIVE 3716 02:37:28,200 --> 02:37:29,520 AND I HAVE OBSERVATIONAL, 3717 02:37:29,520 --> 02:37:31,720 PERSONALLY I'D LIKE TO SEE US GO 3718 02:37:31,720 --> 02:37:32,920 BACK TO THE GLOBAL ASSESSMENT OF 3719 02:37:32,920 --> 02:37:35,160 FUNCTIONING THAT LOOKED AT 3720 02:37:35,160 --> 02:37:37,080 ADAPTIVE AND BEHAVIORAL 3721 02:37:37,080 --> 02:37:37,440 SUPPORTS. 3722 02:37:37,440 --> 02:37:40,320 I DO BELIEVE THAT THERE'S SOME 3723 02:37:40,320 --> 02:37:43,160 INFORMATION THAT NEEDS TO BE 3724 02:37:43,160 --> 02:37:43,720 CLARIFIED. 3725 02:37:43,720 --> 02:37:46,200 WHILE NEARLY 60% OF CHILDREN 3726 02:37:46,200 --> 02:37:51,520 WITH AUTISM HAVE INTELLECTUAL OR 3727 02:37:51,520 --> 02:37:52,280 BORDERLINE INTELLECTUAL 3728 02:37:52,280 --> 02:37:54,640 ABILITIES MANY OF THAT 60% GO ON 3729 02:37:54,640 --> 02:37:59,200 TO ENJOY AT LEAST PART-TIME 3730 02:37:59,200 --> 02:37:59,840 EMPLOYMENT, POSITIVE SCHOOL 3731 02:37:59,840 --> 02:38:00,720 ENVIRONMENT WHEN HIGH QUALITY 3732 02:38:00,720 --> 02:38:02,680 SUPPORTS ARE PROVIDED. 3733 02:38:02,680 --> 02:38:05,520 NOT EVERYONE IN THE BORDERLINE 3734 02:38:05,520 --> 02:38:09,320 RANGE IS PROFOUNDLY AFFECTED AS 3735 02:38:09,320 --> 02:38:11,880 THE WORD WAS USED TODAY. 3736 02:38:11,880 --> 02:38:13,880 I WANT TO SAY TOO THAT I.Q. AND 3737 02:38:13,880 --> 02:38:15,600 LANGUAGE ARE NOT PROTECTIVE 3738 02:38:15,600 --> 02:38:20,960 FACTORS PREVENTING OR INHIBITING 3739 02:38:20,960 --> 02:38:22,440 SELF-HARM AND I.Q. DIDN'T 3740 02:38:22,440 --> 02:38:24,920 MITIGATE FUNCTIONAL LIMITATION 3741 02:38:24,920 --> 02:38:28,440 FOR MANY AUTISTICS AND WHY MANY 3742 02:38:28,440 --> 02:38:30,560 AUTISTIC INDIVIDUALS ARE 3743 02:38:30,560 --> 02:38:32,600 IDENTIFIED AS AUTISTIC AND FOR 3744 02:38:32,600 --> 02:38:33,920 SOCIAL SERVICES. 3745 02:38:33,920 --> 02:38:35,920 THE CONTINUUM THROUGHOUT THE 3746 02:38:35,920 --> 02:38:38,400 CONTINUUM, AUTISTIC INDIVIDUALS 3747 02:38:38,400 --> 02:38:50,640 ENGAGE IN NSSIB, SELF-HARM, AND 3748 02:38:50,640 --> 02:38:54,040 SO THEY'RE NOT ABLE TO BE USED 3749 02:38:54,040 --> 02:38:55,880 IN THAT WAY BECAUSE IT'S NOT 3750 02:38:55,880 --> 02:39:01,520 JUST LIMITED TO THAT COMMUNITY. 3751 02:39:01,520 --> 02:39:05,080 RESEARCH HAS ADDRESSED 3752 02:39:05,080 --> 02:39:07,320 NON-SUICIDAL SELF-INJURIOUS 3753 02:39:07,320 --> 02:39:08,240 BEHAVIOR AND OTHERS HAVE TALKED 3754 02:39:08,240 --> 02:39:10,640 ABOUT BARRIERS TO HEALTH CARE 3755 02:39:10,640 --> 02:39:18,600 AND MENTAL HEALTH, AND THERE'S 3756 02:39:18,600 --> 02:39:23,000 BEEN LGBTQ ISSUES AND EATING 3757 02:39:23,000 --> 02:39:24,400 DISORDERS HAVE PLAGUED OUR 3758 02:39:24,400 --> 02:39:24,680 COMMUNITY. 3759 02:39:24,680 --> 02:39:26,600 WE HAVE TO LOOK AT AUTISM AS A 3760 02:39:26,600 --> 02:39:28,080 CONTINUUM OF ISSUES. 3761 02:39:28,080 --> 02:39:33,200 I JUST WANT TO THANK ALL THE 3762 02:39:33,200 --> 02:39:37,360 AUTISTIC ADULTS ESPECIALLY THE 3763 02:39:37,360 --> 02:39:40,560 NUMBER OF AUTISTIC WOMEN WHO 3764 02:39:40,560 --> 02:39:42,640 OFFER THEMSELVES FOR RESEARCH TO 3765 02:39:42,640 --> 02:39:46,760 HELP THE ENTIRETY OF THE 3766 02:39:46,760 --> 02:39:47,920 COMMUNITY. 3767 02:39:47,920 --> 02:39:50,640 LASTLY IN TERMS OF HAVING A 3768 02:39:50,640 --> 02:39:53,760 PARENT WITH A CHILD WITH NEEDS 3769 02:39:53,760 --> 02:39:56,440 OF AUTISM AND WE CONTINUE TO 3770 02:39:56,440 --> 02:39:58,320 DEMEAN MANY MEMBERS ARE PEOPLE 3771 02:39:58,320 --> 02:40:00,720 WITH HIGH SUPPORT NEEDS AND MANY 3772 02:40:00,720 --> 02:40:04,120 MEMBERS OF THE IACC ARE ALSO 3773 02:40:04,120 --> 02:40:05,000 INDIVIDUAL WHO'S PARENTED 3774 02:40:05,000 --> 02:40:06,840 INDIVIDUALS WITH HIGH SUPPORT 3775 02:40:06,840 --> 02:40:08,680 NEEDS AND TO SUGGEST THAT 3776 02:40:08,680 --> 02:40:12,680 SOMEHOW THIS COMMUNITY IS NOT 3777 02:40:12,680 --> 02:40:14,160 REPRESENTED WHEN WE ARE ALL 3778 02:40:14,160 --> 02:40:16,920 CHARGED TO REPRESENT THE 3779 02:40:16,920 --> 02:40:20,600 ENTIRETY OF THE COMMUNITY IT'S 3780 02:40:20,600 --> 02:40:21,880 VERY DISSTRESSING AND KEEPING US 3781 02:40:21,880 --> 02:40:23,320 FROM THE IMPORTANT WORK WE DO 3782 02:40:23,320 --> 02:40:25,160 WHICH IS TO UNIFIED OUR 3783 02:40:25,160 --> 02:40:26,640 COMMUNITY SUCH THAT WE ARE ABLE 3784 02:40:26,640 --> 02:40:28,280 TO PUSH FOR THE POLICY CHANGES 3785 02:40:28,280 --> 02:40:30,600 THAT ARE SO CRITICALLY NEEDED 3786 02:40:30,600 --> 02:40:32,920 FOR THE ENTIRETY OF THE 3787 02:40:32,920 --> 02:40:33,320 COMMUNITY. 3788 02:40:33,320 --> 02:40:37,560 I HOPE WE CAN CONTINUE TO WORK 3789 02:40:37,560 --> 02:40:40,400 TOWARD ELIMINATING FRACTURE. 3790 02:40:40,400 --> 02:40:42,560 I WAS BLESSED TO PARTICIPATE IN 3791 02:40:42,560 --> 02:40:44,680 POLICY ADVOCACY WITH A PAL WHO 3792 02:40:44,680 --> 02:40:47,760 HAS A SON WHO IS NON-SPEAKING, 3793 02:40:47,760 --> 02:40:49,640 HIGH SUPPORT NEEDS, 24/7 SUPPORT 3794 02:40:49,640 --> 02:40:51,760 NEEDS AND WERE ABLE TO PARTNER 3795 02:40:51,760 --> 02:40:53,600 TO BRING POLICY CHANGES IN D.C. 3796 02:40:53,600 --> 02:40:54,920 THAT REPRESENTED THE NEEDS OF 3797 02:40:54,920 --> 02:40:56,040 BOTH OF OUR LOVED ONES. 3798 02:40:56,040 --> 02:41:00,840 SO I THINK WE NEED TO FIND A WAY 3799 02:41:00,840 --> 02:41:02,640 TO UNIFY AND MOVE FORWARD TO GET 3800 02:41:02,640 --> 02:41:04,520 BETTER SERVICES AND SUPPORTS FOR 3801 02:41:04,520 --> 02:41:10,480 THE ENTIRETY OF THE COMMUNITY. 3802 02:41:10,480 --> 02:41:14,920 THANKS FOR LISTENING. 3803 02:41:14,920 --> 02:41:25,880 IS 3804 02:41:25,880 --> 02:41:26,440 >> THANK YOU. 3805 02:41:26,440 --> 02:41:30,520 CAN WE HAVE A COMMENT FROM OUR 3806 02:41:30,520 --> 02:41:31,960 TEAM. 3807 02:41:31,960 --> 02:41:36,880 >> I'M FROM THE FDA BECAUSE I 3808 02:41:36,880 --> 02:41:42,000 DID REVIEW THE PUBLIC COMMENT 3809 02:41:42,000 --> 02:41:47,400 AND WANTED TO ADDRESS THE 3810 02:41:47,400 --> 02:41:50,360 CONCERNS ABOUT THE USE OF 3811 02:41:50,360 --> 02:41:51,000 STIMULATION DEVICES. 3812 02:41:51,000 --> 02:41:53,400 I KNOW THE ISSUE IS WORKING ITS 3813 02:41:53,400 --> 02:41:54,920 WAY THROUGH THE COURTS AND I 3814 02:41:54,920 --> 02:41:57,200 DON'T HAVE ANY SPECIFIC UPDATES 3815 02:41:57,200 --> 02:41:59,480 TODAY BUT I AM TAKING NOTE AND 3816 02:41:59,480 --> 02:42:05,560 WILL BE BRINGING BACK ANY 3817 02:42:05,560 --> 02:42:06,080 COMME 3818 02:42:06,080 --> 02:42:06,320 COMMENTS. 3819 02:42:06,320 --> 02:42:07,400 THANK YOU FOR HAVING ME. 3820 02:42:07,400 --> 02:42:11,960 >> THANK YOU, MARTINE. 3821 02:42:11,960 --> 02:42:18,640 NEXT, SCOTT ROBERTSON. 3822 02:42:18,640 --> 02:42:20,320 >> I'M SCOTT ROBERTSON. 3823 02:42:20,320 --> 02:42:21,240 I'VE BEEN ON THE MEETS BEFORE 3824 02:42:21,240 --> 02:42:23,760 BUT ON THE ALTERNATE FOR DO L 3825 02:42:23,760 --> 02:42:28,120 AND REPRESENTING US RIGHT NOW 3826 02:42:28,120 --> 02:42:29,480 DURING THIS AFTERNOON PERIOD. 3827 02:42:29,480 --> 02:42:37,480 I WANTED TO FIRST COMMENT ON THE 3828 02:42:37,480 --> 02:42:40,520 ORAL COMMENTS AS FAR AS THE 3829 02:42:40,520 --> 02:42:42,680 JUDGE ROTTENBERG CENTER AND 3830 02:42:42,680 --> 02:42:43,560 GIVES CONCERNS IN TERMS OF THE 3831 02:42:43,560 --> 02:42:45,480 HIGH LEVEL OF NUANCE MENTIONED 3832 02:42:45,480 --> 02:42:48,800 AND THAT MAKES ME THINK IN TERMS 3833 02:42:48,800 --> 02:42:49,720 OF THE NEED AS FAR AS HUMAN 3834 02:42:49,720 --> 02:42:50,840 RIGHTS FOCUSES. 3835 02:42:50,840 --> 02:42:53,240 I DON'T KNOW WHETHER THAT'S 3836 02:42:53,240 --> 02:42:54,680 SOMETHING THAT CAN GO MORE IN 3837 02:42:54,680 --> 02:42:56,920 THE STRATEGIC PLAN OR IN OTHER 3838 02:42:56,920 --> 02:42:57,800 DOCUMENTS BUT I THINK IT'S 3839 02:42:57,800 --> 02:43:00,160 SOMETHING DIFFERENT FOR US WITH 3840 02:43:00,160 --> 02:43:02,120 THE CARES ACT. 3841 02:43:02,120 --> 02:43:04,480 YOU HAVE CARES ACT VERSE US 3842 02:43:04,480 --> 02:43:06,000 OTHER LAWS LIKE OTHERS THAT TALK 3843 02:43:06,000 --> 02:43:09,680 MORE ABOUT HUMAN RIGHTS AND 3844 02:43:09,680 --> 02:43:11,720 SELF-DETERMINATION AND 3845 02:43:11,720 --> 02:43:12,280 INDEPENDENCE AND COMMUNITY 3846 02:43:12,280 --> 02:43:13,680 LIVING AND INCLUSION. 3847 02:43:13,680 --> 02:43:16,400 I DON'T KNOW IF WE CAN 3848 02:43:16,400 --> 02:43:17,120 STRENGTHEN THAT THROUGH THE 3849 02:43:17,120 --> 02:43:19,320 STRATEGIC PLAN OR OTHER S IN THE 3850 02:43:19,320 --> 02:43:21,960 FUTURE BUT IT HELPS SPOTLIGHT 3851 02:43:21,960 --> 02:43:24,200 SOMETHING BROADER THAN OBVIOUSLY 3852 02:43:24,200 --> 02:43:25,680 IT'S HORRIBLE IN TERMS OF 3853 02:43:25,680 --> 02:43:27,640 EELECTRIC SHOCK BUT I THINK 3854 02:43:27,640 --> 02:43:29,320 THERE'S A BROADER FOCUS IN TERMS 3855 02:43:29,320 --> 02:43:30,120 OF HUMAN RIGHTS. 3856 02:43:30,120 --> 02:43:32,160 I ALSO WANT TO CONCUR IN TERMS 3857 02:43:32,160 --> 02:43:35,840 OF WHAT HAS ALREADY BEEN SAID AS 3858 02:43:35,840 --> 02:43:37,120 FAR AS SUPPORTS AND SERVICES 3859 02:43:37,120 --> 02:43:41,600 SHOULD BE TAILORED TO THE 3860 02:43:41,600 --> 02:43:43,320 INDIVIDUAL SO THAT FOLKS CAN 3861 02:43:43,320 --> 02:43:45,480 HAVE THE SUPPORTS AND SERVICES 3862 02:43:45,480 --> 02:43:50,680 THEY THAT NEED IN ORDER TO BE 3863 02:43:50,680 --> 02:43:52,120 SUCCESSFUL AND BE ABLE TO HAVE 3864 02:43:52,120 --> 02:43:56,360 THE HIGH QUALITY OF LIFE THAT IS 3865 02:43:56,360 --> 02:43:57,200 EMPHASIZED A LOT IN THE AUTISM 3866 02:43:57,200 --> 02:43:58,400 CARES ACT AND THEN I HOPE WE 3867 02:43:58,400 --> 02:44:02,320 CONDITION TO HAVE OTHER 3868 02:44:02,320 --> 02:44:05,760 DISCUSSIONS ON THAT -- WE CAN 3869 02:44:05,760 --> 02:44:06,760 CONTINUE TO HAVE DISCUSSIONS ON 3870 02:44:06,760 --> 02:44:09,440 THAT AND I CONCUR SOMETIMES WE 3871 02:44:09,440 --> 02:44:10,440 MAKE GENERALIZATIONS ABOUT 3872 02:44:10,440 --> 02:44:11,920 FUNCTIONING ON A GLOBAL SCALE 3873 02:44:11,920 --> 02:44:14,120 AND I THINK A MORE MODERN 3874 02:44:14,120 --> 02:44:15,520 UNDERSTANDING FROM THE RESEARCH 3875 02:44:15,520 --> 02:44:16,600 LITERATURE AND FROM PROMISING 3876 02:44:16,600 --> 02:44:18,840 AND BEST PRACTICES IS TO TAILOR 3877 02:44:18,840 --> 02:44:21,240 IT AND TO INDIVIDUALIZED IT TO 3878 02:44:21,240 --> 02:44:24,840 MEET THE NEEDS OF NOT ONLY FOR 3879 02:44:24,840 --> 02:44:26,400 AUTISTIC PEOPLE AND MOST FOLKS 3880 02:44:26,400 --> 02:44:30,080 KNOW I'M AUTISTIC MYSELF IS FOR 3881 02:44:30,080 --> 02:44:32,040 FOLKS OVERALL WITH SIGNIFICANT 3882 02:44:32,040 --> 02:44:34,240 DISABILITIES AND OTHER FOLKS IN 3883 02:44:34,240 --> 02:44:35,400 LIFE IS HAVING THE 3884 02:44:35,400 --> 02:44:36,400 INDIVIDUALIZED CUSTOMIZED NATURE 3885 02:44:36,400 --> 02:44:37,520 FOR SUPPORTS AND SERVICES IS 3886 02:44:37,520 --> 02:44:41,200 CRUCIAL. 3887 02:44:41,200 --> 02:44:44,120 AND OBVIOUSLY I ALSO CONCUR WITH 3888 02:44:44,120 --> 02:44:46,160 THE FOCUS AS FAR AS EMPLOYMENT, 3889 02:44:46,160 --> 02:44:47,560 ETCETERA, THAT FOLKS NEED BETTER 3890 02:44:47,560 --> 02:44:50,320 ACCESS TO THAT AND GLAD IT'S A 3891 02:44:50,320 --> 02:44:51,880 MAJOR EMPHASIS FOR THE IACC TO 3892 02:44:51,880 --> 02:44:56,440 PLAN AND FOCUS. 3893 02:44:56,440 --> 02:44:58,240 >> THANK YOU, SCOTT. 3894 02:44:58,240 --> 02:44:59,960 AND I DON'T KNOW IF YOU'D LIKE 3895 02:44:59,960 --> 02:45:02,360 TO SPEAK OR I DON'T HAVE 3896 02:45:02,360 --> 02:45:03,000 ANYTHING -- I SEE SOMETHING IN 3897 02:45:03,000 --> 02:45:29,920 THE CHAT. 3898 02:45:29,920 --> 02:45:35,800 I WAS ABOUT TO READ FOR HER. 3899 02:45:35,800 --> 02:45:38,920 HER COMMENTS SO SHE SAYS PERHAPS 3900 02:45:38,920 --> 02:45:41,800 IT BEARS REPEATING YET AGAIN 3901 02:45:41,800 --> 02:45:46,320 THAT BEING AN AUTISTIC ADULT AND 3902 02:45:46,320 --> 02:45:47,600 PARENT ARE NOT MUTUALLY 3903 02:45:47,600 --> 02:45:49,120 EXCLUSIVE AND IT'S PRESUMPTIVE 3904 02:45:49,120 --> 02:45:51,720 TO MAKE A DECLARATION FOR EVERY 3905 02:45:51,720 --> 02:45:53,640 HIGH FUNCTIONING IACC MEMBER 3906 02:45:53,640 --> 02:45:59,160 THERE SHOULD BE A PARENT OF AN 3907 02:45:59,160 --> 02:46:07,120 INDIVIDUAL WITH PROFOUND AUTISM. 3908 02:46:07,120 --> 02:46:09,600 FIRST, HAVE YOU DONE RESEARCH TO 3909 02:46:09,600 --> 02:46:12,240 KNOW THIS DOESN'T EXIST AND 3910 02:46:12,240 --> 02:46:14,160 INTERSECTIONALITY EXISTS AND 3911 02:46:14,160 --> 02:46:17,360 IT'S POSSIBLE TO BE AN 3912 02:46:17,360 --> 02:46:19,480 INDIVIDUAL THAT WEARS A LOT OF 3913 02:46:19,480 --> 02:46:22,040 HATS AND YOU CAN BE A HIGH 3914 02:46:22,040 --> 02:46:27,960 FUNCTIONING ADULT OR PARENT OR 3915 02:46:27,960 --> 02:46:28,480 SIBLI 3916 02:46:28,480 --> 02:46:28,720 SIBLING. 3917 02:46:28,720 --> 02:46:29,760 HAVE YOU PEOPLE HERE ON THIS 3918 02:46:29,760 --> 02:46:30,520 COMMITTEE LIKE THIS. 3919 02:46:30,520 --> 02:46:32,720 THIRD, YOU DO NOT KNOW WHAT THE 3920 02:46:32,720 --> 02:46:35,360 FUNCTIONING LEVEL OF ANY IACC 3921 02:46:35,360 --> 02:46:38,920 MEMBER IS ONLY WHAT YOU PRESUME. 3922 02:46:38,920 --> 02:46:43,480 AND THIS IS PART ONE OF TWO. 3923 02:46:43,480 --> 02:46:53,800 I ONLY HAVE PART ONE. 3924 02:46:53,800 --> 02:46:57,320 IF THERE'S SOMETHING ADDITIONAL 3925 02:46:57,320 --> 02:46:59,200 WE CAN COME BACK AND NICOLE YOU 3926 02:46:59,200 --> 02:46:59,960 CAN GIVE YOUR -- 3927 02:46:59,960 --> 02:47:05,480 >> CAN I APOLOGIZE, MS. CORRADO, 3928 02:47:05,480 --> 02:47:07,400 WE'LL GET TO YOU AND I WANT TO 3929 02:47:07,400 --> 02:47:08,080 RESPOND BECAUSE THERE'S COMMENTS 3930 02:47:08,080 --> 02:47:10,360 ALONG THE SAME LINES AND MY HAND 3931 02:47:10,360 --> 02:47:14,600 IS RAISED ON THIS SPECIFIC TOPIC 3932 02:47:14,600 --> 02:47:16,920 BUT IT'S IMPORTANT FOR THE 3933 02:47:16,920 --> 02:47:21,240 COMMITTEE THEY MENTION THIS. 3934 02:47:21,240 --> 02:47:26,560 I APPRECIATE THE PERSPECTIVES 3935 02:47:26,560 --> 02:47:30,760 THEY ARE HAVE BROUGHT NOTING 3936 02:47:30,760 --> 02:47:35,800 THAT THE SUBTLETIES AND 3937 02:47:35,800 --> 02:47:37,240 INTERSECTIONALITIES AND PEOPLE 3938 02:47:37,240 --> 02:47:39,480 NEED TO REPRESENT MULTIPLE 3939 02:47:39,480 --> 02:47:41,080 OPINIONS BUT IT'S IMPORTANT WE 3940 02:47:41,080 --> 02:47:42,480 GIVE THE PUBLIC SPEAKERS 3941 02:47:42,480 --> 02:47:46,320 INCLUDING THE PUBLIC COMMENTERS 3942 02:47:46,320 --> 02:47:50,440 THE RESPECT AND NOT TO ASSUME 3943 02:47:50,440 --> 02:47:55,240 THAT THEY ARE IMPUGNING THE 3944 02:47:55,240 --> 02:47:55,960 CURRENT MEMBERS OF THE COMMITTEE 3945 02:47:55,960 --> 02:47:57,960 AND WHAT ALISON AND OTHERS HAVE 3946 02:47:57,960 --> 02:47:59,280 VOICED TO ME OVER THE 3947 02:47:59,280 --> 02:48:01,400 INTERVENING SIX MONTHS IS THAT A 3948 02:48:01,400 --> 02:48:09,680 LOT OF A LOT OF THE DIALOGUE HAS 3949 02:48:09,680 --> 02:48:11,600 BEEN AROUND ADULTS WITH AUTISM 3950 02:48:11,600 --> 02:48:13,600 AND SELF-ADVOCATES AND I AGREE 3951 02:48:13,600 --> 02:48:15,760 WE HAVE SELF-ADVOCATES ON THE 3952 02:48:15,760 --> 02:48:20,720 COMMITTEE WITH VERY WIDE LEVELS 3953 02:48:20,720 --> 02:48:22,600 OF FUNCTIONING AND MS. SINGER 3954 02:48:22,600 --> 02:48:24,800 AND OTHERS HAVE BEEN GIVING 3955 02:48:24,800 --> 02:48:27,280 VOICE TO WHAT THEY PERCEIVE 3956 02:48:27,280 --> 02:48:29,960 RIGHT OR WRONG TO BE A RELATIVE 3957 02:48:29,960 --> 02:48:33,720 NEGLECT OF ISSUES THAT ARE 3958 02:48:33,720 --> 02:48:37,560 PLAGUING MANY MEMBERS OF OUR 3959 02:48:37,560 --> 02:48:40,680 COMMUNITY THAT AFFECT 3960 02:48:40,680 --> 02:48:41,800 INDIVIDUALS AND FAMILIES WHERE 3961 02:48:41,800 --> 02:48:43,920 PEOPLE WITH AUTISM ARE SO 3962 02:48:43,920 --> 02:48:45,320 PROFOUNDLY AFFECTED THEY ARE 3963 02:48:45,320 --> 02:48:46,200 UNABLE TO COMMUNICATE FOR 3964 02:48:46,200 --> 02:48:46,520 THEMSELVES. 3965 02:48:46,520 --> 02:48:50,920 AND WE HAVE SOME OF THOSE 3966 02:48:50,920 --> 02:48:52,320 ADVOCATES HERE AROUND THE TABLE 3967 02:48:52,320 --> 02:48:54,040 AND WE HAVE SOME OF THOSE 3968 02:48:54,040 --> 02:48:55,560 ADVOCATES IN OUR COMMUNITY. 3969 02:48:55,560 --> 02:49:01,400 THOSE VOICES ARE NOT ABSENT FROM 3970 02:49:01,400 --> 02:49:05,520 THE TABLE BUT I HAVE HEARD FROM 3971 02:49:05,520 --> 02:49:08,000 MANY IN THE COMMUNITY IS THEY'RE 3972 02:49:08,000 --> 02:49:09,520 CONCERNED THIS PARTICULAR 3973 02:49:09,520 --> 02:49:10,240 REITERATION OF THE IACC HAS NOT 3974 02:49:10,240 --> 02:49:12,240 YET ADDRESSED THOSE ISSUES AND 3975 02:49:12,240 --> 02:49:13,960 THAT'S THE VOICE THAT ALISON WAS 3976 02:49:13,960 --> 02:49:14,600 RAISING AT THAT POINT. 3977 02:49:14,600 --> 02:49:17,560 I WANT TO REASSURE EVERYONE THAT 3978 02:49:17,560 --> 02:49:19,320 I CONSIDER IT VERY IMPORTANT 3979 02:49:19,320 --> 02:49:21,280 THAT THIS COMMITTEE ADDRESS 3980 02:49:21,280 --> 02:49:23,120 ISSUES OF IMPORTANCE TO THE FULL 3981 02:49:23,120 --> 02:49:27,960 RANGE, THE FULL SPECTRUM OF 3982 02:49:27,960 --> 02:49:28,960 AUTISM AND WE WILL BE ADDRESSING 3983 02:49:28,960 --> 02:49:30,920 THE ISSUES OF IMPORTANCE TO 3984 02:49:30,920 --> 02:49:34,520 PARENTS AND FAMILIES FOR THOSE 3985 02:49:34,520 --> 02:49:37,520 WHO SUFFER WITH SUCH INTENSE 3986 02:49:37,520 --> 02:49:40,120 NEEDS THAT THEY ARE I THINK 3987 02:49:40,120 --> 02:49:43,400 INCORRECTLY PERCEIVING THIS 3988 02:49:43,400 --> 02:49:44,880 COMMITTEE HASN'T DEALT WITH 3989 02:49:44,880 --> 02:49:45,520 THOSE PROBLEMS OR DEALING WITH 3990 02:49:45,520 --> 02:49:46,200 THOSE ISSUES. 3991 02:49:46,200 --> 02:49:48,760 I WANT TO MAKE SURE THAT NUMBER 3992 02:49:48,760 --> 02:49:54,600 ONE WE HEAR ALISON AND OTHERS' 3993 02:49:54,600 --> 02:49:55,480 PERSPECTIVES AS BEING IMPORTANT 3994 02:49:55,480 --> 02:49:58,240 REMINDERS OF THE ISSUES WE HAVE 3995 02:49:58,240 --> 02:50:03,680 NOT YET GOTTEN TO AND US TO TAKE 3996 02:50:03,680 --> 02:50:19,040 UP THE CHARGE BEHIND THE WORDS 3997 02:50:19,040 --> 02:50:20,560 AND LET'S TAKE THOSE CONCERNS 3998 02:50:20,560 --> 02:50:22,000 AND ISSUES TO HEART. 3999 02:50:22,000 --> 02:50:26,600 I WANTED TO RESPOND DIRECTLY AND 4000 02:50:26,600 --> 02:50:28,200 I REALLY APPRECIATE EVERYONE 4001 02:50:28,200 --> 02:50:29,480 SPEAKING UP ON THIS TOPIC AND 4002 02:50:29,480 --> 02:50:34,120 I'M SURE MORE WILL HAVE MORE TO 4003 02:50:34,120 --> 02:50:34,320 SAY. 4004 02:50:34,320 --> 02:50:35,920 I'LL CEDE BACK TO YOU SUSAN AND 4005 02:50:35,920 --> 02:50:39,280 NEED TO GIVE NICOLE HER MINUTES 4006 02:50:39,280 --> 02:50:40,120 OF PUBLIC COMMENT. 4007 02:50:40,120 --> 02:50:40,440 THANK YOU. 4008 02:50:40,440 --> 02:50:41,400 >> THANK YOU. 4009 02:50:41,400 --> 02:50:43,120 SO YES, I'LL CIRCLE BACK TO 4010 02:50:43,120 --> 02:50:46,520 NICOLE NOW TO GIVE HER PUBLIC 4011 02:50:46,520 --> 02:50:46,720 COMMENT. 4012 02:50:46,720 --> 02:50:49,760 >> I'LL SAY THAT I FULLY AGREE 4013 02:50:49,760 --> 02:50:51,520 WITH WHAT DR. GORDON WAS SAYING 4014 02:50:51,520 --> 02:50:53,520 IS THAT YES, WE DO NEED TO BE 4015 02:50:53,520 --> 02:50:56,600 LOOKING AT THE ENTIRE SPECTRUM. 4016 02:50:56,600 --> 02:51:00,040 I HAVE A NEIGHBOR WHO HAS 4017 02:51:00,040 --> 02:51:01,720 PROFOUND AUTISM AND SHE IS A 4018 02:51:01,720 --> 02:51:04,000 FRIEND AND HER NEEDS ARE VERY 4019 02:51:04,000 --> 02:51:05,200 DIFFERENT FROM MINE BUT HER 4020 02:51:05,200 --> 02:51:08,400 NEEDS ARE JUST AS IMPORTANT AS 4021 02:51:08,400 --> 02:51:08,600 MINE. 4022 02:51:08,600 --> 02:51:11,960 HER NEEDS ARE MUCH HIGHER AND I 4023 02:51:11,960 --> 02:51:13,720 CANNOT SAY WHAT IT IS TO LIVE 4024 02:51:13,720 --> 02:51:15,080 HERE EXPERIENCE BECAUSE I AM NOT 4025 02:51:15,080 --> 02:51:17,080 HER AND AUTISM IS A SPECTRUM AND 4026 02:51:17,080 --> 02:51:20,840 I CARE ABOUT THE ENTIRE 4027 02:51:20,840 --> 02:51:21,120 SPECTRUM. 4028 02:51:21,120 --> 02:51:23,520 I CONSIDER MYSELF 4029 02:51:23,520 --> 02:51:24,160 NEURO-DIVERGENT BECAUSE AUTISM 4030 02:51:24,160 --> 02:51:28,480 SAY BIG SPECTRUM AND PART OF A 4031 02:51:28,480 --> 02:51:30,120 WIDER NEURO-DIVERGENT COMMUNITY. 4032 02:51:30,120 --> 02:51:31,840 THANK YOU FOR SAYING THAT. 4033 02:51:31,840 --> 02:51:33,360 I WOULD LIKE TO JUST READ OUT 4034 02:51:33,360 --> 02:51:37,000 WHAT I HAVE WRITTEN. 4035 02:51:37,000 --> 02:51:41,480 WHAT I WROTE IS I AM AUTISTIC 4036 02:51:41,480 --> 02:51:43,320 AND EXPERIENCED BEHAVIOR AND 4037 02:51:43,320 --> 02:51:47,120 WROTE AN ARTICLE BASED ON LIVED 4038 02:51:47,120 --> 02:51:47,840 EXPERIENCE BASED ON MISSING 4039 02:51:47,840 --> 02:51:49,520 AUTISTIC PERSONS AND THERE'S A 4040 02:51:49,520 --> 02:51:50,640 LINK ON THE GOVERNMENT WEBSITE. 4041 02:51:50,640 --> 02:51:52,360 I DO NOT AGREE WITH TRACKING 4042 02:51:52,360 --> 02:51:54,200 DEVICES UNLESS THEY CAN EASILY 4043 02:51:54,200 --> 02:51:56,320 BE REMOVED AND ARE CONSENTED TO. 4044 02:51:56,320 --> 02:51:59,920 THERE MAY BE CASES WHERE 4045 02:51:59,920 --> 02:52:00,920 NON-CONSENTING PERSON OR ADULT 4046 02:52:00,920 --> 02:52:06,320 WITH DEMENTIA OR PROFOUND AUTISM 4047 02:52:06,320 --> 02:52:08,400 MAY WEAR A MOVEABLE TRACKER BUT 4048 02:52:08,400 --> 02:52:10,520 THE POINT MUST BE TO IMPROVE 4049 02:52:10,520 --> 02:52:12,240 INDEPENDENCE AND THAT WILL LOOK 4050 02:52:12,240 --> 02:52:14,360 DIFFERENT FOR EVERY PERSON AND 4051 02:52:14,360 --> 02:52:17,240 SOME PEOPLE IT WILL BE A JOINT 4052 02:52:17,240 --> 02:52:19,680 DECISION BETWEEN CAREGIVER AND 4053 02:52:19,680 --> 02:52:20,320 INDIVIDUAL. 4054 02:52:20,320 --> 02:52:21,400 A TRACKING DEVICE SHOULD NOT BE 4055 02:52:21,400 --> 02:52:25,160 USED TO FURTHER RESTRICT A 4056 02:52:25,160 --> 02:52:27,280 PERSON THEREFORE THE DEFAULT FOR 4057 02:52:27,280 --> 02:52:28,480 PURCHASE MUST BE SELF-SIGN UP 4058 02:52:28,480 --> 02:52:32,120 FOR ADULTS AND ADULTS WHO MAY 4059 02:52:32,120 --> 02:52:34,800 HAVE MODERATE TO LOWER SUPPORT 4060 02:52:34,800 --> 02:52:36,360 NEEDS OBVIOUSLY. 4061 02:52:36,360 --> 02:52:38,040 I AM AUTISTIC AND LIVE IN 4062 02:52:38,040 --> 02:52:39,040 TORONTO, CANADA. 4063 02:52:39,040 --> 02:52:42,120 AND INTERESTED IN THE TOPIC OF 4064 02:52:42,120 --> 02:52:44,160 [INDISCERNIBLE] AND FROM THE 4065 02:52:44,160 --> 02:52:46,520 PERSPECTIVE OF AN AUTISTIC 4066 02:52:46,520 --> 02:52:49,120 PERSON AND INVOLVED IN A 4067 02:52:49,120 --> 02:52:54,240 RESEARCH PROJECT ON BEHAVIOR AND 4068 02:52:54,240 --> 02:52:56,960 WHILE TRACKING DEVICES DO NOT 4069 02:52:56,960 --> 02:52:59,520 ALWAYS PREVENT DROWNING DEATHS. 4070 02:52:59,520 --> 02:53:00,920 THE GRANT PROGRAM SHOULD BE USED 4071 02:53:00,920 --> 02:53:04,640 TO SUPPORT SWIMMING LESSONS AND 4072 02:53:04,640 --> 02:53:06,640 OTHER SPORTS PROGRAMS, OFTEN 4073 02:53:06,640 --> 02:53:09,560 THEY SWIM TO GET RID OF ANXIETY 4074 02:53:09,560 --> 02:53:11,880 AND PENT UP ENERGY AND TEACH 4075 02:53:11,880 --> 02:53:15,560 AUTISTIC PERSONS THE DANGERS OF 4076 02:53:15,560 --> 02:53:17,120 ELOPEMENT AND HEALTHY 4077 02:53:17,120 --> 02:53:19,520 ALTERNATIVE TO THE BEHAVIOR AND 4078 02:53:19,520 --> 02:53:21,120 MENTAL HEALTH PERSONS FOR 4079 02:53:21,120 --> 02:53:22,520 AUTISTIC PERSONS AND VARIOUS 4080 02:53:22,520 --> 02:53:25,640 SUPPORT NEEDS AND COMMUNICATION 4081 02:53:25,640 --> 02:53:26,680 METHODS INCLUDING AN AUTISTIC 4082 02:53:26,680 --> 02:53:29,360 CRISIS PHONE LINE THAT ACCOUNTS 4083 02:53:29,360 --> 02:53:32,080 FOR MISSPELLING AND SEXUAL 4084 02:53:32,080 --> 02:53:34,680 EDUCATION AND CONSENT EDUCATION 4085 02:53:34,680 --> 02:53:38,400 AND SAFE PLACE FOR AUTISTIC 4086 02:53:38,400 --> 02:53:41,000 PERSONS AND MANDATORY EDUCATION 4087 02:53:41,000 --> 02:53:43,560 FOR ALL FIRST RESPONDERS AND 4088 02:53:43,560 --> 02:53:44,560 HOUSING SUPPORTS FOR THOSE WHO 4089 02:53:44,560 --> 02:53:58,520 WANT TO LIVE INDEPENDENTLY. 4090 02:53:58,520 --> 02:54:06,640 >> SO PART TWO FROM MARINIKA, 4091 02:54:06,640 --> 02:54:08,480 PLEASE NOTE THERE'S MANY 4092 02:54:08,480 --> 02:54:09,320 CONSIDERED COGNITIVELY IMPAIRED 4093 02:54:09,320 --> 02:54:10,360 AND THIS IS CLEARLY NOT GOING TO 4094 02:54:10,360 --> 02:54:12,720 BE THE CASE FOR ALL PEOPLE. 4095 02:54:12,720 --> 02:54:15,560 BUT YET ANOTHER REASON WHY A ONE 4096 02:54:15,560 --> 02:54:18,120 SIZE FITS ALL APPROACH DOES NOT 4097 02:54:18,120 --> 02:54:22,120 FIT ANYONE NOR HELP ANYONE. 4098 02:54:22,120 --> 02:54:24,560 THE ICD11 PROVIDES MORE 4099 02:54:24,560 --> 02:54:25,520 DESCRIPTION AND COULD BE A 4100 02:54:25,520 --> 02:54:26,760 POSSIBILITY. 4101 02:54:26,760 --> 02:54:28,400 LASTLY, I'M NOT NECESSARILY 4102 02:54:28,400 --> 02:54:29,920 OPPOSED TO THE TERM PROFOUND 4103 02:54:29,920 --> 02:54:30,600 AUTISM. 4104 02:54:30,600 --> 02:54:32,600 A NAME IS A NAME. 4105 02:54:32,600 --> 02:54:36,920 WHAT I AM OPPOSED TO IS ASSUMING 4106 02:54:36,920 --> 02:54:38,120 SOME INDIVIDUALS DON'T MATTER TO 4107 02:54:38,120 --> 02:54:38,920 INDIVIDUALS THOSE DIFFERENT THAN 4108 02:54:38,920 --> 02:54:39,360 THEM. 4109 02:54:39,360 --> 02:54:40,040 THAT'S THE END OF THAT. 4110 02:54:40,040 --> 02:55:14,600 THANK YOU FOR SHARING. 4111 02:55:14,600 --> 02:55:16,520 >> THEY'RE ERASING THE LOVED 4112 02:55:16,520 --> 02:55:23,400 ONES BEFORE OUR EYES IF A 4113 02:55:23,400 --> 02:55:26,640 NON-AUTISTIC PARENT CAN'T HAVE A 4114 02:55:26,640 --> 02:55:28,080 PROFOUNDLY AUTISTIC CHILD. 4115 02:55:28,080 --> 02:55:29,520 WHAT MAKES ANYONE THINK WE'RE 4116 02:55:29,520 --> 02:55:30,640 ONLY SHARING OUR OWN PERSPECTIVE 4117 02:55:30,640 --> 02:55:32,120 BECAUSE WE ARE ON THE SPECTRUM 4118 02:55:32,120 --> 02:55:34,400 THAT MEANS APPARENTLY WE'RE 4119 02:55:34,400 --> 02:55:35,960 CAPABLE OF ALSO CARING ABOUT AND 4120 02:55:35,960 --> 02:55:40,080 ADVOCATING FOR THE PERSPECTIVE 4121 02:55:40,080 --> 02:55:41,360 OF OUR COLLEAGUES AND CHILDREN 4122 02:55:41,360 --> 02:55:45,080 AND THOSE WHO DIFFER FROM US. 4123 02:55:45,080 --> 02:55:45,520 >> THANK YOU. 4124 02:55:45,520 --> 02:56:20,440 SO NEXT WE WILL HEAR FROM JENNY. 4125 02:56:20,440 --> 02:56:22,000 MAYBE SHE STEPPED AWAY. 4126 02:56:22,000 --> 02:56:23,120 WE'LL HEAR FROM SAM CRANE. 4127 02:56:23,120 --> 02:56:25,320 >> SORRY, I HAD TO GET MYSELF 4128 02:56:25,320 --> 02:56:33,920 OFF MUTE AND BACK ON CAMERA. 4129 02:56:33,920 --> 02:56:35,080 I WANTED TO ADD THAT SOME OF THE 4130 02:56:35,080 --> 02:56:37,920 POINTS ARE VERY IMPORTANT AND 4131 02:56:37,920 --> 02:56:41,160 WHAT WE'RE MISSING HERE IS THE 4132 02:56:41,160 --> 02:56:47,560 FACT THAT PERCEPTIONS ASIDE, THE 4133 02:56:47,560 --> 02:56:48,480 AUTISTIC MEMBERS OF THIS 4134 02:56:48,480 --> 02:56:50,400 COMMITTEE HAVE OFTEN 4135 02:56:50,400 --> 02:56:58,280 CONSISTENTLY BEEN THE BRINGING 4136 02:56:58,280 --> 02:57:01,240 UP THE NEEDS FOR MORE LONG-TERM 4137 02:57:01,240 --> 02:57:03,320 SUPPORT AND COMMUNICATION 4138 02:57:03,320 --> 02:57:05,200 SUPPORTS AND MORE RESEARCH INTO 4139 02:57:05,200 --> 02:57:06,040 CO-OCCURRING MEDICAL CONDITIONS. 4140 02:57:06,040 --> 02:57:12,000 I THINK THAT WE REALLY NEED TO 4141 02:57:12,000 --> 02:57:13,320 START MOVING BEYOND JUST SAYING 4142 02:57:13,320 --> 02:57:15,560 AUTISTIC PEOPLE VERSUS 4143 02:57:15,560 --> 02:57:16,960 NON-AUTISTIC PARENTS. 4144 02:57:16,960 --> 02:57:22,480 MANY OF US ARE BOTH AS POINT 4145 02:57:22,480 --> 02:57:23,840 WAS POINTED OUT AND ONE OF THE 4146 02:57:23,840 --> 02:57:26,080 THINGS WE NEED TO THINK ABOUT IN 4147 02:57:26,080 --> 02:57:28,520 TERMS OF THE PROFOUND AUTISM 4148 02:57:28,520 --> 02:57:30,560 LABEL IT ACTUALLY OBSCURES WHAT 4149 02:57:30,560 --> 02:57:32,480 WE'RE TALKING ABOUT. 4150 02:57:32,480 --> 02:57:34,000 ONE OF THE THINGS I'M NOT 4151 02:57:34,000 --> 02:57:35,520 CONCERNED ABOUT TALKING ABOUT 4152 02:57:35,520 --> 02:57:36,960 PEOPLE WITH SIGNIFICANT SUPPORT 4153 02:57:36,960 --> 02:57:39,200 NEEDS BUT LET'S TALK ABOUT 4154 02:57:39,200 --> 02:57:41,200 PEOPLE WITH INTELLECTUAL 4155 02:57:41,200 --> 02:57:45,880 DISABILITIES AND PEOPLE WHO SELF 4156 02:57:45,880 --> 02:57:47,320 -HARM AND HAVE SIGNIFICANT 4157 02:57:47,320 --> 02:57:49,320 INDEPENDENT LIVING CHALLENGES 4158 02:57:49,320 --> 02:57:54,600 AND PEOPLE WHO NEED AAC. 4159 02:57:54,600 --> 02:57:56,720 THOSE ARE NOT ALWAYS SEEN 4160 02:57:56,720 --> 02:57:57,000 TOGETHER. 4161 02:57:57,000 --> 02:57:58,520 THERE'S A LOT OF PEOPLE WITH 4162 02:57:58,520 --> 02:58:00,520 MANY DIFFERENT COMBINATIONS OF 4163 02:58:00,520 --> 02:58:03,040 THESE AND SOMETIMES WHEN WE TALK 4164 02:58:03,040 --> 02:58:05,040 ABOUT JUST ONE ACCESS PROFOUND 4165 02:58:05,040 --> 02:58:07,120 VERSUS HIGH FUNCTIONING, WE'RE 4166 02:58:07,120 --> 02:58:08,480 NOT CAPTURING THE PEOPLE WE WANT 4167 02:58:08,480 --> 02:58:11,360 TO CAPTURE AND WE'RE NOT 4168 02:58:11,360 --> 02:58:12,040 NECESSARILY ADDRESSING ALL THE 4169 02:58:12,040 --> 02:58:20,120 PEOPLE WE WANT TO ADDRESS. 4170 02:58:20,120 --> 02:58:21,400 >> THANK YOU, SAM. 4171 02:58:21,400 --> 02:58:22,280 WE'LL TAKE THREE MORE COMMENTS 4172 02:58:22,280 --> 02:58:23,120 AND THEN TRY TO CLOSE THE 4173 02:58:23,120 --> 02:58:23,640 SESSION OUT. 4174 02:58:23,640 --> 02:58:40,520 NEXT IS PAUL WANG. 4175 02:58:40,520 --> 02:58:44,120 >> I WANT TO REGISTER MY REPORT 4176 02:58:44,120 --> 02:58:46,200 FOR THE COMMENTS SAM MADE AND I 4177 02:58:46,200 --> 02:58:49,600 WAS A CO-AUTHOR OF THE LANCET 4178 02:58:49,600 --> 02:58:50,040 REPORT. 4179 02:58:50,040 --> 02:58:52,880 AND THE THRUST OF ALISON'S 4180 02:58:52,880 --> 02:58:56,600 REMARKS ARE THE THRUST THAT IT'S 4181 02:58:56,600 --> 02:58:58,520 ESSENTIAL TO ENSURE SUPPORTS AND 4182 02:58:58,520 --> 02:59:00,400 SERVICES ARE MADE AVAILABLE AND 4183 02:59:00,400 --> 02:59:01,680 MADE ACCESS ABLE TO THOSE WITH 4184 02:59:01,680 --> 02:59:05,520 THESE EXTENSIVE SUPPORT AND 4185 02:59:05,520 --> 02:59:07,360 SERVICE NEEDS AND RESEARCH IS 4186 02:59:07,360 --> 02:59:08,240 FOCUSSED ON THIS PARTICULAR 4187 02:59:08,240 --> 02:59:08,440 GROUP. 4188 02:59:08,440 --> 02:59:11,520 THIS POINT IS INDEPENDENT OF 4189 02:59:11,520 --> 02:59:13,760 WHETHER I.Q. IS A PREDICTOR OF 4190 02:59:13,760 --> 02:59:15,160 WHO NEEDS EXTENSIVE SUPPORT 4191 02:59:15,160 --> 02:59:16,480 NEEDS. 4192 02:59:16,480 --> 02:59:18,160 IT'S INDEPENDENT OF WHAT THE 4193 02:59:18,160 --> 02:59:18,680 COMPOSITION OF WHAT THE 4194 02:59:18,680 --> 02:59:19,480 COMMITTEE MIGHT BE. 4195 02:59:19,480 --> 02:59:21,320 IT'S INDEPENDENT OF WHETHER YOU 4196 02:59:21,320 --> 02:59:23,120 LIKE THE TERM, QUOTE, PROFOUND 4197 02:59:23,120 --> 02:59:24,880 AUTISM AND WANT TO USE THAT 4198 02:59:24,880 --> 02:59:32,520 EXTENSIVELY OR NOT AND IT SHOULD 4199 02:59:32,520 --> 02:59:35,040 BE PART OF THE NEURODIVERSITY 4200 02:59:35,040 --> 02:59:36,560 PERSPECTIVE BECAUSE IT'S NOT 4201 02:59:36,560 --> 02:59:39,280 JUST THOSE MORE FUNCTIONAL BUT 4202 02:59:39,280 --> 02:59:40,520 DIVERSITY IS DIVERSE AND 4203 02:59:40,520 --> 02:59:41,680 INCLUDES THIS IMPORTANT GROUP 4204 02:59:41,680 --> 02:59:43,400 WHERE WE HAVE TO ENSURE SPORTS 4205 02:59:43,400 --> 02:59:46,520 AND SERVICES ARE MADE AVAILABLE. 4206 02:59:46,520 --> 02:59:47,320 THANK YOU. 4207 02:59:47,320 --> 02:59:48,920 -- SUPPORTS AND SERVICES ARE 4208 02:59:48,920 --> 02:59:49,520 MADE AVAILABLE. 4209 02:59:49,520 --> 02:59:50,640 >> THANK YOU, PAUL. 4210 02:59:50,640 --> 02:59:53,480 NEXT ALICIA HALLADAY. 4211 02:59:53,480 --> 02:59:54,760 >> I WON'T TAKE UP TOO MUCH TIME 4212 02:59:54,760 --> 02:59:56,600 BECAUSE I THINK THERE'S 4213 02:59:56,600 --> 02:59:58,280 MISUNDERSTANDING ABOUT THE TERM 4214 02:59:58,280 --> 02:59:59,200 PROFOUND AUTISM AND WE'RE LUCKY 4215 02:59:59,200 --> 03:00:02,560 TO HAVE CATHY LORD WHO LED THE 4216 03:00:02,560 --> 03:00:05,680 COMMISSION TO EXPLAIN WHAT 4217 03:00:05,680 --> 03:00:06,800 EXACTLY THIS LABEL IS AND HOW IT 4218 03:00:06,800 --> 03:00:08,920 IS TO BE USED. 4219 03:00:08,920 --> 03:00:10,520 I WILL ALSO SAY THAT WHILE I 4220 03:00:10,520 --> 03:00:14,720 JUST JOINED AS A MEMBER, I'VE 4221 03:00:14,720 --> 03:00:18,320 BEEN GOING TO IACC MEETINGS 4222 03:00:18,320 --> 03:00:19,240 BEFORE COVID AND WATCHING 4223 03:00:19,240 --> 03:00:22,520 MEETINGS FOR YEARS AND SOME OF 4224 03:00:22,520 --> 03:00:25,000 THEE ISSUES AROUND THINGS LIKE 4225 03:00:25,000 --> 03:00:28,000 EMPLOYMENT AND HOUSING HAVE BEEN 4226 03:00:28,000 --> 03:00:30,120 DEBATED ON THESE IACC MEETINGS 4227 03:00:30,120 --> 03:00:32,880 AND IN FACT THIS LABEL OF 4228 03:00:32,880 --> 03:00:36,440 PROFOUND AUTISM SEEKS TO MAYBE 4229 03:00:36,440 --> 03:00:39,480 RESOLVE SOME OF THE CONTROVERSY 4230 03:00:39,480 --> 03:00:41,560 AROUND APPROPRIATE HOUSING AND 4231 03:00:41,560 --> 03:00:43,240 APPROPRIATE EMPLOYMENT OPTIONS. 4232 03:00:43,240 --> 03:00:44,960 ALSO, QUICKLY, I WANT TO ADDRESS 4233 03:00:44,960 --> 03:00:46,800 THE COMMENTS THAT WERE MADE 4234 03:00:46,800 --> 03:00:48,800 ABOUT SCREEN TIME AND I WANT TO 4235 03:00:48,800 --> 03:00:50,280 PUT A PLUG IN FOR SOMETHING 4236 03:00:50,280 --> 03:00:54,200 CALLED AUTISM NAVIGATOR AND BABY 4237 03:00:54,200 --> 03:00:54,480 NAVIGATOR. 4238 03:00:54,480 --> 03:00:58,200 THIS IS A PROJECT LED BY FLORIDA 4239 03:00:58,200 --> 03:01:01,600 STATE UNIVERSITY AND PROVIDES 4240 03:01:01,600 --> 03:01:03,120 WEBINARS TWICE A MONTH TO 4241 03:01:03,120 --> 03:01:04,320 FAMILIES AND PROFESSIONALS ABOUT 4242 03:01:04,320 --> 03:01:06,000 NOT JUST DETECTING EARLY SIGNED 4243 03:01:06,000 --> 03:01:10,760 OF AUTISM BUT PROVIDING 4244 03:01:10,760 --> 03:01:12,280 ONE-ON-ONE SUPPORT FROM PARENTS 4245 03:01:12,280 --> 03:01:15,520 TO INFANTS AND TODDLERS HOW TO 4246 03:01:15,520 --> 03:01:18,800 INCORPORATE SKILLS AROUND THINGS 4247 03:01:18,800 --> 03:01:22,320 LIKE COMMUNICATION, FOLLOWING 4248 03:01:22,320 --> 03:01:24,320 DIRECTIONS, SOCIAL INTERACTION 4249 03:01:24,320 --> 03:01:25,800 AND IT'S DONE MOBILY BUT DOES 4250 03:01:25,800 --> 03:01:30,440 NOT RELY ON SCREEN TIME. 4251 03:01:30,440 --> 03:01:32,320 PERHAPS WE CAN HAVE A FURTHER 4252 03:01:32,320 --> 03:01:35,600 CONVERSATION ABOUT IT BUT I 4253 03:01:35,600 --> 03:01:38,880 WHOLEHEARTEDLY AGREE SOME OF THE 4254 03:01:38,880 --> 03:01:43,240 PREEMPTIVE MOVES MAY ALTER THE 4255 03:01:43,240 --> 03:01:43,560 TRAJECTORY. 4256 03:01:43,560 --> 03:01:51,320 >> THANK YOU. 4257 03:01:51,320 --> 03:01:54,640 OUR LAST COMMENT. 4258 03:01:54,640 --> 03:01:57,640 >> I'M IVANOVA SMITH FROM 4259 03:01:57,640 --> 03:02:01,040 WASHINGTON STATE AND I WANTED TO 4260 03:02:01,040 --> 03:02:02,960 SAY AS AN IACC AND SELF-ADVOCATE 4261 03:02:02,960 --> 03:02:06,440 I'M VERY PASSIONATE ABOUT MAKING 4262 03:02:06,440 --> 03:02:09,680 IT SO AUTISTICS ARE TREATED WITH 4263 03:02:09,680 --> 03:02:09,960 RESPECT. 4264 03:02:09,960 --> 03:02:13,000 MY CONCERN WITH THE COMMENTS 4265 03:02:13,000 --> 03:02:15,680 ABOUT PROMOTING THIS PROFOUND 4266 03:02:15,680 --> 03:02:18,240 AUTISM IDEA IS THAT IT'S USED TO 4267 03:02:18,240 --> 03:02:20,320 RESTRICT PEOPLE'S LIVES AND WILL 4268 03:02:20,320 --> 03:02:26,680 BE USED TO JUSTIFY 4269 03:02:26,680 --> 03:02:28,520 INSTITUTIONALIZATION AND 4270 03:02:28,520 --> 03:02:33,320 RESTRICT PEOPLE'S CIVIL RIGHTS 4271 03:02:33,320 --> 03:02:35,520 BASED ON THAT DIAGNOSIS. 4272 03:02:35,520 --> 03:02:39,520 WHEN I WAS BORN, I LEARNED FIRST 4273 03:02:39,520 --> 03:02:41,400 HAND HOW THESE DIAGNOSES ARE 4274 03:02:41,400 --> 03:02:43,680 USED TO PUT PEOPLE IN 4275 03:02:43,680 --> 03:02:45,000 INSTITUTIONS AND SEGREGATE 4276 03:02:45,000 --> 03:02:46,160 PEOPLE IN WORK AND SEGREGATE 4277 03:02:46,160 --> 03:02:48,000 PEOPLE FROM THE COMMUNITY. 4278 03:02:48,000 --> 03:02:52,120 THAT IS MY CONCERN WITH THE 4279 03:02:52,120 --> 03:02:55,040 PROFOUND AUTISM IDEA IS IT WOULD 4280 03:02:55,040 --> 03:02:58,240 BE USED TO RESTRICT PEOPLE'S 4281 03:02:58,240 --> 03:02:58,480 RIGHTS. 4282 03:02:58,480 --> 03:03:01,920 HOW WOULD WE MAKE SURE THAT 4283 03:03:01,920 --> 03:03:03,040 PROFOUND AUTISM WILL NOT BE USED 4284 03:03:03,040 --> 03:03:04,640 IN THAT WAY TO RESTRICT PEOPLE'S 4285 03:03:04,640 --> 03:03:14,560 RIGHTS AND MAKE IT SO PEOPLE ARE 4286 03:03:14,560 --> 03:03:15,560 ADMINISTRATION L 4287 03:03:15,560 --> 03:03:16,200 INSTITUTIONALIZED AND I DON'T 4288 03:03:16,200 --> 03:03:17,680 THINK ANYBODY SHOULD BE 4289 03:03:17,680 --> 03:03:24,760 ADMINISTRATIONALIZED AND -- 4290 03:03:24,760 --> 03:03:26,520 INSTITUTIONALIZED AND RESTRICTED 4291 03:03:26,520 --> 03:03:28,240 BECAUSE THAT IS HOW THESE TERMS 4292 03:03:28,240 --> 03:03:32,040 HAVE ALWAYS BEEN USED 4293 03:03:32,040 --> 03:03:33,440 HISTORICALLY. 4294 03:03:33,440 --> 03:03:36,800 THE FUNCTION LABELS USED TO 4295 03:03:36,800 --> 03:03:37,800 SEGREGATE AND PUT THEM IN 4296 03:03:37,800 --> 03:03:39,680 INSTITUTIONS AND NOT GIVE THEM 4297 03:03:39,680 --> 03:03:41,600 AN EQUAL EDUCATION SAYING PEOPLE 4298 03:03:41,600 --> 03:03:43,480 DON'T NEED AN EQUAL EDUCATION. 4299 03:03:43,480 --> 03:03:44,520 SAYING PEOPLE DON'T NEED THIS 4300 03:03:44,520 --> 03:03:49,440 ORE -- OR THAT. 4301 03:03:49,440 --> 03:03:51,440 THAT'S NOT HOW WE SHOULD USE THE 4302 03:03:51,440 --> 03:03:54,400 TERM AND IF THAT'S THE REASON WE 4303 03:03:54,400 --> 03:03:56,400 WANT THE TERM IT WILL HURT 4304 03:03:56,400 --> 03:03:58,240 PEOPLE AND THE PROFOUNDLY 4305 03:03:58,240 --> 03:03:59,360 AUTISTIC. 4306 03:03:59,360 --> 03:04:01,080 I RATHER WE MAKE SURE ANY 4307 03:04:01,080 --> 03:04:02,680 FUNCTION LABEL WE USE WILL NOT 4308 03:04:02,680 --> 03:04:04,680 RESTRICT PEOPLE'S CIVIL RIGHTS 4309 03:04:04,680 --> 03:04:10,160 AND WOULD NOT FORCE PEOPLE TO BE 4310 03:04:10,160 --> 03:04:11,400 PUT IN AN INSTITUTION. 4311 03:04:11,400 --> 03:04:12,440 THAT'S MY CONCERN. 4312 03:04:12,440 --> 03:04:13,960 WE DON'T WANT THIS LANGUAGE TO 4313 03:04:13,960 --> 03:04:18,640 BE USED TO RESTRICT PEOPLE'S 4314 03:04:18,640 --> 03:04:20,840 RIGHTS AND NOT JUST 4315 03:04:20,840 --> 03:04:24,680 INSTITUTIONALIZATION BUT 4316 03:04:24,680 --> 03:04:26,640 GUARDIANSHIP, EDUCATION, EVEN 4317 03:04:26,640 --> 03:04:29,520 EDUCATION ON HOW OUR BODIES ARE. 4318 03:04:29,520 --> 03:04:32,360 I DON'T WANT PROFOUND AUTISM BE 4319 03:04:32,360 --> 03:04:36,800 USED TO SAY YOU ARE MENTALLY A 4320 03:04:36,800 --> 03:04:38,200 CHILD SO YOU DON'T GET TO DO 4321 03:04:38,200 --> 03:04:39,160 ADULT THINGS BECAUSE OF THE 4322 03:04:39,160 --> 03:04:39,360 LABEL. 4323 03:04:39,360 --> 03:04:40,400 I WANT TO MAKE SURE THE LABEL 4324 03:04:40,400 --> 03:04:40,800 WILL NOT DO THAT. 4325 03:04:40,800 --> 03:04:44,920 THANK YOU. 4326 03:04:44,920 --> 03:04:48,160 >> IF I MIGHT, I WANT TO INJECT, 4327 03:04:48,160 --> 03:04:50,200 THANK YOU VERY MUCH FOR THAT 4328 03:04:50,200 --> 03:04:51,920 PERSPECTIVE AND IT IS REALLY 4329 03:04:51,920 --> 03:04:55,120 IMPORTANT WE NOT USE LABELS 4330 03:04:55,120 --> 03:04:56,120 IMPROPERLY, HOWEVER, PLEASE IF 4331 03:04:56,120 --> 03:05:01,440 SOMEONE ELSE ON THE COMMITTEE 4332 03:05:01,440 --> 03:05:11,920 WOULD LIKE TO SAY SOMETHING AND 4333 03:05:11,920 --> 03:05:15,880 IF ANYONE WANTS TO BRING UP, 4334 03:05:15,880 --> 03:05:16,920 IVANOVA YOUR COMMENT BRINGS TO 4335 03:05:16,920 --> 03:05:18,920 HEART MS. SINGER'S COMMENTS IN 4336 03:05:18,920 --> 03:05:22,520 THAT THERE ARE SOME INDIVIDUALS 4337 03:05:22,520 --> 03:05:23,840 ON THE SPECTRUM AND IT'S QUITE A 4338 03:05:23,840 --> 03:05:24,000 LOT. 4339 03:05:24,000 --> 03:05:26,360 I DON'T KNOW IF IT'S 50% OR 20%, 4340 03:05:26,360 --> 03:05:31,720 BUT THERE'S MANY INDIVIDUALS WHO 4341 03:05:31,720 --> 03:05:36,440 NEED TO BE IN PLACES TO GET THE 4342 03:05:36,440 --> 03:05:39,120 SUPPORT TO ENABLE THEM TO LIVE 4343 03:05:39,120 --> 03:05:39,680 THEIR LIVES. 4344 03:05:39,680 --> 03:05:42,120 THEY NEED TO BE IN PLACES YOU 4345 03:05:42,120 --> 03:05:46,560 MIGHT CALL INSTITUTIONS. 4346 03:05:46,560 --> 03:05:49,680 THEY NEED TO BE UNDER CARE 4347 03:05:49,680 --> 03:05:54,160 INCLUDING THE TIMES NEED TO HAVE 4348 03:05:54,160 --> 03:05:54,440 TRUSTEES. 4349 03:05:54,440 --> 03:06:00,400 >> CAN WE TAKE A BREAK? 4350 03:06:00,400 --> 03:06:02,680 >> I RESPECTFULLY DISAGREE. 4351 03:06:02,680 --> 03:06:05,240 THEY SAID THAT ABOUT ME. 4352 03:06:05,240 --> 03:06:06,680 >> I'M NOT SUGGESTING -- 4353 03:06:06,680 --> 03:06:08,640 >> I DON'T WANT ANYONE TO BE SAD 4354 03:06:08,640 --> 03:06:08,920 ABOUT THAT. 4355 03:06:08,920 --> 03:06:11,640 >> I'M NOT SUGGESTING. 4356 03:06:11,640 --> 03:06:13,640 IVANOV, PLEASE, GAVE YOU THE 4357 03:06:13,640 --> 03:06:14,040 OPPORTUNITY. 4358 03:06:14,040 --> 03:06:15,560 PLEASE GIVE ME THE OPPORTUNITY 4359 03:06:15,560 --> 03:06:16,480 TO SPEAK. 4360 03:06:16,480 --> 03:06:20,160 PLEASE GIVE THE THE OPPORTUNITY 4361 03:06:20,160 --> 03:06:20,880 TO RESPECT AS WELL. 4362 03:06:20,880 --> 03:06:23,680 I'M NOT SUGGESTING YOU'RE ONE OF 4363 03:06:23,680 --> 03:06:25,360 THOSE PEOPLE I'M SUGGESTING 4364 03:06:25,360 --> 03:06:26,640 THERE'S SOME PEOPLE AROUND THE 4365 03:06:26,640 --> 03:06:28,000 TABLE CARING FOR INDIVIDUALS WHO 4366 03:06:28,000 --> 03:06:29,680 DO NEED THAT LEVEL OF CARE AND 4367 03:06:29,680 --> 03:06:32,800 THOSE VOICES NEED TO BE ABLE TO 4368 03:06:32,800 --> 03:06:42,880 BE EXPRESSED AROUND THIS TABLE. 4369 03:06:42,880 --> 03:06:51,280 AND TO SAY NO INDIVIDUAL WITH 4370 03:06:51,280 --> 03:06:52,960 DEFICITS THERE ARE THOSE WHO'S 4371 03:06:52,960 --> 03:06:54,280 DEFICITS AND CARE NEEDS ARE 4372 03:06:54,280 --> 03:06:55,320 SIGNIFICANT ENOUGH THEY NEED 4373 03:06:55,320 --> 03:06:55,840 THAT CARE. 4374 03:06:55,840 --> 03:06:57,920 I'M NOT PRETENDING TO TELL YOU 4375 03:06:57,920 --> 03:07:00,080 WHAT PERCENTAGE IS AND I'M NOT 4376 03:07:00,080 --> 03:07:02,720 SUGGESTING, IVANOV, YOU ARE ONE 4377 03:07:02,720 --> 03:07:03,920 OF THEM BUT SUGGESTING THAT'S A 4378 03:07:03,920 --> 03:07:05,320 VOICE WE NEED TO BE ABLE TO HEAR 4379 03:07:05,320 --> 03:07:07,480 AROUND THE TABLE AND IF WE DON'T 4380 03:07:07,480 --> 03:07:08,360 ALLOW THAT VOICE AROUND THE 4381 03:07:08,360 --> 03:07:11,040 TABLE WE'RE NOT DOING OUR DUE 4382 03:07:11,040 --> 03:07:11,880 DILIGENCE. 4383 03:07:11,880 --> 03:07:13,360 >> NO ONE IS PREVENTING THEM 4384 03:07:13,360 --> 03:07:17,960 FROM BEING HEARD, JOSH. 4385 03:07:17,960 --> 03:07:19,840 WE'RE DISAGREEING, VERY 4386 03:07:19,840 --> 03:07:22,480 RESPECTFULLY AND POLITELY AND 4387 03:07:22,480 --> 03:07:24,520 GETTING NEGATIVE FROM YOU ABOUT 4388 03:07:24,520 --> 03:07:25,920 SPEAK OUR TRUTH. 4389 03:07:25,920 --> 03:07:28,320 >> I DON'T MEAN TO BE GIVING 4390 03:07:28,320 --> 03:07:30,120 NEGATIVE FEEDBACK ABOUT YOU 4391 03:07:30,120 --> 03:07:32,160 SPEAKING YOUR TRUTH. 4392 03:07:32,160 --> 03:07:34,400 AS A SAID I VALUE THE VIEWS 4393 03:07:34,400 --> 03:07:35,520 TREMENDOUSLY BUT POINTING OUT OF 4394 03:07:35,520 --> 03:07:38,240 THE VOICES WE'VE HEARD TODAY, WE 4395 03:07:38,240 --> 03:07:39,400 HAVEN'T HEARD THAT OTHER SIDE 4396 03:07:39,400 --> 03:07:42,640 AND IT'S NOT BECAUSE IT DOESN'T 4397 03:07:42,640 --> 03:07:46,520 EXIST. 4398 03:07:46,520 --> 03:07:52,000 >> YOU ALL ASSUMING. 4399 03:07:52,000 --> 03:07:53,680 >> I WANT TO SAY. 4400 03:07:53,680 --> 03:07:55,560 >> ANYONE WHO NEEDS TO TAKE A 4401 03:07:55,560 --> 03:07:57,160 BREAK FEEL FREE TO DO SO BUT I 4402 03:07:57,160 --> 03:07:58,480 DONT WANT TO CUT THE 4403 03:07:58,480 --> 03:07:59,920 CONVERSATION SHORT. 4404 03:07:59,920 --> 03:08:03,480 >> I WANT US TO UNDERSTAND THIS 4405 03:08:03,480 --> 03:08:07,000 ISN'T ABOUT WHO HAS DIFFERENT 4406 03:08:07,000 --> 03:08:07,320 EXPERIENCES. 4407 03:08:07,320 --> 03:08:09,760 MANY OF US HAVE DIRECT 4408 03:08:09,760 --> 03:08:11,080 EXPERIENCES WITH PEOPLE WITH 4409 03:08:11,080 --> 03:08:13,040 EXTREMELY HIGH SUPPORT NEEDS. 4410 03:08:13,040 --> 03:08:14,480 THIS IS A POLITICAL DISAGREEMENT 4411 03:08:14,480 --> 03:08:17,400 BEING RECAST AS A DISAGREEMENT 4412 03:08:17,400 --> 03:08:18,560 BETWEEN PEOPLE WITH DIFFERENT 4413 03:08:18,560 --> 03:08:20,280 EXPERIENCES AND I DON'T THINK 4414 03:08:20,280 --> 03:08:22,520 THAT IT IS ABOUT DIFFERENT 4415 03:08:22,520 --> 03:08:22,960 EXPERIENCES. 4416 03:08:22,960 --> 03:08:25,800 WE HAVE MANY PEOPLE WHO HAVE 4417 03:08:25,800 --> 03:08:27,280 SUPPORTED PEOPLE WITH EXTREMELY 4418 03:08:27,280 --> 03:08:28,280 HIGH SUPPORT NEEDS IN THE 4419 03:08:28,280 --> 03:08:31,760 COMMUNITY USING HOME AND 4420 03:08:31,760 --> 03:08:34,520 COMMUNITY-BASED SERVICES, 24/7 4421 03:08:34,520 --> 03:08:37,680 SUPPORTS IN THE COMMUNITY. 4422 03:08:37,680 --> 03:08:40,320 SO SAYING THESE SUPPORTS HAVE TO 4423 03:08:40,320 --> 03:08:42,640 BE DELIVERED IN AN INSTITUTION I 4424 03:08:42,640 --> 03:08:44,280 THINK IS A POLICY DISAGREEMENT 4425 03:08:44,280 --> 03:08:45,200 NOT A DISAGREEMENT OVER WHO'S 4426 03:08:45,200 --> 03:08:56,800 NEEDS ARE BEING REPRESENTED. 4427 03:08:56,800 --> 03:08:58,440 >> THIS IS JENNIFER JOHNSON WITH 4428 03:08:58,440 --> 03:09:00,960 ACL AND WANT TO ECHO SAM'S 4429 03:09:00,960 --> 03:09:02,440 COMMENTS WHAT WE'RE TALKING 4430 03:09:02,440 --> 03:09:04,600 ABOUT IS REALLY WE LACK THE 4431 03:09:04,600 --> 03:09:06,520 ADEQUATE HOME AND 4432 03:09:06,520 --> 03:09:07,680 COMMUNITY-BASED SERVICES AND 4433 03:09:07,680 --> 03:09:10,520 SUPPORTS FOR INDIVIDUALS TO NOT 4434 03:09:10,520 --> 03:09:12,360 ONLY BE ABLE TO SPEAK FOR 4435 03:09:12,360 --> 03:09:14,600 THEMSELVES AND COMMUNICATE IN A 4436 03:09:14,600 --> 03:09:16,480 WAY THAT PEOPLE CAN UNDERSTAND 4437 03:09:16,480 --> 03:09:16,680 THEM. 4438 03:09:16,680 --> 03:09:18,520 I THINK WE MAKE A MISTAKE WHEN 4439 03:09:18,520 --> 03:09:20,520 WE SAY WHAT WE MIGHT WANT TO 4440 03:09:20,520 --> 03:09:22,520 CHARACTERIZE PEOPLE AS BEING 4441 03:09:22,520 --> 03:09:24,440 NON-VERBAL THEY'RE STILL 4442 03:09:24,440 --> 03:09:26,600 COMMUNICATING IN ONE WAY, SHAPE 4443 03:09:26,600 --> 03:09:28,440 OR FORM AND DON'T AT THIS POINT 4444 03:09:28,440 --> 03:09:30,480 IN TIME ACCEPT THE VARIOUS WAYS 4445 03:09:30,480 --> 03:09:32,680 IN WHICH PEOPLE CAN COMMUNICATE 4446 03:09:32,680 --> 03:09:33,760 AND THIS COMMITTEE ISN'T 4447 03:09:33,760 --> 03:09:35,280 STRUCTURED IN A WAY THAT ALLOWS 4448 03:09:35,280 --> 03:09:36,280 FOR THAT COMMUNICATION TO OCCUR. 4449 03:09:36,280 --> 03:09:38,840 I DO THINK WE NEED TO BE CAREFUL 4450 03:09:38,840 --> 03:09:40,120 ABOUT HOW WE'RE CHARACTERIZING 4451 03:09:40,120 --> 03:09:42,720 THESE THINGS AND ALSO 4452 03:09:42,720 --> 03:09:45,520 ACKNOWLEDGE THAT THE WAY WE'RE 4453 03:09:45,520 --> 03:09:46,200 CHARACTERIZING THIS IN THE 4454 03:09:46,200 --> 03:09:47,840 CURRENT CONTEXT OF THE SERVICES 4455 03:09:47,840 --> 03:09:49,920 AND SUPPORTS BEING MADE 4456 03:09:49,920 --> 03:09:51,520 AVAILABLE TO PEOPLE TO BE ABLE 4457 03:09:51,520 --> 03:09:54,320 TO LIVE INDEPENDENTLY IN THE 4458 03:09:54,320 --> 03:09:56,320 COMMUNITY AND THAT IS VERY 4459 03:09:56,320 --> 03:09:57,760 DIFFERENT IN EACH STATE AND 4460 03:09:57,760 --> 03:10:00,120 DIFFERENT IN EACH TERRITORY. 4461 03:10:00,120 --> 03:10:02,600 AND IT IS AS SAM SAID, VERY MUCH 4462 03:10:02,600 --> 03:10:04,040 DRIVEN BY POLITICS AND WHAT 4463 03:10:04,040 --> 03:10:06,280 WE'RE WILLING TO INVEST IN TERMS 4464 03:10:06,280 --> 03:10:08,800 OF INSTITUTIONAL CARE VERSUS 4465 03:10:08,800 --> 03:10:10,240 HOME AND COMMUNITY-BASED 4466 03:10:10,240 --> 03:10:10,480 SERVICE. 4467 03:10:10,480 --> 03:10:12,520 I THINK WE NEED TO BE VERY 4468 03:10:12,520 --> 03:10:16,120 CAREFUL WHEN WE ARE TRYING TO 4469 03:10:16,120 --> 03:10:18,600 CHARACTERIZE THAT INDIVIDUALS 4470 03:10:18,600 --> 03:10:20,520 WE'RE TALKING ABOUT THE WAY THEY 4471 03:10:20,520 --> 03:10:22,520 CAN PARTICIPATE AND REPRESENT 4472 03:10:22,520 --> 03:10:24,000 THEMSELVES IN THESE 4473 03:10:24,000 --> 03:10:25,320 CONVERSATIONS AS IT RELATES TO 4474 03:10:25,320 --> 03:10:27,120 THE CURRENT LEVEL OF SERVICES 4475 03:10:27,120 --> 03:10:29,000 AND SUPPORTS THEY'RE GETTING AND 4476 03:10:29,000 --> 03:10:31,000 THAT'S ALSO DRIVEN BY THE 4477 03:10:31,000 --> 03:10:31,280 RESEARCH. 4478 03:10:31,280 --> 03:10:33,920 I JUST WANT TO ADD THAT AND ECHO 4479 03:10:33,920 --> 03:10:35,320 SAM'S COMMENTS ON THAT REGARD. 4480 03:10:35,320 --> 03:10:35,720 >> VERY GOOD. 4481 03:10:35,720 --> 03:10:43,120 AND JENNIFER, LET ME BE CLEAR, I 4482 03:10:43,120 --> 03:10:47,280 WAS CLEAR TO STATE THOSE WERE 4483 03:10:47,280 --> 03:10:49,400 THOSE THAT NEED THE LEVEL OF 4484 03:10:49,400 --> 03:10:51,840 CARE SHE WAS INFERRING BY THE 4485 03:10:51,840 --> 03:10:53,520 TERM INSTITUTION. 4486 03:10:53,520 --> 03:10:55,200 >> JUST TO RESPECTFULLY 4487 03:10:55,200 --> 03:10:56,320 DISAGREE, THE REASON THEY NEED 4488 03:10:56,320 --> 03:10:57,080 THE INSTITUTIONAL SERVICES AT 4489 03:10:57,080 --> 03:10:59,040 THIS POINT IN TIME IS BECAUSE WE 4490 03:10:59,040 --> 03:11:01,720 DON'T HAVE ADEQUATE HOME AND 4491 03:11:01,720 --> 03:11:02,280 COMMUNITY-BASED SERVICES. 4492 03:11:02,280 --> 03:11:04,520 AS SAM SAID PEOPLE CAN BE SERVED 4493 03:11:04,520 --> 03:11:05,600 IN THE COMMUNITY AND WE'VE SEEN 4494 03:11:05,600 --> 03:11:06,040 PEOPLE -- 4495 03:11:06,040 --> 03:11:08,280 >> JENNIFER, I'M NOT DISAGREEING 4496 03:11:08,280 --> 03:11:09,360 WITH YOU. 4497 03:11:09,360 --> 03:11:15,800 >> THAT'S THE WAY IT'S COMING 4498 03:11:15,800 --> 03:11:15,960 OFF. 4499 03:11:15,960 --> 03:11:18,800 >> I APOLOGIZE IF THAT'S THE 4500 03:11:18,800 --> 03:11:19,120 IMPLICATION. 4501 03:11:19,120 --> 03:11:20,760 I WAS TRYING TO BE CLEAR IT'S 4502 03:11:20,760 --> 03:11:22,560 THE LEVEL OF NEED AND NOT THE 4503 03:11:22,560 --> 03:11:28,880 VENUE OF CARE. 4504 03:11:28,880 --> 03:11:32,160 PERHAPS WE SHOULD TAKE MATTHEW 4505 03:11:32,160 --> 03:11:37,920 AND NETTA. 4506 03:11:37,920 --> 03:11:42,680 >> AND JENNY MAE FAN SENT A 4507 03:11:42,680 --> 03:11:43,800 COMMENT IN AS WELL. 4508 03:11:43,800 --> 03:11:44,560 >> RETURNING TO THE RESEARCH 4509 03:11:44,560 --> 03:11:45,640 WHICH IS THE CHARGE AND FOCUS OF 4510 03:11:45,640 --> 03:11:48,280 THE COMMITTEE IS ADVISING THE 4511 03:11:48,280 --> 03:11:49,120 FEDERAL GOVERNMENT ON THE 4512 03:11:49,120 --> 03:11:51,600 RESEARCH PORTFOLIO AND WHERE IT 4513 03:11:51,600 --> 03:11:52,840 SHOULD HEAD, WHICH THEN RELATES 4514 03:11:52,840 --> 03:11:56,520 TO SERVICE AND POLICY AND 4515 03:11:56,520 --> 03:11:58,760 ULTIMATELY POLITICS. 4516 03:11:58,760 --> 03:12:03,520 I THINK THAT IT'S IMPORTANT THE 4517 03:12:03,520 --> 03:12:04,200 LANCET COMMISSION WHICH SPENT 4518 03:12:04,200 --> 03:12:06,040 ALMOST THREE YEARS WORKING ON 4519 03:12:06,040 --> 03:12:11,800 THIS, ONE OF THE FEW VERY CLEAR 4520 03:12:11,800 --> 03:12:13,000 RECOMMENDATIONS THEY MADE WAS 4521 03:12:13,000 --> 03:12:14,600 THIS DISTINCTION ABOUT PROFOUND 4522 03:12:14,600 --> 03:12:16,960 AUTISM AND THE PURPOSE, I THINK, 4523 03:12:16,960 --> 03:12:22,720 WAS TO DRIVE MORE RESEARCH AND 4524 03:12:22,720 --> 03:12:23,640 ULTIMATELY MORE SERVICE. 4525 03:12:23,640 --> 03:12:25,520 AND IT'S IMPORTANT TO POINT OUT 4526 03:12:25,520 --> 03:12:26,680 THE AUTISM RESEARCH WORLD HAS 4527 03:12:26,680 --> 03:12:27,920 TURNED ON ITS HEAD IN THE LAST 4528 03:12:27,920 --> 03:12:28,600 20 YEARS. 4529 03:12:28,600 --> 03:12:33,760 SO WE PUBLISHED A PAPER IN 2018 4530 03:12:33,760 --> 03:12:37,240 IN JAD WHERE WE ANALYZED ALL THE 4531 03:12:37,240 --> 03:12:38,520 TREATMENT STUDIES IN AUTISM THAT 4532 03:12:38,520 --> 03:12:41,440 WE COULD GET OUR HANDS ON FROM 4533 03:12:41,440 --> 03:12:43,120 1990 TO 2013. 4534 03:12:43,120 --> 03:12:45,320 THERE WERE 367 STUDIES AND WE 4535 03:12:45,320 --> 03:12:48,040 CAREFULLY ANALYZED THEM FOR 4536 03:12:48,040 --> 03:12:50,560 INCLUSION OF PEOPLE WHO HAD 4537 03:12:50,560 --> 03:12:52,960 EITHER INTELLECTUAL DISABILITY, 4538 03:12:52,960 --> 03:12:54,400 MINIMAL VERBAL ABILITY, WHICH IS 4539 03:12:54,400 --> 03:12:56,520 HOW WE DEFINED IT AT THAT TIME 4540 03:12:56,520 --> 03:12:58,160 OR LOWER ADAPTIVE FUNCTIONING. 4541 03:12:58,160 --> 03:13:01,320 WHICH IS VERY SIMILAR TO THE 4542 03:13:01,320 --> 03:13:02,640 PROFOUND AUTISM DEFINITION 4543 03:13:02,640 --> 03:13:04,360 PROPOSED BY THE LANCET AND THE 4544 03:13:04,360 --> 03:13:06,480 FINDING WAS SIMPLE WHICH IS THAT 4545 03:13:06,480 --> 03:13:09,200 IT WENT FROM ALMOST ALL THOSE 4546 03:13:09,200 --> 03:13:13,440 TREATMENT STUDIES INCLUDING THAT 4547 03:13:13,440 --> 03:13:16,320 GROUP TO ABOUT A THIRD IN 23 4548 03:13:16,320 --> 03:13:20,960 YEARS INCLUDING THEM SO IN OTHER 4549 03:13:20,960 --> 03:13:22,960 WORDS TWO-THIRDS OF THE RESEARCH 4550 03:13:22,960 --> 03:13:25,080 STUDIES DONE DID IN THE INCLUDE 4551 03:13:25,080 --> 03:13:26,640 INDIVIDUALS WITH WHAT WOULD 4552 03:13:26,640 --> 03:13:27,760 CURRENTLY BE CALLED PROFOUND 4553 03:13:27,760 --> 03:13:28,000 AUTISM. 4554 03:13:28,000 --> 03:13:29,920 I THINK THAT'S A VERY IMPORTANT 4555 03:13:29,920 --> 03:13:33,440 CONTEMPT TO HAVE IN MIND AND 4556 03:13:33,440 --> 03:13:36,160 PERHAPS WHY WE SEE SOME OF THE 4557 03:13:36,160 --> 03:13:39,720 REACTION OF PEOPLE FEELING THEIR 4558 03:13:39,720 --> 03:13:42,680 NEEDS TO BE SOME GREATER -- THIS 4559 03:13:42,680 --> 03:13:45,800 IS HAS NOW BECOME AN UNDER 4560 03:13:45,800 --> 03:13:47,320 RESEARCHED AND UNDER REPRESENTED 4561 03:13:47,320 --> 03:13:49,560 GROUP WHICH IS A GREAT IRONY 4562 03:13:49,560 --> 03:13:50,480 GIVEN WHERE AUTISM STARTED 4563 03:13:50,480 --> 03:13:52,320 THEREFORE A NEED TO FOCUS ON 4564 03:13:52,320 --> 03:13:55,880 THIS GROUP AND I WOULD SUGGEST 4565 03:13:55,880 --> 03:13:58,520 AN OBJECTIVE IN THE NEW 4566 03:13:58,520 --> 03:14:00,520 STRATEGIC PLAN SHOULD BE ON 4567 03:14:00,520 --> 03:14:01,640 RESEARCH SERVICES AND POLICY FOR 4568 03:14:01,640 --> 03:14:02,320 THOSE WITH PROFOUND AUTISM. 4569 03:14:02,320 --> 03:14:05,680 THANK YOU. 4570 03:14:05,680 --> 03:14:07,320 >> THANK YOU, MATTHEW. 4571 03:14:07,320 --> 03:14:10,440 LAST BUT NOT LEFT, YETTA, 4572 03:14:10,440 --> 03:14:10,680 PLEASE. 4573 03:14:10,680 --> 03:14:13,080 >> I WAS GOING TO SAY THAT I 4574 03:14:13,080 --> 03:14:13,480 THINK -- 4575 03:14:13,480 --> 03:14:17,360 >> I'M SORRY, NICOLE, THE 4576 03:14:17,360 --> 03:14:19,120 DISCUSSION PERIOD IS RESERVED 4577 03:14:19,120 --> 03:14:20,360 FOR MEMBERS OF THE COMMITTEE 4578 03:14:20,360 --> 03:14:20,600 ITSELF. 4579 03:14:20,600 --> 03:14:24,120 MY APOLOGIES. 4580 03:14:24,120 --> 03:14:24,520 YETTA. 4581 03:14:24,520 --> 03:14:27,120 >> THANKS EVERYONE FOR YOUR 4582 03:14:27,120 --> 03:14:27,360 COMMENTS. 4583 03:14:27,360 --> 03:14:31,520 AS A PARENT OF A YOUNG ADULT WHO 4584 03:14:31,520 --> 03:14:32,680 HAS AUTISM INTELLECTUAL 4585 03:14:32,680 --> 03:14:36,920 DISABILITY THIS IS VERY 4586 03:14:36,920 --> 03:14:38,680 EMOTIONAL, RIGHT. 4587 03:14:38,680 --> 03:14:42,840 I'M NOT GOING PRETEND TO NOAH IT 4588 03:14:42,840 --> 03:14:44,520 IS TO BE SOMEONE WHO IS AUTISTIC 4589 03:14:44,520 --> 03:14:47,520 BUT I THINK AT THE ROOST ALL OF 4590 03:14:47,520 --> 03:14:52,560 THIS IS ACCESS TO SERVICES. 4591 03:14:52,560 --> 03:14:54,520 MAKING SURE THAT AUTISTIC 4592 03:14:54,520 --> 03:14:56,280 INDIVIDUALS GET THE LEVEL OF 4593 03:14:56,280 --> 03:14:58,160 SUPPORT THEY NEED AND THAT IS 4594 03:14:58,160 --> 03:15:01,120 WHY WE WERE SELECTED TO BE ON 4595 03:15:01,120 --> 03:15:02,960 THIS COMMITTEE TO GIVE THAT 4596 03:15:02,960 --> 03:15:06,640 VOICE TO TAKE OUR LIVED 4597 03:15:06,640 --> 03:15:10,960 EXPERIENCE AND MAKE SURE THAT WE 4598 03:15:10,960 --> 03:15:12,760 ARE THINKING ABOUT THE COMMUNITY 4599 03:15:12,760 --> 03:15:13,600 AS A WHOLE. 4600 03:15:13,600 --> 03:15:16,520 SO I VALUE EVERYONE THAT IS HERE 4601 03:15:16,520 --> 03:15:22,520 AND I VALUE EVERYONE WHO -- IT 4602 03:15:22,520 --> 03:15:25,280 IS EITHER PARENT OR INDIVIDUAL , 4603 03:15:25,280 --> 03:15:25,680 RIGHT. 4604 03:15:25,680 --> 03:15:27,400 WE ALL HAVE THESE EXPERIENCES 4605 03:15:27,400 --> 03:15:30,520 AND THEY HAVE VEILED. 4606 03:15:30,520 --> 03:15:32,520 THE CHALLENGE IS MAKING SURE AND 4607 03:15:32,520 --> 03:15:34,520 WHAT WE ARE CHARGED WITH IS 4608 03:15:34,520 --> 03:15:39,960 MAKING SURE THE RESEARCH IS 4609 03:15:39,960 --> 03:15:41,560 REFLECTIVE OF WHERE THE NEEDS 4610 03:15:41,560 --> 03:15:45,800 AND WHERE WE NEED TO BE 4611 03:15:45,800 --> 03:15:46,200 FOCUSSED. 4612 03:15:46,200 --> 03:15:50,200 WHO'S HIGH FUNCTIONING, WHO'S 4613 03:15:50,200 --> 03:15:50,520 NON-SPEAKING. 4614 03:15:50,520 --> 03:15:53,320 IT GETS TO BE OVERWHELMING AND 4615 03:15:53,320 --> 03:15:54,040 FRUSTRATING TO BE QUITE HONEST 4616 03:15:54,040 --> 03:16:00,440 FOR ME SPECIFICALLY. 4617 03:16:00,440 --> 03:16:05,680 I DON'T DO THIS WORK TO SUPPORT 4618 03:16:05,680 --> 03:16:06,680 MY SON. 4619 03:16:06,680 --> 03:16:09,240 TO SUPPORT OTHERS OR WORK IN 4620 03:16:09,240 --> 03:16:10,000 COMMUNITY AND PARTNER WITH 4621 03:16:10,000 --> 03:16:11,560 AUTISTIC INDIVIDUALS FOR THERE 4622 03:16:11,560 --> 03:16:15,080 TO BE THIS FIGHTING. 4623 03:16:15,080 --> 03:16:18,320 I REALLY WANT US TO TAKE A DEEP 4624 03:16:18,320 --> 03:16:20,760 BREATH, WHICH I'M DOING RIGHT 4625 03:16:20,760 --> 03:16:25,120 NOW AND WANT US TO REALLY FIGURE 4626 03:16:25,120 --> 03:16:30,840 OUT WHERE WE NEED TO BE 4627 03:16:30,840 --> 03:16:32,280 FOCUSSING OUR ATTENTION OF WHAT 4628 03:16:32,280 --> 03:16:33,800 IT IS WE NEED IT GET DONE 4629 03:16:33,800 --> 03:16:35,400 BECAUSE I WANT TO ENSURE THAT 4630 03:16:35,400 --> 03:16:38,360 WHEN I CLOSE MY EYES, THAT MY 4631 03:16:38,360 --> 03:16:39,480 SON IS SAFE. 4632 03:16:39,480 --> 03:16:43,720 THAT ALL OF YOU ARE SAFE. 4633 03:16:43,720 --> 03:16:45,360 THAT YOU FEEL LIKE YOU ARE A 4634 03:16:45,360 --> 03:16:47,480 MEANINGFUL PART OF SOCIETY AND 4635 03:16:47,480 --> 03:16:48,880 YOU FEEL INCLUDED. 4636 03:16:48,880 --> 03:16:50,120 JUST LIKE I'M SOMEONE WHO IS NOT 4637 03:16:50,120 --> 03:16:53,840 AND WANT THAT FOR MYSELF. 4638 03:16:53,840 --> 03:16:55,120 THAT'S WHY I SERVE. 4639 03:16:55,120 --> 03:16:58,040 I BELIEVE THAT'S WHY WE ALL 4640 03:16:58,040 --> 03:16:58,520 SERVE. 4641 03:16:58,520 --> 03:17:02,520 AND SO I JUST WANT EVERYONE TO 4642 03:17:02,520 --> 03:17:04,520 BRING IT BACK AND FOCUS ON WHAT 4643 03:17:04,520 --> 03:17:06,920 IT IS WE NEED TO DO AND IT'S 4644 03:17:06,920 --> 03:17:08,120 HEALTHY TO AGREE AND DISAGREE 4645 03:17:08,120 --> 03:17:11,480 BUT I DON'T WANT US TO LOSE 4646 03:17:11,480 --> 03:17:11,880 FOCUS. 4647 03:17:11,880 --> 03:17:14,040 I APPRECIATE YOU ALL'S COMMENTS 4648 03:17:14,040 --> 03:17:16,000 AND THANK YOU FOR GIVING ME A 4649 03:17:16,000 --> 03:17:16,920 MOMENT TO SPEAK. 4650 03:17:16,920 --> 03:17:18,960 >> THANK YOU, YETTA, THAT'S A 4651 03:17:18,960 --> 03:17:22,560 WONDERFUL WAY TO CONCLUDE THIS. 4652 03:17:22,560 --> 03:17:24,560 THERE WERE A LOT OF POWERFUL 4653 03:17:24,560 --> 03:17:26,280 STATEMENTS AND A LOT OF EMOTION 4654 03:17:26,280 --> 03:17:29,640 BUT I THINK A LOT OF POINTS WERE 4655 03:17:29,640 --> 03:17:29,920 WELL SAID. 4656 03:17:29,920 --> 03:17:33,880 AND WE NEED UNFORTUNATELY TO 4657 03:17:33,880 --> 03:17:35,960 TRANSITION NOW TO THE NEXT 4658 03:17:35,960 --> 03:17:38,080 SESSION. 4659 03:17:38,080 --> 03:17:40,360 WE WERE MEANT TO START AT 1:45. 4660 03:17:40,360 --> 03:17:43,200 WE'RE ABOUT 15 MINUTES LATE. 4661 03:17:43,200 --> 03:17:44,920 WITH APOLOGIES TO THOSE WHO 4662 03:17:44,920 --> 03:17:45,800 WOULD LIKE A BREAK BETWEEN THIS 4663 03:17:45,800 --> 03:17:52,320 AND THE NEXT SESSION, WE'LL MOVE 4664 03:17:52,320 --> 03:17:55,560 RIGHT INTO THE NEXT SESSION. 4665 03:17:55,560 --> 03:17:59,840 WE'LL COME BACK TO THE LANCET 4666 03:17:59,840 --> 03:18:01,120 COMMISSION REPORT BUT NOW WE'LL 4667 03:18:01,120 --> 03:18:04,520 TURN TO A PRESENTATION FROM 4668 03:18:04,520 --> 03:18:09,760 DR. MATTHEW MAENNER FROM THE 4669 03:18:09,760 --> 03:18:13,600 CENTERS FOR DISEASE CONTROL AND 4670 03:18:13,600 --> 03:18:14,280 PREVENTION, THEIR SURVEILLANCE 4671 03:18:14,280 --> 03:18:14,600 TEAM. 4672 03:18:14,600 --> 03:18:17,400 WILL SHARE THE LATEST UPDATES 4673 03:18:17,400 --> 03:18:22,520 FROM CDC ON AUTISM PREVALENCE. 4674 03:18:22,520 --> 03:18:30,920 DR. MAENNER. 4675 03:18:30,920 --> 03:18:37,120 >> THANK YOU FOR ALLOWING ME TO 4676 03:18:37,120 --> 03:19:05,120 PRESENT ON FROM THE NETWORK. 4677 03:19:05,120 --> 03:19:08,080 THERE WERE TWO SURVEILLANCES 4678 03:19:08,080 --> 03:19:11,520 FROM 2018 I'LL REVIEW THE MAIN 4679 03:19:11,520 --> 03:19:12,240 FINDINGS AND DESCRIBE THE 4680 03:19:12,240 --> 03:19:14,200 CURRENT STATE OF THE NETWORK. 4681 03:19:14,200 --> 03:19:21,160 THE NETWORK SAY POPULATION-BASED 4682 03:19:21,160 --> 03:19:24,320 SURVEILLANCE SYSTEM THAT 4683 03:19:24,320 --> 03:19:29,880 MONITORS CHILDREN WITH AUTISM 4684 03:19:29,880 --> 03:19:33,520 AND REPORTS ON AUTISM EVERY TWO 4685 03:19:33,520 --> 03:19:36,440 YEARS AND IN GREEN ARE THE 11 4686 03:19:36,440 --> 03:19:38,440 PARTICIPATING SITES AND WHILE 4687 03:19:38,440 --> 03:19:39,600 THIS ISN'T A NATIONALLY 4688 03:19:39,600 --> 03:19:44,720 REPRESENTATIVE SAMPLE IT COVERS 4689 03:19:44,720 --> 03:19:51,400 A LARGE POPULATION AND COMPOSED 4690 03:19:51,400 --> 03:19:53,920 OF GEOGRAPHICALLY AND 4691 03:19:53,920 --> 03:19:54,640 DEMOGRAPHICALLY DIVERSE 4692 03:19:54,640 --> 03:19:56,080 POPULATIONS AND THIS IS THE 4693 03:19:56,080 --> 03:19:59,000 CURRENT NETWORK TO THE 2016 4694 03:19:59,000 --> 03:19:59,240 NETWORK. 4695 03:19:59,240 --> 03:20:03,600 THERE'S STILL 11 SITES OVERALL 4696 03:20:03,600 --> 03:20:05,160 IT'S A COMPETITIVE FUNDING 4697 03:20:05,160 --> 03:20:05,400 PROCESS. 4698 03:20:05,400 --> 03:20:08,280 CDC EXPAND THE TRACKING OF EARLY 4699 03:20:08,280 --> 03:20:09,520 AUTISM IDENTIFICATION AMONG 4700 03:20:09,520 --> 03:20:11,320 4-YEAR-OLD CHILDREN TO ALL OF 4701 03:20:11,320 --> 03:20:13,320 THE SITES WHILE PREVIOUSLY IT 4702 03:20:13,320 --> 03:20:17,120 WAS IN SUB REGIONS OF ONLY SIX 4703 03:20:17,120 --> 03:20:20,240 SITES SO THIS TRIPLED THE TOTAL 4704 03:20:20,240 --> 03:20:22,480 POPULATION MONITORED FOR THIS 4705 03:20:22,480 --> 03:20:23,120 ACTIVITY. 4706 03:20:23,120 --> 03:20:25,120 ALL THE SITES TRACK AUTISM 4707 03:20:25,120 --> 03:20:25,800 PREVALENCE AMONG 8-YEAR-OLD 4708 03:20:25,800 --> 03:20:28,040 CHILDREN AND A NEW ACTIVITY 4709 03:20:28,040 --> 03:20:29,600 HOPEFULLY COMING OUT LATER THIS 4710 03:20:29,600 --> 03:20:31,560 YEAR IS FOLLOWING UP ON CHILDREN 4711 03:20:31,560 --> 03:20:33,680 AT AGE 16 THAT WERE PREVIOUSLY 4712 03:20:33,680 --> 03:20:42,120 ASCERTAINED AT AGE 8. 4713 03:20:42,120 --> 03:20:44,840 THE NEW REPORT USES A NEW 4714 03:20:44,840 --> 03:20:46,280 DEFINITION BASED ON INFORMATION 4715 03:20:46,280 --> 03:20:47,600 COLLECT FROM HEALTH, EDUCATION 4716 03:20:47,600 --> 03:20:52,200 AND SERVICE RECORDS FROM 4717 03:20:52,200 --> 03:20:53,480 MULTIPLE COMMUNITY. 4718 03:20:53,480 --> 03:20:54,640 THEY WERE CONSIDERED TO HAVE 4719 03:20:54,640 --> 03:21:02,600 AUTISM IT IF THEY LIVED IN THE 4720 03:21:02,600 --> 03:21:04,080 SURVEILLANCE AND HAD A 4721 03:21:04,080 --> 03:21:06,320 CLASSIFICATION OF AUTISM OR AN 4722 03:21:06,320 --> 03:21:08,040 AUTISM ICD CODE A MEDICAL 4723 03:21:08,040 --> 03:21:08,680 BILLING CODE. 4724 03:21:08,680 --> 03:21:13,400 NEW THIS YEAR AND JUST FOR THE 4725 03:21:13,400 --> 03:21:16,520 4-YEAR-OLD CHILDREN THE ADDM 4726 03:21:16,520 --> 03:21:17,880 NETWORK ASCERTAINED WHERE 4727 03:21:17,880 --> 03:21:20,640 CHILDREN DID NOT MEET THE AUTISM 4728 03:21:20,640 --> 03:21:22,680 BUT HAD A DOCUMENTED SUSPICION 4729 03:21:22,680 --> 03:21:28,040 OF AUTISM IN THEIR RECORDS. 4730 03:21:28,040 --> 03:21:30,040 THIS WAS THE RESULT OF INTENSIVE 4731 03:21:30,040 --> 03:21:31,160 PLANNING AND EVALUATION AND 4732 03:21:31,160 --> 03:21:34,200 ANALYSIS AND DESCRIBE IN A PAPER 4733 03:21:34,200 --> 03:21:36,320 IN THE AMERICAN JOURNAL OF 4734 03:21:36,320 --> 03:21:38,480 EPIDEMIOLOGY LAST APRIL. 4735 03:21:38,480 --> 03:21:40,760 IT COMPARES THE NEW CASE 4736 03:21:40,760 --> 03:21:43,040 DEFINITION TO THE PREVIOUS ONE 4737 03:21:43,040 --> 03:21:45,280 AND PRIOR TWO SURVEILLANCE YEARS 4738 03:21:45,280 --> 03:21:47,080 IN ALL SITUATIONS INDICATORS 4739 03:21:47,080 --> 03:21:51,120 WERE SIMILAR SOMETIMES UNCHANGED 4740 03:21:51,120 --> 03:22:01,520 USING EITHER CASE DEFINITION 4741 03:22:01,520 --> 03:22:03,920 THIS CHANGE OVER TIME AND THE 4742 03:22:03,920 --> 03:22:05,160 NEW CASE REQUIRES LESS DATA 4743 03:22:05,160 --> 03:22:06,240 COLLECTION AND SIMPLIFIES THE 4744 03:22:06,240 --> 03:22:07,600 PROCESS FOR MANAGING AND 4745 03:22:07,600 --> 03:22:09,080 REVIEWING INFORMATION. 4746 03:22:09,080 --> 03:22:12,960 THIS ALLOWED THE ADDM NETWORK TO 4747 03:22:12,960 --> 03:22:18,440 DISSEMINATE RESULTS FASTER AND 4748 03:22:18,440 --> 03:22:20,680 FUND MORE SITES AND IN 4749 03:22:20,680 --> 03:22:22,720 RETROSPECT WAS MORE ROBUST TO 4750 03:22:22,720 --> 03:22:24,680 BARRIERS ACCESSING DATA CAUSED 4751 03:22:24,680 --> 03:22:26,600 BY THE PANDEMIC. 4752 03:22:26,600 --> 03:22:28,520 PERHAPS MOST IMPORTANT THE NEW 4753 03:22:28,520 --> 03:22:30,480 APPROACH MORE TRANSPARENT 4754 03:22:30,480 --> 03:22:31,720 REFLECTED CHILDREN ARE BEING 4755 03:22:31,720 --> 03:22:33,160 EVALUATED AND SERVED IN THEIR 4756 03:22:33,160 --> 03:22:34,560 COMMUNITIES WHICH ALIGNS WITH 4757 03:22:34,560 --> 03:22:40,040 THE PURPOSE OF PUBLIC HEALTH 4758 03:22:40,040 --> 03:22:41,240 SURVEILLANCE TO INFORM AND 4759 03:22:41,240 --> 03:22:42,920 ULTIMATELY IMPROVE PRACTICE. 4760 03:22:42,920 --> 03:22:46,320 WITH THAT BACKGROUND HERE'S SOME 4761 03:22:46,320 --> 03:22:48,680 FINDINGS ON THE REPORT ON AUTISM 4762 03:22:48,680 --> 03:22:50,440 FINDINGS AMONG 8-YEAR-OLD 4763 03:22:50,440 --> 03:22:50,680 CHILDREN. 4764 03:22:50,680 --> 03:22:54,640 THIS SHOWED THE OVERALL AUTISM 4765 03:22:54,640 --> 03:22:58,840 PREVALENCE FOR EVERY ADDM 4766 03:22:58,840 --> 03:23:02,520 SURVEILLANCE YEAR AND IT 4767 03:23:02,520 --> 03:23:04,640 CORRESPONDS TO ONE IN 44 4768 03:23:04,640 --> 03:23:05,320 CHILDREN. 4769 03:23:05,320 --> 03:23:08,120 WHILE THERE IS A GENERAL UPWARD 4770 03:23:08,120 --> 03:23:09,800 TREND OVER TIME IT'S IMPORTANT 4771 03:23:09,800 --> 03:23:11,920 TO REMEMBER SOME PARTICIPATING 4772 03:23:11,920 --> 03:23:12,560 COMMUNITIES CHANGE FROM YEAR TO 4773 03:23:12,560 --> 03:23:14,680 YEAR. 4774 03:23:14,680 --> 03:23:15,920 THESE BARS SHOW AUTISM 4775 03:23:15,920 --> 03:23:18,640 PREVALENCE OBSERVED AT EACH OF 4776 03:23:18,640 --> 03:23:21,160 THE 11 SITES AND AS IN THE PAST 4777 03:23:21,160 --> 03:23:22,400 THERE'S CONSIDERABLY VARIABLE 4778 03:23:22,400 --> 03:23:27,080 CHANGE FROM 1.7% IN MISSOURI TO 4779 03:23:27,080 --> 03:23:28,600 3.9% IN THE CALIFORNIA SITE. 4780 03:23:28,600 --> 03:23:31,720 THE GREEN AREAS OF THE BARS 4781 03:23:31,720 --> 03:23:37,840 INDICATE CHILDREN THAT HAVE A 4782 03:23:37,840 --> 03:23:39,520 DOCUMENTED AUTISM DIAGNOSIS AND 4783 03:23:39,520 --> 03:23:42,320 THE BLUE IS CHILDREN WHO WERE 4784 03:23:42,320 --> 03:23:44,840 CLASSIFIED IN AN AUTISM SPECIAL 4785 03:23:44,840 --> 03:23:47,160 EDUCATION PROGRAM AND PURPLE ARE 4786 03:23:47,160 --> 03:23:49,720 CHILDREN WITH AN ICD CODE AND 4787 03:23:49,720 --> 03:23:52,120 THE GROPE IS A SMALL PERCENT OF 4788 03:23:52,120 --> 03:23:56,120 ALL CHILDREN WHICH IS 4789 03:23:56,120 --> 03:23:57,400 REASSURING. 4790 03:23:57,400 --> 03:23:58,920 THE REPORT HAVE MORE INFORMATION 4791 03:23:58,920 --> 03:23:59,880 SHOWING HOW CHILDREN WERE 4792 03:23:59,880 --> 03:24:07,920 ASCERTAINED IN EACH SITE AND CAN 4793 03:24:07,920 --> 03:24:12,760 HELP IN EVALUATING SITE TO SITE 4794 03:24:12,760 --> 03:24:14,880 AND THIS SHOWS DIFFERENCES BY 4795 03:24:14,880 --> 03:24:17,000 RACE AND ETHNICITY. 4796 03:24:17,000 --> 03:24:18,480 THERE WAS LITTLE DIFFERENT 4797 03:24:18,480 --> 03:24:23,440 BETWEEN BLACK, WHITE, ASIAN 4798 03:24:23,440 --> 03:24:25,240 PACIFIC ISLANDER AND HISPANIC 4799 03:24:25,240 --> 03:24:28,240 CHILDREN AND SOME REPORTED LOWER 4800 03:24:28,240 --> 03:24:29,000 PREVALENCE AMONG HISPANIC 4801 03:24:29,000 --> 03:24:30,120 CHILDREN COMPARED TO WHITE OR 4802 03:24:30,120 --> 03:24:32,320 BLACK CHILDREN AND FOR THE FIRST 4803 03:24:32,320 --> 03:24:35,680 TIME THE ADDM NETWORK INCLUDED 4804 03:24:35,680 --> 03:24:37,120 AN ESTIMATE AMONG AMERICAN 4805 03:24:37,120 --> 03:24:38,680 INDIAN AND ALASKAN NATIVE 4806 03:24:38,680 --> 03:24:40,920 CHILDREN AND IT WAS A LITTLE 4807 03:24:40,920 --> 03:24:42,240 HIGHER THAN SOME GROUPS BUT ALSO 4808 03:24:42,240 --> 03:24:44,680 A SMALL POPULATION SO IT HAS A 4809 03:24:44,680 --> 03:24:45,400 BIT LESS PRECISION THAN THE 4810 03:24:45,400 --> 03:24:52,040 OTHER GROUPS. 4811 03:24:52,040 --> 03:24:57,960 THE ADDM NETWORK ALSO COLLECTS 4812 03:24:57,960 --> 03:25:05,800 OR ADAPTIVE TEST INFORMATION AND 4813 03:25:05,800 --> 03:25:08,360 35% HAD AN I.Q. LESS THAN 70 AND 4814 03:25:08,360 --> 03:25:09,760 THE PROPORTIONS AMONG BOYS AND 4815 03:25:09,760 --> 03:25:10,960 GIRLS ARE SIMILAR BUT THERE 4816 03:25:10,960 --> 03:25:14,320 CONTINUES TO BE A HIGHER 4817 03:25:14,320 --> 03:25:15,640 PROPORTION OF BLACK CHILDREN 4818 03:25:15,640 --> 03:25:18,040 WITH AUTISM CLASSIFIED AS HAVING 4819 03:25:18,040 --> 03:25:18,760 AN INTELLECTUAL DISABILITY 4820 03:25:18,760 --> 03:25:20,920 COMPARED TO BLACK OR WHITE 4821 03:25:20,920 --> 03:25:21,440 CHILDREN WITH AUTISM. 4822 03:25:21,440 --> 03:25:27,000 THE REASON IS NOT FULLY 4823 03:25:27,000 --> 03:25:29,440 UNDERSTOOD AND COULD BE FROM 4824 03:25:29,440 --> 03:25:32,200 INEQUITIES IN ASCERTAINMENT OR 4825 03:25:32,200 --> 03:25:32,480 SERVICES. 4826 03:25:32,480 --> 03:25:37,400 THIS FIGURE IS A SIMPLE ANALYSIS 4827 03:25:37,400 --> 03:25:38,400 COMPARING OUTCOMES BY 4828 03:25:38,400 --> 03:25:39,440 NEIGHBORHOOD. 4829 03:25:39,440 --> 03:25:42,680 PREVIOUS ADDM STUDIES HAVE SHOWN 4830 03:25:42,680 --> 03:25:45,680 A POSITIVE ASSOCIATION BETWEEN 4831 03:25:45,680 --> 03:25:46,320 NEIGHBORHOODS SOCIO ECONOMIC 4832 03:25:46,320 --> 03:25:47,960 INDICATORS IN AUTISM BUT AS YOU 4833 03:25:47,960 --> 03:25:49,960 CAN SEE HERE WITH THE SITES 4834 03:25:49,960 --> 03:25:51,320 THERE'S NOT A CONSISTENT PATTERN 4835 03:25:51,320 --> 03:25:55,480 WE WOULD HAVE SEEN IN THE PAST. 4836 03:25:55,480 --> 03:25:56,520 MORE FOCUSSED ANALYSIS WOULD BE 4837 03:25:56,520 --> 03:26:18,200 HELPFUL. 4838 03:26:18,200 --> 03:26:22,040 THIS SHOWS THE EARLIEST MEDIAN 4839 03:26:22,040 --> 03:26:23,920 AGE AND THERE HASN'T BEEN MUCH 4840 03:26:23,920 --> 03:26:28,400 CHANGE AND PEOPLE INTERPRETED TO 4841 03:26:28,400 --> 03:26:30,640 MEAN THERE'S NO PROGRESS ABOUT 4842 03:26:30,640 --> 03:26:33,280 THE IT MAY BE A MISLEADING 4843 03:26:33,280 --> 03:26:35,320 INTERPRETATION DUE TO THE METRIC 4844 03:26:35,320 --> 03:26:35,680 BEING USED. 4845 03:26:35,680 --> 03:26:37,840 IN A PAPER THAT CAME OUT THE 4846 03:26:37,840 --> 03:26:41,520 WEEK BEFORE THANKSGIVING WHICH 4847 03:26:41,520 --> 03:26:46,320 WAS THE WEEK BEFORE THE OTHER 4848 03:26:46,320 --> 03:26:49,560 ADDM REPORTS, DR. SHAW COMPARED 4849 03:26:49,560 --> 03:26:52,000 DIFFERENT METRICS OF MEASURING 4850 03:26:52,000 --> 03:26:53,880 EARLY AUTISM IDENTIFICATION AND 4851 03:26:53,880 --> 03:26:58,520 SO SUMMARIZE THE MEDIAN AGE 4852 03:26:58,520 --> 03:27:00,000 MEASURED USED IN THE PAST SHOWS 4853 03:27:00,000 --> 03:27:05,920 VERY ALSO CHANGE OVER TIME WHERE 4854 03:27:05,920 --> 03:27:09,520 REPRESENTING THIS AS CUMULATIVE 4855 03:27:09,520 --> 03:27:10,800 INCIDENT OF AUTISM HAS 4856 03:27:10,800 --> 03:27:13,880 QUADRUPLED OVER THE SAME TIME 4857 03:27:13,880 --> 03:27:14,600 PERIOD. 4858 03:27:14,600 --> 03:27:16,480 FURTHERMORE, REPORTING 4859 03:27:16,480 --> 03:27:18,680 ACCUMULATIVE INCIDENT REVEALS 4860 03:27:18,680 --> 03:27:21,120 RACIAL DISPARITIES MASKED WITH 4861 03:27:21,120 --> 03:27:22,480 THE MEDIAN AGE MEASURE. 4862 03:27:22,480 --> 03:27:23,960 THERE'S MORE IN THE PAPER BUT 4863 03:27:23,960 --> 03:27:25,680 OUTLINES THE REASONS WHY WE 4864 03:27:25,680 --> 03:27:28,480 CHOSE A METRIC THAT'S SENSITIVE 4865 03:27:28,480 --> 03:27:30,520 TO SHOWING CHANGE OVER TIME AND 4866 03:27:30,520 --> 03:27:33,080 IMPORTANT DISPARITIES AND THE 4867 03:27:33,080 --> 03:27:37,440 ARTICLE IN THE CORNER WAS 4868 03:27:37,440 --> 03:27:41,120 ACCOMPANIED BY A THOUGHTFUL 4869 03:27:41,120 --> 03:27:43,080 COMMENTARY AND IT'S TIME TO MOVE 4870 03:27:43,080 --> 03:27:45,480 BEYOND THE MEDIAN. 4871 03:27:45,480 --> 03:27:49,480 THEREFORE THE ADDM NETWORK 4872 03:27:49,480 --> 03:27:52,520 FOCUSES ON EARLY IDENTIFICATION 4873 03:27:52,520 --> 03:27:54,520 IN A SEPARATE REPORT FEATURING 4874 03:27:54,520 --> 03:27:57,440 CHILDREN UNDER 4 YEARS AND THESE 4875 03:27:57,440 --> 03:27:58,520 ARE FINDING. 4876 03:27:58,520 --> 03:28:01,960 THIS IS A BAR CHART OF 4877 03:28:01,960 --> 03:28:03,120 PREVALENCE OF CHILDREN UNDER 4 4878 03:28:03,120 --> 03:28:08,240 AND ANALOGOUS FOR THE 8-YEAR-OLD 4879 03:28:08,240 --> 03:28:13,600 CHILDREN OF 10 OF THE 11 SITES 4880 03:28:13,600 --> 03:28:14,760 IT WAS LOWER THAN AMONG 4881 03:28:14,760 --> 03:28:16,120 8-YEAR-OLDS AND CALIFORNIA WAS 4882 03:28:16,120 --> 03:28:18,360 THE EXCEPTION WHERE PREVALENCE 4883 03:28:18,360 --> 03:28:22,200 IS HIGHER AMONG 4-YEAR OLDS. 4884 03:28:22,200 --> 03:28:24,120 THIS FIGURE TAKES THE BARS FROM 4885 03:28:24,120 --> 03:28:26,120 THE PREVIOUS CHART AND THOSE ARE 4886 03:28:26,120 --> 03:28:30,560 NOW GRAY AND ON TOP OF THEM IN 4887 03:28:30,560 --> 03:28:34,520 ORANGE IS THE CHILDREN THAT WERE 4888 03:28:34,520 --> 03:28:37,360 ONLY SUSPECTED BUT NOT YET 4889 03:28:37,360 --> 03:28:39,280 IDENTIFIED AS HAVING AUTISM. 4890 03:28:39,280 --> 03:28:43,600 THERE'S SOME SITE TO SITE 4891 03:28:43,600 --> 03:28:44,840 VARIABILITY SMALL COMPARED TO 4892 03:28:44,840 --> 03:28:46,520 THE CHILDREN ARE IDENTIFIED WITH 4893 03:28:46,520 --> 03:28:49,520 AUTISM AND WHILE IN THE DATA ON 4894 03:28:49,520 --> 03:28:51,640 8-YEAR-OLDS WE SEE MANY AREN'T 4895 03:28:51,640 --> 03:28:53,720 FIRST IDENTIFIED UNTIL AGE 5 OR 4896 03:28:53,720 --> 03:28:54,120 LATER. 4897 03:28:54,120 --> 03:28:58,520 IT WAS SURPRISING TO SOME THE 4898 03:28:58,520 --> 03:28:59,200 SUSPECTED CHILDREN DID 4899 03:28:59,200 --> 03:29:01,560 RELATIVELY LITTLE TO MAKE UP THE 4900 03:29:01,560 --> 03:29:02,720 GAP BETWEEN THE 4 AND 8-YEAR-OLD 4901 03:29:02,720 --> 03:29:09,800 PREVALENCE. 4902 03:29:09,800 --> 03:29:10,760 THIS SHOWS AUTISM PREVALENCE 4903 03:29:10,760 --> 03:29:13,920 AMONG THE 4-YEAR-OLDS AND A 4904 03:29:13,920 --> 03:29:16,920 DIFFERENT PATTERN THAN AMONG THE 4905 03:29:16,920 --> 03:29:17,320 8-YEAR-OLD CHILDREN. 4906 03:29:17,320 --> 03:29:20,200 WHITE CHILDREN HAVE THE LOWEST 4907 03:29:20,200 --> 03:29:21,120 AUTISM PREVALENCE COMPARES TO 4908 03:29:21,120 --> 03:29:23,320 THE OTHER GROUP AND THE FINDING 4909 03:29:23,320 --> 03:29:24,920 FOR HIGHER PREVALENCE AMONG 4910 03:29:24,920 --> 03:29:26,880 HISPANIC CHILDREN ISN'T ONLY DUE 4911 03:29:26,880 --> 03:29:29,400 TO CALIFORNIA, IT WAS OBSERVED 4912 03:29:29,400 --> 03:29:30,280 AT FIVE SITES. 4913 03:29:30,280 --> 03:29:32,280 SO IT WILL BE INTERESTING TO SEE 4914 03:29:32,280 --> 03:29:34,560 IF THESE PATTERNS IF THIS IS 4915 03:29:34,560 --> 03:29:35,640 LIKE WHAT WE'LL SEE IN THE 4916 03:29:35,640 --> 03:29:37,520 FUTURE AMONG 8-YEAR-OLDS OR IF 4917 03:29:37,520 --> 03:29:43,440 THIS REFLECTS DIFFERENT FACTORS 4918 03:29:43,440 --> 03:29:44,880 ASSOCIATED WITH AUTISM 4919 03:29:44,880 --> 03:29:47,080 IDENTIFIED AT YOUNG AGES. 4920 03:29:47,080 --> 03:29:49,800 HERE, IS OUR CUMULATIVE 4921 03:29:49,800 --> 03:29:50,680 INCIDENTS FIGURE SHOWING A 4922 03:29:50,680 --> 03:29:53,920 HIGHER CUMULATIVE INCIDENT OF 4923 03:29:53,920 --> 03:29:55,480 AUTISM IDENTIFIED BY 48 MONTHS 4924 03:29:55,480 --> 03:29:58,040 AMONG CHILDREN BORN IN 2014. 4925 03:29:58,040 --> 03:30:00,440 SO THEY WERE FOUR IN 2018 4926 03:30:00,440 --> 03:30:02,000 COMPARED TO THE 8-YEAR-OLD 4927 03:30:02,000 --> 03:30:04,440 CHILDREN WHO WERE BORN IN 2010. 4928 03:30:04,440 --> 03:30:07,680 SO THROUGH AGE 4, THE YOUNGER 4929 03:30:07,680 --> 03:30:09,280 COHORT IN ORANGE IS OUT PACING 4930 03:30:09,280 --> 03:30:32,200 THE OLDER COHORT IN BLUE. 4931 03:30:32,200 --> 03:30:33,560 AND MOST SHOW EARLIER 4932 03:30:33,560 --> 03:30:34,840 IDENTIFICATION AMONG 4-YEAR-OLDS 4933 03:30:34,840 --> 03:30:37,200 BUT IT WILL BE INTERESTING TO 4934 03:30:37,200 --> 03:30:37,960 SEE IF THE TRENDS CONTINUE INTO 4935 03:30:37,960 --> 03:30:41,440 THE FUTURE. 4936 03:30:41,440 --> 03:30:44,120 I WANTED TO MENTION A FEW OTHER 4937 03:30:44,120 --> 03:30:46,560 THINGS THE ADDM NETWORK IS 4938 03:30:46,560 --> 03:30:50,520 WORKING ON THIS YEAR. 4939 03:30:50,520 --> 03:30:52,600 FOR THE FIRST TIME THE ADDM 4940 03:30:52,600 --> 03:30:55,680 NETWORK CONDUCTED A FOLLOW-UP 4941 03:30:55,680 --> 03:30:56,760 WITH CHILDREN 16 AND TRANSITIONS 4942 03:30:56,760 --> 03:31:00,600 TO ADULTHOOD AND THERE'S A PAPER 4943 03:31:00,600 --> 03:31:01,240 ESTIMATING HOW MANY CHILDREN 4944 03:31:01,240 --> 03:31:04,080 MIGHT MEET THE DESCRIPTION OF 4945 03:31:04,080 --> 03:31:06,600 PROFOUND AUTISM AND THE GOAL IS 4946 03:31:06,600 --> 03:31:09,840 TO CONTRIBUTE POPULATION DATA TO 4947 03:31:09,840 --> 03:31:10,640 THESE CONVERSATIONS AND TO 4948 03:31:10,640 --> 03:31:12,280 BETTER UNDERSTAND WHO THE TERM 4949 03:31:12,280 --> 03:31:14,400 MIGHT APPLY TO AND MAYBE THE 4950 03:31:14,400 --> 03:31:19,400 DATA CAN BE USED TO INFORM HOW 4951 03:31:19,400 --> 03:31:20,680 IT WOULD BE USEFUL. 4952 03:31:20,680 --> 03:31:23,640 THERE'S A PILOT STUDY SOME SITES 4953 03:31:23,640 --> 03:31:26,320 ARE DOING USING DATA LINKAGES 4954 03:31:26,320 --> 03:31:27,080 FOR EFFICIENT STATEWIDE 4955 03:31:27,080 --> 03:31:32,120 PREVALENCE ESTIMATE. 4956 03:31:32,120 --> 03:31:34,600 IT'S NOT TO REPLACE TO EXPLORE 4957 03:31:34,600 --> 03:31:37,520 WAYS TO SUFFICIENTLY GENERATE 4958 03:31:37,520 --> 03:31:38,640 DATA FOR COMMUNITIES WHO HAVE 4959 03:31:38,640 --> 03:31:46,320 NEVER HAD LOCAL DATA AND THE 4960 03:31:46,320 --> 03:31:54,640 ADDM NETWORK SHOULD BE WELL 4961 03:31:54,640 --> 03:31:58,560 SITUATED IN EVALUATING OR 4962 03:31:58,560 --> 03:32:00,200 SERVING CHILDREN THROUGH 2020. 4963 03:32:00,200 --> 03:32:02,320 THIS IS REFERENCE TO THE FOUR 4964 03:32:02,320 --> 03:32:02,920 ARTICLES IN THE SLIDES. 4965 03:32:02,920 --> 03:32:05,240 THERE'S ALSO RESOURCES IN 4966 03:32:05,240 --> 03:32:08,040 ADDITION TO THE SCIENTIFIC 4967 03:32:08,040 --> 03:32:08,320 REPORTS. 4968 03:32:08,320 --> 03:32:10,360 THERE'S A NICELY DESIGNED 4969 03:32:10,360 --> 03:32:14,960 COMMUNITY REPORT THAT SUMMARIZES 4970 03:32:14,960 --> 03:32:17,000 FINDINGS AND IT'S AVAILABLE IN 4971 03:32:17,000 --> 03:32:18,560 SPANISH ON THE WEB. 4972 03:32:18,560 --> 03:32:20,680 THERE'S A SLIDE DECK WITH THE 4973 03:32:20,680 --> 03:32:22,800 LATEST ADDM FINDINGS INCLUDE THE 4974 03:32:22,800 --> 03:32:26,320 SLIDES I USED IN THIS 4975 03:32:26,320 --> 03:32:27,640 PRESENTATION DIVISION HERE AND 4976 03:32:27,640 --> 03:32:34,600 ALSO CREATES EASY READ SUMMARIES 4977 03:32:34,600 --> 03:32:39,920 FOR THE AND WE MAINTAIN AN 4978 03:32:39,920 --> 03:32:41,520 ACTIVE DATA SHOWING ADDM AND 4979 03:32:41,520 --> 03:32:44,920 AUTISM DATA FROM THREE OTHER 4980 03:32:44,920 --> 03:32:48,720 STATE-BASED DATA SOURCES TO LOOK 4981 03:32:48,720 --> 03:32:50,000 UP WHAT'S AVAILABLE FOR WHENEVER 4982 03:32:50,000 --> 03:32:51,000 STATE YOU'RE IN. 4983 03:32:51,000 --> 03:32:56,960 WE HOPE YOU FIND THESE HELPFUL. 4984 03:32:56,960 --> 03:32:58,720 I'D LIKE TO ACKNOWLEDGE AN 4985 03:32:58,720 --> 03:33:01,520 AMAZING GROUP OF SCIENTISTS AND 4986 03:33:01,520 --> 03:33:03,800 PUBLIC HEALTH PROFESSIONALS THAT 4987 03:33:03,800 --> 03:33:06,640 MAKE THIS WORK SUCCESSFUL. 4988 03:33:06,640 --> 03:33:09,880 IT'S A LOT OF WORK AND HARD WORK 4989 03:33:09,880 --> 03:33:11,600 ESPECIALLY WITH THE CHALLENGES 4990 03:33:11,600 --> 03:33:13,320 OF THE PAST COUPLE YEARS AND A 4991 03:33:13,320 --> 03:33:15,600 PRIVILEGE TO HAVE SUCH 4992 03:33:15,600 --> 03:33:17,320 PASSIONATE AND BRILLIANT 4993 03:33:17,320 --> 03:33:17,600 COLLEAGUES. 4994 03:33:17,600 --> 03:33:18,400 THANK YOU FOR YOUR ATTENTION AND 4995 03:33:18,400 --> 03:33:20,920 I'M HAPPY TO RESPOND TO 4996 03:33:20,920 --> 03:33:22,880 QUESTIONS OR COMMENTS IF THERE'S 4997 03:33:22,880 --> 03:33:31,920 TIME. 4998 03:33:31,920 --> 03:33:34,600 >> THANK YOU VERY MUCH. 4999 03:33:34,600 --> 03:33:37,240 DR. MAENNER. 5000 03:33:37,240 --> 03:33:38,240 DID I GET THE PRONUNCIATION 5001 03:33:38,240 --> 03:33:38,680 CORRECT? 5002 03:33:38,680 --> 03:33:39,080 >> YOU DID. 5003 03:33:39,080 --> 03:33:42,520 >> WE HAVE A NUMBER OF 5004 03:33:42,520 --> 03:33:44,200 QUESTIONS. 5005 03:33:44,200 --> 03:33:46,320 STARTING WITH DR. JOE PIVEN. 5006 03:33:46,320 --> 03:33:54,000 PLEASE. 5007 03:33:54,000 --> 03:33:56,480 >> THANK YOU FOR A REALLY CLEAR 5008 03:33:56,480 --> 03:33:58,760 PRESENTATION AND THOUGHT I'D 5009 03:33:58,760 --> 03:33:59,960 TAKE THIS OPPORTUNITY TO ASK A 5010 03:33:59,960 --> 03:34:00,680 QUESTION. 5011 03:34:00,680 --> 03:34:03,520 NOT MEANT AS A CRITICISM. 5012 03:34:03,520 --> 03:34:05,800 THERE'S ALWAYS POTENTIAL FOR 5013 03:34:05,800 --> 03:34:07,640 CONFOUNDERS AND BIASES, BUT CAN 5014 03:34:07,640 --> 03:34:09,680 YOU SPEAK TO THE ISSUE OF 5015 03:34:09,680 --> 03:34:11,960 ASCERTAINMENT BIAS WHEN YOU 5016 03:34:11,960 --> 03:34:15,080 ASCERTAIN THE SAMPLES THROUGH 5017 03:34:15,080 --> 03:34:16,040 THE SCHOOL SYSTEM. 5018 03:34:16,040 --> 03:34:18,560 THERE'S LOTS OF WAYS TO DO THESE 5019 03:34:18,560 --> 03:34:21,160 STUDIES AND IN THE OLD DAYS I'M 5020 03:34:21,160 --> 03:34:22,720 HOLD ENOUGH TO REMEMBER 5021 03:34:22,720 --> 03:34:26,640 PSYCHIATRIC DISORDER THE ECA 5022 03:34:26,640 --> 03:34:29,680 STUDIES WHERE ASCERTAINMENT AT 5023 03:34:29,680 --> 03:34:31,440 SOME SITES WAS DOOR TO DOOR. 5024 03:34:31,440 --> 03:34:33,520 AS A CHILD PSYCHOLOGIST I KNOW 5025 03:34:33,520 --> 03:34:38,080 THE PRESSURES WE HAVE TO MAKE A 5026 03:34:38,080 --> 03:34:41,960 DIAGNOSIS OF AUTISM TO GET 5027 03:34:41,960 --> 03:34:43,840 SERVICES FOR KIDS AND ALSO IT 5028 03:34:43,840 --> 03:34:47,120 WAS -- I THINK IT'S NOTABLE THE 5029 03:34:47,120 --> 03:34:49,760 VARIATION OF PREVALENCE RATES IN 5030 03:34:49,760 --> 03:34:52,320 CALIFORNIA TO MINNESOTA TO 5031 03:34:52,320 --> 03:34:53,920 MARYLAND AND I JUST WANTED YOU 5032 03:34:53,920 --> 03:35:00,440 TO SPEAK TO THE ISSUE OF HOW 5033 03:35:00,440 --> 03:35:02,360 THAT ASKER STAINMENT SCHEME MAY 5034 03:35:02,360 --> 03:35:03,960 BE AFFECTING THE NUMBERS. 5035 03:35:03,960 --> 03:35:10,560 >> IT'S A BIG ISSUE TO CONSIDER 5036 03:35:10,560 --> 03:35:14,640 AND REALLY SHOULD BE A CORE PART 5037 03:35:14,640 --> 03:35:16,040 OF THE INTERPRETATION OF ANY OF 5038 03:35:16,040 --> 03:35:16,480 THESE. 5039 03:35:16,480 --> 03:35:22,520 IN TERMS OF YOUR QUESTION ABOUT 5040 03:35:22,520 --> 03:35:26,320 IDENTIFYING TARGET POPULATION 5041 03:35:26,320 --> 03:35:28,280 FOR THE PUBLIC HEALTH 5042 03:35:28,280 --> 03:35:29,400 SURVEILLANCE SYSTEM AND EVERY 5043 03:35:29,400 --> 03:35:31,120 CHILD THAT IS IN AN AREA SO IT'S 5044 03:35:31,120 --> 03:35:36,440 NOT JUST CHILDREN BEING SERVED 5045 03:35:36,440 --> 03:35:38,680 IN SCHOOL OR PARTICIPATING IN A 5046 03:35:38,680 --> 03:35:39,400 SERVICE SYSTEM WHICH IS CONSIDER 5047 03:35:39,400 --> 03:35:42,680 IT'S CRITICAL TO LINK MULTIPLE 5048 03:35:42,680 --> 03:35:46,840 SOURCES MEDICAL AND EDUCATIONAL 5049 03:35:46,840 --> 03:35:47,880 PROFESSIONALS WITH SERVICE 5050 03:35:47,880 --> 03:35:52,480 PROVIDERS TO TRY TO COVER THE 5051 03:35:52,480 --> 03:35:53,120 POPULATION AS BEST AS POSSIBLE 5052 03:35:53,120 --> 03:35:56,040 AND THE ABILITY TO DO THAT I 5053 03:35:56,040 --> 03:36:01,280 THINK AT THE SITES IS CONTINUING 5054 03:36:01,280 --> 03:36:11,120 TO IMPROVE. 5055 03:36:11,120 --> 03:36:12,680 BEHIND THE SCENES WE'VE HELPED 5056 03:36:12,680 --> 03:36:18,240 DRAFT A TEMPLATE TO BETTER 5057 03:36:18,240 --> 03:36:20,480 UTILIZE EDUCATION DATA FOR 5058 03:36:20,480 --> 03:36:21,160 PUBLIC HEALTH SURVEILLANCE TO 5059 03:36:21,160 --> 03:36:26,520 MEET PRIVACY REQUIREMENTS ON THE 5060 03:36:26,520 --> 03:36:29,680 HEALTH AND EDUCATION SIDE. 5061 03:36:29,680 --> 03:36:30,640 THERE'S DIFFERENTIAL ACCESS THE 5062 03:36:30,640 --> 03:36:31,560 SURVEILLANCE SYSTEMS HAVE AND 5063 03:36:31,560 --> 03:36:33,000 THE BIG THING IS WHAT SERVICES 5064 03:36:33,000 --> 03:36:36,520 ARE IN THE COMMUNITIES. 5065 03:36:36,520 --> 03:36:38,640 THERE HAS ALWAYS BEEN VARIOUS 5066 03:36:38,640 --> 03:36:40,520 FROM SITE TO SITE AND VARIATION 5067 03:36:40,520 --> 03:36:46,440 FROM WEALTHY AND POORER 5068 03:36:46,440 --> 03:36:53,200 NEIGHBORHOODS AND IT'S 5069 03:36:53,200 --> 03:36:54,560 REFLECTIVE OF THOSE BEING 5070 03:36:54,560 --> 03:36:56,320 IDENTIFIED AND WHAT THE 5071 03:36:56,320 --> 03:36:57,840 PRACTICES ARE AND WHAT CHILDREN 5072 03:36:57,840 --> 03:36:58,360 MAY OR MAY NOT BE GETTING 5073 03:36:58,360 --> 03:37:03,920 SERVED. 5074 03:37:03,920 --> 03:37:06,600 I WOULD TAKE THAT AS THE PRIMARY 5075 03:37:06,600 --> 03:37:07,760 INTERPRETATION OF WHAT WE'RE 5076 03:37:07,760 --> 03:37:08,000 SEEING. 5077 03:37:08,000 --> 03:37:09,640 >> DO YOU THINK THERE'S A NEED 5078 03:37:09,640 --> 03:37:11,920 FOR AN ALL-TIME DOOR TO DOOR 5079 03:37:11,920 --> 03:37:13,360 STUDY TO VALIDATE THESE RATES 5080 03:37:13,360 --> 03:37:16,320 AND TAKE OUT THE ISSUE OF 5081 03:37:16,320 --> 03:37:16,880 SERVICES AS THE CONFOUNDING 5082 03:37:16,880 --> 03:37:23,560 FACTOR? 5083 03:37:23,560 --> 03:37:25,480 >> THAT WOULD BE AN INTERESTING 5084 03:37:25,480 --> 03:37:26,680 STUDY TO DO, CERTAINLY. 5085 03:37:26,680 --> 03:37:29,400 I WOULD PROBABLY BE 5086 03:37:29,400 --> 03:37:31,240 EXTRAORDINARILY EXPENSIVE. 5087 03:37:31,240 --> 03:37:37,280 IT WOULD NOT FIT THE RUBRIC OF 5088 03:37:37,280 --> 03:37:39,000 WHAT PUBLIC HEALTH SURVEILLANCE 5089 03:37:39,000 --> 03:37:42,640 THOUGH AND THE MOST USEFUL THING 5090 03:37:42,640 --> 03:37:47,520 WOULDN'T BE TO SAY LIKE IS ADDM 5091 03:37:47,520 --> 03:37:50,600 GETTING THE RIGHT NUMBERS BUT 5092 03:37:50,600 --> 03:37:57,360 COMMUNITY PROVIDERS EFFECTIVELY 5093 03:37:57,360 --> 03:37:59,320 IDENTIFYING INDIVIDUALS AND 5094 03:37:59,320 --> 03:38:02,280 USING THE DATA TO EXAMINE ISSUES 5095 03:38:02,280 --> 03:38:03,000 RELATED TO PRACTICE OR WAYS 5096 03:38:03,000 --> 03:38:06,120 THINGS COULD BE IMPROVED. 5097 03:38:06,120 --> 03:38:11,800 THAT KIND OF DOOR TO DOOR STUDY 5098 03:38:11,800 --> 03:38:12,960 I THINK AS AN ADDITIONAL THING 5099 03:38:12,960 --> 03:38:15,320 IF PEOPLE ARE ABLE TO DO THAT, 5100 03:38:15,320 --> 03:38:16,520 I'M SURE PEOPLE WOULD FIND IT 5101 03:38:16,520 --> 03:38:18,600 INTERESTING BUT AS YOU KNOW, AS 5102 03:38:18,600 --> 03:38:20,160 YOU CERTAINLY KNOW THE QUESTIONS 5103 03:38:20,160 --> 03:38:26,120 OF WHAT'S THE GOLD STANDARD 5104 03:38:26,120 --> 03:38:30,560 WOULD BE TOUGH AS WOULD 5105 03:38:30,560 --> 03:38:34,440 DIFFERENTIAL PARTICIPATION. 5106 03:38:34,440 --> 03:38:35,840 IT'S A HARD QUESTION. 5107 03:38:35,840 --> 03:38:36,320 >> THANKS. 5108 03:38:36,320 --> 03:38:48,520 IT WAS MEANT TO BE. 5109 03:38:48,520 --> 03:38:50,320 >> GO AHEAD, YETTA. 5110 03:38:50,320 --> 03:38:53,840 >> THANKS FOR PRESENTING. 5111 03:38:53,840 --> 03:38:58,360 QUICK QUESTION, HOW ARE THE ADDM 5112 03:38:58,360 --> 03:38:58,880 NETWO 5113 03:38:58,880 --> 03:39:01,320 NETWORK SITES ELECTED BECAUSE I 5114 03:39:01,320 --> 03:39:05,480 HAVEN'T SEEN THEM ANYWHERE AND 5115 03:39:05,480 --> 03:39:07,680 ARE THERE PLANS TO EXPAND THE 5116 03:39:07,680 --> 03:39:08,240 NETWORK. 5117 03:39:08,240 --> 03:39:10,360 I KNOW YOU HAVE A LOT OF ON YOUR 5118 03:39:10,360 --> 03:39:11,680 PLATE BUT JUST THOUGHT I'D ASK. 5119 03:39:11,680 --> 03:39:14,600 >> IT'S A COMPETITIVE PROCESS. 5120 03:39:14,600 --> 03:39:22,520 THE ADDM SITES THE LAST CYCLES 5121 03:39:22,520 --> 03:39:24,640 ARE FUNDED IN FOUR-YEAR 5122 03:39:24,640 --> 03:39:27,440 COOPERATIVE AGREEMENTS. 5123 03:39:27,440 --> 03:39:30,840 IT'S AN OPEN COMPETITION. 5124 03:39:30,840 --> 03:39:36,320 WE FUND AS MANY SITES AS WE HAVE 5125 03:39:36,320 --> 03:39:36,760 RESOURCES TO SUPPORT. 5126 03:39:36,760 --> 03:39:38,320 WE'RE ABLE TO DO MORE THAN WE 5127 03:39:38,320 --> 03:39:39,640 WOULD HAVE IN THE PAST BASED ON 5128 03:39:39,640 --> 03:39:42,680 THE EFFICIENCIES WE'VE BEEN ABLE 5129 03:39:42,680 --> 03:39:44,680 TO IMPLEMENT. 5130 03:39:44,680 --> 03:39:46,520 WOULD WE EXPAND, YEAH. 5131 03:39:46,520 --> 03:39:48,680 WE WOULD LOVE TO BE IN EVERY 5132 03:39:48,680 --> 03:39:49,520 STATE. 5133 03:39:49,520 --> 03:39:50,280 IT'S JUST THAT THE OPPORTUNITY 5134 03:39:50,280 --> 03:39:52,840 AND RESOURCES TO DO THAT BUT WE 5135 03:39:52,840 --> 03:40:01,280 WOULD DEFINITELY WANT TO, OF 5136 03:40:01,280 --> 03:40:01,520 COURSE. 5137 03:40:01,520 --> 03:40:08,560 IT'S MORE ABOUT HOW DO WE 5138 03:40:08,560 --> 03:40:08,880 SUPPORT IT. 5139 03:40:08,880 --> 03:40:11,960 >> THANK YOU FOR THAT. 5140 03:40:11,960 --> 03:40:12,600 >> DINA. 5141 03:40:12,600 --> 03:40:13,680 >> THANK YOU FOR YOUR 5142 03:40:13,680 --> 03:40:15,240 PRESENTATION, I APPRECIATE IT. 5143 03:40:15,240 --> 03:40:17,360 I JUST WANTED TO ASK TWO 5144 03:40:17,360 --> 03:40:17,800 QUESTIONS. 5145 03:40:17,800 --> 03:40:19,200 THE FIRST ONE IS -- AND I'LL BE 5146 03:40:19,200 --> 03:40:19,400 BRIEF. 5147 03:40:19,400 --> 03:40:22,040 THE FIRST IS WHEN YOU LOOK AT 5148 03:40:22,040 --> 03:40:25,480 THE 16-YEAR-OLDS, IS IT THE SAME 5149 03:40:25,480 --> 03:40:26,880 PEOPLE YOU IDENTIFIED PREVIOUSLY 5150 03:40:26,880 --> 03:40:32,520 OR A NEW RANDOM SAMPLE? 5151 03:40:32,520 --> 03:40:35,760 >> IT'S GOING TO BE CHILDREN 5152 03:40:35,760 --> 03:40:38,920 THAT WERE IDENTIFIED PREVIOUSLY 5153 03:40:38,920 --> 03:40:41,440 THAT HAD SOME INDICATION THEY 5154 03:40:41,440 --> 03:40:42,320 MAY HAVE AUTISM. 5155 03:40:42,320 --> 03:40:43,320 COULD BE CHILDREN NEVER 5156 03:40:43,320 --> 03:40:45,240 DIAGNOSED AND STILL DON'T AND 5157 03:40:45,240 --> 03:40:48,400 MOST THE CHILDREN DID HAVE 5158 03:40:48,400 --> 03:40:50,120 AUTISM AND SO IT'S POSSIBLE TO 5159 03:40:50,120 --> 03:40:52,960 PICK UP SOME CHILDREN FORMALLY 5160 03:40:52,960 --> 03:40:54,120 IDENTIFIED IN THE COMMUNITY 5161 03:40:54,120 --> 03:40:58,080 AFTER AGE 8 OR AS TEENAGERS. 5162 03:40:58,080 --> 03:40:58,840 IT'S SEEING WHAT'S HAPPENED 5163 03:40:58,840 --> 03:41:01,120 SINCE THE GROUP WAS ASCERTAINED 5164 03:41:01,120 --> 03:41:02,320 AT AGE 8. 5165 03:41:02,320 --> 03:41:04,480 >> AND I'D LOVE TO YOU RESPOND 5166 03:41:04,480 --> 03:41:06,440 TO A QUESTION ABOUT SELECTION 5167 03:41:06,440 --> 03:41:08,320 BIAS. 5168 03:41:08,320 --> 03:41:09,520 GIVEN MANY CHILDREN WHO HAVE 5169 03:41:09,520 --> 03:41:11,760 INTELLECTUAL DISABILITIES OR MAY 5170 03:41:11,760 --> 03:41:14,320 HAVE CO-OCCURRING DOWN SYNDROME 5171 03:41:14,320 --> 03:41:16,120 MAY HAVE BEEN PREVIOUSLY UNDER 5172 03:41:16,120 --> 03:41:21,280 DIAGNOSED AND NOT ASSIGNED AN 5173 03:41:21,280 --> 03:41:22,240 AUTISM DIAGNOSIS. 5174 03:41:22,240 --> 03:41:25,760 MANY AUTISTIC INDIVIDUALS ARE IN 5175 03:41:25,760 --> 03:41:27,920 SCHOOLS UNDER 504 PLANS WHERE 5176 03:41:27,920 --> 03:41:32,720 THEY DON'T CATEGORIZE THE NATURE 5177 03:41:32,720 --> 03:41:35,640 OF THE DISABILITY. 5178 03:41:35,640 --> 03:41:38,200 WHAT HAVE YOU DONE TO TRY TO BE 5179 03:41:38,200 --> 03:41:40,200 PREVENTIVE ABOUT THOSE ASPECTS 5180 03:41:40,200 --> 03:41:45,880 WITH THE BIAS AND WHAT ARE WE 5181 03:41:45,880 --> 03:41:47,160 DOING TO IDENTIFY THIS IN 5182 03:41:47,160 --> 03:41:47,880 ADULTHOOD BECAUSE MANY DIDN'T 5183 03:41:47,880 --> 03:41:50,280 GET IDENTIFIED IN EARLY 5184 03:41:50,280 --> 03:41:50,520 CHILDHOOD. 5185 03:41:50,520 --> 03:41:51,240 >> THANK YOU. 5186 03:41:51,240 --> 03:41:53,280 THOSE ARE GOOD QUESTIONS AND 5187 03:41:53,280 --> 03:41:55,200 THINGS WE SPEND EIGHT OF TIME 5188 03:41:55,200 --> 03:42:00,160 THINKING ABOUT AND IT'S HARD 5189 03:42:00,160 --> 03:42:04,520 BECAUSE WE ARE BASING OUR WORK 5190 03:42:04,520 --> 03:42:06,800 USING THE EXISTING SERVICE AND 5191 03:42:06,800 --> 03:42:08,320 EDUCATION INFRASTRUCTURE AND IT 5192 03:42:08,320 --> 03:42:09,880 VARIES FROM PLACE TO PLACE. 5193 03:42:09,880 --> 03:42:11,640 IF CHILDREN MAY NOT BE 5194 03:42:11,640 --> 03:42:14,000 IDENTIFIED AS HAVING AUTISM 5195 03:42:14,000 --> 03:42:15,120 BECAUSE THEY HAVE 504 PLANS WE 5196 03:42:15,120 --> 03:42:20,680 ARE TRYING TO FIND THEM IN OTHER 5197 03:42:20,680 --> 03:42:21,000 SYSTEMS. 5198 03:42:21,000 --> 03:42:24,120 MAYBE THEY ARE RECEIVING AUTISM 5199 03:42:24,120 --> 03:42:26,520 SERVICES THROUGH STATE FUNDED 5200 03:42:26,520 --> 03:42:28,200 MEDICAID PROGRAMS. 5201 03:42:28,200 --> 03:42:30,800 MAYBE THEY'RE DIAGNOSED AT WITH 5202 03:42:30,800 --> 03:42:33,200 AUTISM AT THE DOCTOR'S OFFICE. 5203 03:42:33,200 --> 03:42:35,680 WE TRY TO LINK THE SOURCES WE 5204 03:42:35,680 --> 03:42:36,840 HAVE AVAILABLE AND SAY WHAT WE 5205 03:42:36,840 --> 03:42:38,200 CAN FIND. 5206 03:42:38,200 --> 03:42:39,640 IN MATERIALS OF CO-OCCURRING 5207 03:42:39,640 --> 03:42:41,760 CONDITIONS, WE DO TRACK WHEN 5208 03:42:41,760 --> 03:42:47,960 THOSE ARE DOCUMENTED FOR SELECT 5209 03:42:47,960 --> 03:42:49,000 THINGS. 5210 03:42:49,000 --> 03:42:49,920 IT'S AN INTERESTING IDEA FOR 5211 03:42:49,920 --> 03:42:52,400 ANALYSIS TO LOOK AT WHETHER THE 5212 03:42:52,400 --> 03:42:55,280 PROPORTION OF CHILDREN WITH 5213 03:42:55,280 --> 03:42:57,000 CERTAIN CONDITIONS LIKE DOWNS 5214 03:42:57,000 --> 03:42:58,920 SYNDROME OR OTHER CONDITIONS 5215 03:42:58,920 --> 03:43:04,200 THAT WOULD HAVE BEEN ASKCERTAINED 5216 03:43:04,200 --> 03:43:05,360 OVER TIME WHETHER THE 5217 03:43:05,360 --> 03:43:06,640 REPRESENTATION IS CHANGING AMONG 5218 03:43:06,640 --> 03:43:07,760 CHILDREN WITH AUTISM. 5219 03:43:07,760 --> 03:43:14,560 AND FOR ADULTS, YEAH, IT'S 5220 03:43:14,560 --> 03:43:15,920 ANOTHER REALLY IMPORTANT -- IN 5221 03:43:15,920 --> 03:43:21,000 MY MANY YEARS AGO IN WHEN I CAME 5222 03:43:21,000 --> 03:43:22,840 TO THE FELLOWSHIP PROGRAM AT CDC 5223 03:43:22,840 --> 03:43:24,680 I SAID I WANTED TO LEAD THE 5224 03:43:24,680 --> 03:43:26,120 AGENCY IN DOING SOMETHING WITH 5225 03:43:26,120 --> 03:43:28,120 ADULTS AND IT'S HARD TO CHANGE 5226 03:43:28,120 --> 03:43:29,760 THINGS BUT WE ARE TAKING STEPS 5227 03:43:29,760 --> 03:43:32,360 TO START LOOKING AT ADOLESCENTS 5228 03:43:32,360 --> 03:43:34,440 AND WE HAVE SOME GREAT 5229 03:43:34,440 --> 03:43:38,240 SCIENTISTS WITHIN THE NETWORK 5230 03:43:38,240 --> 03:43:39,360 THAT ARE THINKING STRATEGICALLY 5231 03:43:39,360 --> 03:43:41,360 BASED ON CURRENT ACTIVITIES CAN 5232 03:43:41,360 --> 03:43:42,600 WE LINK FORWARD AFTER HIGH 5233 03:43:42,600 --> 03:43:43,440 SCHOOL TO START LOOKING AT 5234 03:43:43,440 --> 03:43:47,640 OUTCOMES. 5235 03:43:47,640 --> 03:43:49,600 WE ARE INTENSELY INTERESTED IN 5236 03:43:49,600 --> 03:43:52,320 DOING MORE WITH THAT BUT AGAIN 5237 03:43:52,320 --> 03:43:55,000 IT COMES DOWN TO RESOURCES AND 5238 03:43:55,000 --> 03:43:55,640 THE OPPORTUNITIES THAT ARE 5239 03:43:55,640 --> 03:44:05,240 AVAILABLE TO US RIGHT NOW. 5240 03:44:05,240 --> 03:44:10,560 >> THANKS, LARRY. 5241 03:44:10,560 --> 03:44:20,880 LARRY? 5242 03:44:20,880 --> 03:44:22,640 >> I'M SORRY. 5243 03:44:22,640 --> 03:44:24,240 IT SAID VIDEO STOPPED BY THE 5244 03:44:24,240 --> 03:44:26,280 HOST. 5245 03:44:26,280 --> 03:44:27,560 MATTHEW, CAN YOU TALK A LITTLE 5246 03:44:27,560 --> 03:44:35,320 BIT ABOUT HOW OR IF YOU USE THE 5247 03:44:35,320 --> 03:44:36,440 DEPARTMENT OF EDUCATION'S DATA? 5248 03:44:36,440 --> 03:44:40,440 >> SO WHEN YOU SAY OSEP DATA, DO 5249 03:44:40,440 --> 03:44:45,680 YOU MEAN DATA OSEP HOLDS OR 5250 03:44:45,680 --> 03:44:48,200 COVERED BY LIKE POLICIES? 5251 03:44:48,200 --> 03:44:50,600 BECAUSE THE WAY THE SURVEILLANCE 5252 03:44:50,600 --> 03:44:52,480 SYSTEM WORKS IS IT'S ALL DATA 5253 03:44:52,480 --> 03:44:53,520 COLLECTION FROM LIKE STATE OR 5254 03:44:53,520 --> 03:45:01,960 LOCAL ENTITIES. 5255 03:45:01,960 --> 03:45:04,400 WE HAD A NICE COLLABORATION WITH 5256 03:45:04,400 --> 03:45:06,560 YOUR PRIVACY OFFICE THAT HELPED 5257 03:45:06,560 --> 03:45:10,920 US OUTLINE A DATA USE AGREEMENT 5258 03:45:10,920 --> 03:45:16,760 BETWEEN LOCAL ENTITIES TO 5259 03:45:16,760 --> 03:45:17,400 INCORPORATE SPECIAL EDUCATION 5260 03:45:17,400 --> 03:45:21,480 DATA TO DO IT IN A MORE FORMAL 5261 03:45:21,480 --> 03:45:24,840 WAY THAT MEETS THE LEGAL 5262 03:45:24,840 --> 03:45:25,560 REQUIREMENTS. 5263 03:45:25,560 --> 03:45:28,160 BUT WE DID NOT GET DATA FROM 5264 03:45:28,160 --> 03:45:29,120 LIKE A FEDERAL SOURCE AT THIS 5265 03:45:29,120 --> 03:45:30,640 POINT. 5266 03:45:30,640 --> 03:45:36,560 >> WELL, OUR DATA ARE PUBLIC. 5267 03:45:36,560 --> 03:45:40,120 SO THERE'S NO ISSUES WITH OUR 5268 03:45:40,120 --> 03:45:40,440 DATA. 5269 03:45:40,440 --> 03:45:42,560 ANY STATE DATA THAT YOU WANT TO 5270 03:45:42,560 --> 03:45:46,600 REFERENCE TO, WE HAVE THOSE. 5271 03:45:46,600 --> 03:45:52,520 IT'S ON OUR WEBSITE. 5272 03:45:52,520 --> 03:45:53,760 I OVERSEE ALL THE DATA. 5273 03:45:53,760 --> 03:45:56,320 IT'S ONE OF MY SIDE JOBS. 5274 03:45:56,320 --> 03:45:57,920 >> LIKE THE CHILD COUNT DATA? 5275 03:45:57,920 --> 03:45:58,320 >> YES. 5276 03:45:58,320 --> 03:46:02,080 >> SO THAT'S A SLIGHTLY 5277 03:46:02,080 --> 03:46:05,280 DIFFERENT THING IN OUR 5278 03:46:05,280 --> 03:46:09,400 SURVEILLANCE WORK WE NEED 5279 03:46:09,400 --> 03:46:10,400 IDENTIFIABLE INFORMATION TO MAKE 5280 03:46:10,400 --> 03:46:13,280 LINKAGES TO KNOW IF A CHILD IN 5281 03:46:13,280 --> 03:46:15,800 SCHOOL IS THE SAME CHILD 5282 03:46:15,800 --> 03:46:17,520 RECEIVING LIKE MEDICAID SERVICES 5283 03:46:17,520 --> 03:46:18,320 FOR AUTISM. 5284 03:46:18,320 --> 03:46:23,120 THEN THAT IDENTIFIABLE 5285 03:46:23,120 --> 03:46:26,320 INFORMATION IS DESTROYED AND AS 5286 03:46:26,320 --> 03:46:29,000 AN ANALYTIC EXTRACT IT'S 5287 03:46:29,000 --> 03:46:30,640 DE-IDENTIFIED AND MESSED UPON 5288 03:46:30,640 --> 03:46:32,680 THE CHILD DATA IS GREAT. 5289 03:46:32,680 --> 03:46:39,960 WE DO USE IT ON THE -- WE HAVE A 5290 03:46:39,960 --> 03:46:41,280 DATA DIGITALIZATION SITE AND 5291 03:46:41,280 --> 03:46:43,520 ONCE A YEAR WE TRY TO PUT THE 5292 03:46:43,520 --> 03:46:46,080 LATEST CHILD COUNT DATA SO 5293 03:46:46,080 --> 03:46:47,520 PEOPLE IN EVERY STATE CAN 5294 03:46:47,520 --> 03:46:49,320 COMPARE WHATEVER STATE THEY'RE 5295 03:46:49,320 --> 03:46:51,600 IN AND THE SPECIAL EDUCATION 5296 03:46:51,600 --> 03:46:52,920 PREVALENCE OF THE AUTISM 5297 03:46:52,920 --> 03:46:55,720 CATEGORY VERSUS MEDICAID OR THE 5298 03:46:55,720 --> 03:46:58,520 SERVICES OR ADDM IF THERE'S 5299 03:46:58,520 --> 03:46:58,720 ADDM. 5300 03:46:58,720 --> 03:47:02,120 >> JUST TWO THINGS VERY QUICKLY. 5301 03:47:02,120 --> 03:47:05,120 ONE, JUST BE AWARE THAT ANY OF 5302 03:47:05,120 --> 03:47:07,960 OUR DATA ABOUT 3 TO 5-YEAR-OLDS 5303 03:47:07,960 --> 03:47:11,680 IS USUALLY ODDLY SKEWED IN THE 5304 03:47:11,680 --> 03:47:16,520 SENSE THAT STATES ARE ALLOWED TO 5305 03:47:16,520 --> 03:47:18,680 REPORT CHILDREN AS 5306 03:47:18,680 --> 03:47:20,560 DEVELOPMENTALLY DELAYED OPPOSED 5307 03:47:20,560 --> 03:47:22,320 TO PUTTING A DISABILITY CATEGORY 5308 03:47:22,320 --> 03:47:23,400 ON THEM. 5309 03:47:23,400 --> 03:47:25,120 SO THERE'S A LARGE GROUP THAT 5310 03:47:25,120 --> 03:47:31,960 ARE IN FACT IN THAT CATEGORY SO 5311 03:47:31,960 --> 03:47:33,720 IT RESULTS IN UNDERSTAND 5312 03:47:33,720 --> 03:47:34,560 COUNTING THE SPECIFIC 5313 03:47:34,560 --> 03:47:34,920 DISABILITIES. 5314 03:47:34,920 --> 03:47:37,320 AND THE OTHER THING IS JUST AN 5315 03:47:37,320 --> 03:47:42,960 OFFER THAT IF YOU WANT TO GET 5316 03:47:42,960 --> 03:47:48,680 TOGETHER WITH OUR DATA TEAM WHO 5317 03:47:48,680 --> 03:47:55,560 ARE PRETTY TERRIFIC, WE'D BE 5318 03:47:55,560 --> 03:47:57,440 HAPPY TO FACILITATE ANYTHING WIN 5319 03:47:57,440 --> 03:48:00,280 YOUR ANALYSES TO EXPLORE YOUR 5320 03:48:00,280 --> 03:48:00,520 DATA. 5321 03:48:00,520 --> 03:48:01,000 IT'S AN OFFER. 5322 03:48:01,000 --> 03:48:02,280 >> THANK YOU VERY MUCH. 5323 03:48:02,280 --> 03:48:04,520 WE HAVE A COUPLE REALLY 5324 03:48:04,520 --> 03:48:05,680 EXCELLENT SCIENTISTS ON STAFF 5325 03:48:05,680 --> 03:48:07,120 THAT I THINK WILL BE EAGER TO 5326 03:48:07,120 --> 03:48:10,520 GET IN TOUCH WITH YOU AND YOUR 5327 03:48:10,520 --> 03:48:10,680 TEAM. 5328 03:48:10,680 --> 03:48:11,040 SO THANK YOU. 5329 03:48:11,040 --> 03:48:11,680 >> YOU'RE WELCOME. 5330 03:48:11,680 --> 03:48:13,200 >> WE'LL TAKE TWO MORE 5331 03:48:13,200 --> 03:48:13,480 QUESTIONS. 5332 03:48:13,480 --> 03:48:22,720 JALEN AND THEN SCOTT. 5333 03:48:22,720 --> 03:48:24,480 >> THANK YOU AND THANK YOU FOR 5334 03:48:24,480 --> 03:48:25,480 THE EXCELLENT PRESENTATION AND 5335 03:48:25,480 --> 03:48:27,560 IT'S NICE TO KNOW WHAT'S COMING 5336 03:48:27,560 --> 03:48:28,680 UP THROUGH THE PIPELINE. 5337 03:48:28,680 --> 03:48:34,080 I STILL HAVE QUESTIONS WITH THE 5338 03:48:34,080 --> 03:48:37,320 CDC AND LOOKING AT ADULT 5339 03:48:37,320 --> 03:48:38,600 STATISTICS AND THERE'S BEEN 5340 03:48:38,600 --> 03:48:41,280 EXTRAPOLATIONS AND THINGS AND I 5341 03:48:41,280 --> 03:48:42,880 WAS EAGER TO FIND YOUR DATA HAD 5342 03:48:42,880 --> 03:48:48,480 BEEN HIDDEN IN THE MINUTE OF THE 5343 03:48:48,480 --> 03:48:51,960 COVID EPIDEMIC BECAUSE YOU 5344 03:48:51,960 --> 03:48:53,080 COULDN'T BRING THINGS FORWARD 5345 03:48:53,080 --> 03:48:54,680 WHEN YOU HAD TO WORK ON COVID 5346 03:48:54,680 --> 03:48:55,680 THINGS SO IT'S HELPFUL 5347 03:48:55,680 --> 03:48:56,720 INFORMATION TO US. 5348 03:48:56,720 --> 03:48:58,760 I DO HAVE A 32-YEAR-OLD SON WHO 5349 03:48:58,760 --> 03:49:02,320 IS KIND OF ON THAT EDGE OF THE 5350 03:49:02,320 --> 03:49:03,880 TSUNAMI WAVE. 5351 03:49:03,880 --> 03:49:07,040 BUT WE ARE SEEING SO MUCH MORE 5352 03:49:07,040 --> 03:49:08,880 WITHIN OUR CIRCLES OF WORKING 5353 03:49:08,880 --> 03:49:12,720 WITH ADULTS WITH AUTISM THAT WE 5354 03:49:12,720 --> 03:49:14,280 DON'T HAVE REALLY ACCURATE DATA 5355 03:49:14,280 --> 03:49:17,000 AND I DON'T KNOW HOW ONE GOES IN 5356 03:49:17,000 --> 03:49:18,320 TO DO THAT TO FIND THINGS 5357 03:49:18,320 --> 03:49:19,920 BECAUSE THERE ISN'T THE SCHOOL. 5358 03:49:19,920 --> 03:49:21,920 THERE'S HIPAA AND ALL SORTS OF 5359 03:49:21,920 --> 03:49:22,160 THINGS. 5360 03:49:22,160 --> 03:49:24,600 SOME PEOPLE HAVE NOT BEEN 5361 03:49:24,600 --> 03:49:26,080 DIAGNOSED BEFORE BUT IT'S HARD 5362 03:49:26,080 --> 03:49:29,320 FOR ADVOCACY TO GO IN AND ASK 5363 03:49:29,320 --> 03:49:32,120 STATES TO HELP PUT THINGS 5364 03:49:32,120 --> 03:49:35,800 TOGETHER FOR ADULTS WITHOUT 5365 03:49:35,800 --> 03:49:38,640 HAVING THAT INFORMATION ABOUT 5366 03:49:38,640 --> 03:49:39,920 HOW MANY ADULTS OR WHAT THE 5367 03:49:39,920 --> 03:49:40,680 PREVALENCE IS. 5368 03:49:40,680 --> 03:49:41,560 I THINK THERE'S A HUGE CHALLENGE 5369 03:49:41,560 --> 03:49:44,400 THERE. 5370 03:49:44,400 --> 03:49:46,760 AND I THINK IT'S VERY MUCH A 5371 03:49:46,760 --> 03:49:48,120 PUBLIC HEALTH CRISIS BECAUSE 5372 03:49:48,120 --> 03:49:53,920 EIGHT OF THE THINGS WE'RE SEEING 5373 03:49:53,920 --> 03:49:56,360 AND A LOT OF THE REPORTS AND 5374 03:49:56,360 --> 03:49:57,080 IT'S INTERESTING WITH SOCIAL 5375 03:49:57,080 --> 03:49:59,040 SECURITY YOU HAVE TO BE 5376 03:49:59,040 --> 03:50:00,640 IDENTIFIED BEFORE 22 BUT THEN 5377 03:50:00,640 --> 03:50:01,200 THERE'S ADULTS. 5378 03:50:01,200 --> 03:50:07,000 IS THERE ANYTHING STANDING IN 5379 03:50:07,000 --> 03:50:08,560 C.D.C.'S WAY TO STEPPING FORWARD 5380 03:50:08,560 --> 03:50:14,560 TO DOING MORE RESEARCH ON 5381 03:50:14,560 --> 03:50:14,800 ADULTS? 5382 03:50:14,800 --> 03:50:22,960 >> I THINK THAT'S AN INTERESTING 5383 03:50:22,960 --> 03:50:25,920 WAY OF FRAMING THAT QUESTION AND 5384 03:50:25,920 --> 03:50:27,360 THERE'S BEEN FOCUS ON CHILDREN 5385 03:50:27,360 --> 03:50:29,480 AND BOTH IN OUR SURVEILLANCE 5386 03:50:29,480 --> 03:50:31,040 WORK AND IN THE RESEARCH PROGRAM 5387 03:50:31,040 --> 03:50:34,120 AT CDC THE STUDIES TO EXPLORE 5388 03:50:34,120 --> 03:50:36,320 EARLY DEVELOPMENT WE'RE MOVING 5389 03:50:36,320 --> 03:50:41,120 UP THE AGE RANGE TO ADOLESCENCE 5390 03:50:41,120 --> 03:50:46,080 AND CERTAINLY FOR THE SEED 5391 03:50:46,080 --> 03:50:50,120 RESEARCH PROJECT I THINK SOME OF 5392 03:50:50,120 --> 03:50:52,920 THE COHORT MAY BE STARTING TO 5393 03:50:52,920 --> 03:50:55,520 REACH ADULTHOOD BUT IT'S TOUGH 5394 03:50:55,520 --> 03:50:56,880 TO WAIT FOR LONGITUDINAL DATA IN 5395 03:50:56,880 --> 03:51:03,320 REAL TIME. 5396 03:51:03,320 --> 03:51:08,400 YOU'RE ACTIVITIES ARE DESCRIBED 5397 03:51:08,400 --> 03:51:09,480 THROUGH A CONGRESSIONAL THERE'S 5398 03:51:09,480 --> 03:51:16,520 LANGUAGE ABOUT WHAT WE WILL DO. 5399 03:51:16,520 --> 03:51:21,320 AND I THINK RESEARCH WOULD TAKE 5400 03:51:21,320 --> 03:51:22,400 OPPORTUNITY TO EXPAND TO ADULTS 5401 03:51:22,400 --> 03:51:24,200 AND HAVE MORE PROGRAMS IN THAT. 5402 03:51:24,200 --> 03:51:25,440 >> THAT'S HELPFUL INFORMATION 5403 03:51:25,440 --> 03:51:26,720 RIGHT THERE. 5404 03:51:26,720 --> 03:51:31,960 THANK YOU VERY MUCH. 5405 03:51:31,960 --> 03:51:32,960 >> SCOTT. 5406 03:51:32,960 --> 03:51:49,720 >> AND WE ARE BEHIND THE CURVE 5407 03:51:49,720 --> 03:52:04,560 IN COMPARISON TO SAY THE U.K. 5408 03:52:04,560 --> 03:52:05,840 AND AUSTRALIA FOCUSSED MORE ON 5409 03:52:05,840 --> 03:52:07,920 THE ADULT, ADOLESCENT FOCUS. 5410 03:52:07,920 --> 03:52:10,880 DO WE HAVE THE POSSIBILITIES AND 5411 03:52:10,880 --> 03:52:13,440 I DON'T KNOW IF IT WILL HELP 5412 03:52:13,440 --> 03:52:15,320 DRIVE THE BALL FORWARD AND 5413 03:52:15,320 --> 03:52:16,560 COLLABORATING MAYBE COULD YOU 5414 03:52:16,560 --> 03:52:19,560 POTENTIALLY BE CONNECTING MORE 5415 03:52:19,560 --> 03:52:21,400 WITH YOUR INTERNATIONAL 5416 03:52:21,400 --> 03:52:23,320 COUNTERPARTS AND KINGDOM IN 5417 03:52:23,320 --> 03:52:28,120 AUSTRALIA TO LEARN WHAT THEY'VE 5418 03:52:28,120 --> 03:52:33,360 BEEN DOING AND MONITORING ADULT 5419 03:52:33,360 --> 03:52:53,000 S AND LOOK AT WHERE THE CURRENT 5420 03:52:53,000 --> 03:52:54,040 STATE AS FAR AS THE LIVED 5421 03:52:54,040 --> 03:52:56,200 EXPERIENCES AND THE CHALLENGES 5422 03:52:56,200 --> 03:52:57,960 FOLKS HAVE AND HAVE MORE 5423 03:52:57,960 --> 03:53:00,520 CONCRETE DATA RATHER THAN 5424 03:53:00,520 --> 03:53:02,920 ESTIMATES FOR AUTISTIC ADULTS 5425 03:53:02,920 --> 03:53:04,120 THOUGH THE ESTIMATES WERE 5426 03:53:04,120 --> 03:53:05,960 HELPFUL AND THE SECOND PART IS 5427 03:53:05,960 --> 03:53:08,520 ARE THERE PROMISING AND BEST 5428 03:53:08,520 --> 03:53:11,320 PRACTICES IN THE ADDM NETWORK 5429 03:53:11,320 --> 03:53:14,680 RIGHT NOW THAT COULD BE HELPFUL 5430 03:53:14,680 --> 03:53:21,040 YOU THINK COULD BE APPLIED FOR 5431 03:53:21,040 --> 03:53:23,560 HAVING NEEDS ASSESSMENTS FOR A 5432 03:53:23,560 --> 03:53:25,120 PLETHORA OF FOCUSES FOR ADULTS 5433 03:53:25,120 --> 03:53:27,960 AND MONITORING AND TRACKING 5434 03:53:27,960 --> 03:53:29,680 WHERE CHALLENGES LIE AND WHAT 5435 03:53:29,680 --> 03:53:31,920 THE CURRENT STATE IN TERMS OF 5436 03:53:31,920 --> 03:53:34,000 THE CONTENTS FOR THE POPULATION 5437 03:53:34,000 --> 03:53:36,840 AS FOLKS AGE INTO AND THROUGH 5438 03:53:36,840 --> 03:53:38,800 ADULT LIFE LOOKS LIKE. 5439 03:53:38,800 --> 03:53:42,120 IF SO CAN YOU SHARE ANY OF THOSE 5440 03:53:42,120 --> 03:53:43,280 SPECIFIC PROMISING BEST 5441 03:53:43,280 --> 03:53:44,640 PRACTICES THAT CAN BE APPLIED TO 5442 03:53:44,640 --> 03:53:46,360 THAT ADULT FOCUS? 5443 03:53:46,360 --> 03:53:48,120 >> THANK YOU FOR YOUR QUESTION 5444 03:53:48,120 --> 03:53:48,640 QUESTIONS AND COMMENTS. 5445 03:53:48,640 --> 03:53:53,520 THE IDEA OF LOOKING AT WHAT 5446 03:53:53,520 --> 03:53:55,760 INTERNATIONAL GROUPS ARE DOING, 5447 03:53:55,760 --> 03:53:56,680 IS EXCELLENT. 5448 03:53:56,680 --> 03:54:01,000 AS YOU WERE SAYING THAT WHAT 5449 03:54:01,000 --> 03:54:10,400 CAME TO MIND IS CEREBRAL PALSY 5450 03:54:10,400 --> 03:54:13,520 SURVEILLANCE AND SCANDINAVIAN 5451 03:54:13,520 --> 03:54:15,640 COUNTRIES AND U.K. AND AUSTRALIA 5452 03:54:15,640 --> 03:54:18,520 ARE LEADERS IN THERE. 5453 03:54:18,520 --> 03:54:20,200 BEING MORE FAMILIAR WITH THE 5454 03:54:20,200 --> 03:54:21,720 POPULATION LEVEL EFFORTS IN 5455 03:54:21,720 --> 03:54:24,280 THOSE COUNTRY AND MAYBE 5456 03:54:24,280 --> 03:54:25,880 CONNECTING WITH THEM COULD BE 5457 03:54:25,880 --> 03:54:27,680 VALUABLE AND INFORMATIVE FOR 5458 03:54:27,680 --> 03:54:29,240 FUTURE WORK. 5459 03:54:29,240 --> 03:54:30,680 IN TERMS OF OUR WORK INFORMING 5460 03:54:30,680 --> 03:54:37,120 NEEDS ASSESSMENTS, I THINK THE 5461 03:54:37,120 --> 03:54:38,160 GOAL OF PUBLIC HEALTH 5462 03:54:38,160 --> 03:54:40,400 SURVEILLANCE IS DONE AT A 5463 03:54:40,400 --> 03:54:42,840 POPULATION LEVEL THOUGH AND IT 5464 03:54:42,840 --> 03:54:45,600 MIGHT SUGGEST CLUES IN 5465 03:54:45,600 --> 03:54:46,680 DISPARITIES OR THINGS THAT SEEM 5466 03:54:46,680 --> 03:54:49,680 TO BE HAPPENING OR AREN'T 5467 03:54:49,680 --> 03:54:51,120 HAPPENING THAT WOULD WARRANT 5468 03:54:51,120 --> 03:54:54,600 FURTHER INVESTIGATION AND 5469 03:54:54,600 --> 03:54:57,480 CONVERSATION AT LEAST. 5470 03:54:57,480 --> 03:54:59,520 BUT SEED I KNOW THEY PIVOTED IN 5471 03:54:59,520 --> 03:55:02,640 THE LAST YEAR AND A HALF OR SO 5472 03:55:02,640 --> 03:55:06,640 TO DO A COVID IMPACT STUDY TO 5473 03:55:06,640 --> 03:55:09,440 LEARN HOW FAMILIES ARE BEING 5474 03:55:09,440 --> 03:55:17,200 AFFECTED BY THE PANDEMIC. 5475 03:55:17,200 --> 03:55:18,640 I AGREE. 5476 03:55:18,640 --> 03:55:23,320 THERE'S MORE WE COULD DO TO 5477 03:55:23,320 --> 03:55:26,640 THINK ABOUT HOW BEST TO SERVE 5478 03:55:26,640 --> 03:55:27,520 PEOPLE AND UNDERSTAND WHAT THEIR 5479 03:55:27,520 --> 03:55:29,280 NEEDS ARE CURRENTLY. 5480 03:55:29,280 --> 03:55:32,280 >> JUST TO CLARIFY, I THINK 5481 03:55:32,280 --> 03:55:33,520 SCOTT WAS REFERRING TO 5482 03:55:33,520 --> 03:55:36,960 INTERNATIONAL STUDIES LOOKING AT 5483 03:55:36,960 --> 03:55:39,160 PREVALENCE IN REGARD TO AUTISTIC 5484 03:55:39,160 --> 03:55:40,640 ADULTS. 5485 03:55:40,640 --> 03:55:42,000 THERE'S RESEARCH ABOUT THAT JUST 5486 03:55:42,000 --> 03:55:42,680 TO CLARIFY. 5487 03:55:42,680 --> 03:55:43,280 THANK YOU. 5488 03:55:43,280 --> 03:55:45,520 >> BRIEFLY, DR. GORDON, I WANTED 5489 03:55:45,520 --> 03:55:52,880 TO CLEAR CLARIFY I WAS 5490 03:55:52,880 --> 03:55:56,760 REFERRING UNITED KINGDOM DID A 5491 03:55:56,760 --> 03:55:57,880 NEEDS ASSESSMENT CROSS TE 5492 03:55:57,880 --> 03:56:00,160 COUNTRY AND EXPANDED ON THAT AND 5493 03:56:00,160 --> 03:56:01,720 ENHANCED THAT AT THE LOCAL LEVEL 5494 03:56:01,720 --> 03:56:04,440 AND UP TO THE NATIONAL LEVEL AND 5495 03:56:04,440 --> 03:56:05,520 THAT'S REALLY DRIVEN A LOT OF 5496 03:56:05,520 --> 03:56:07,160 WHAT THEY'VE BEEN DOING FOR 5497 03:56:07,160 --> 03:56:09,600 THEIR SERVICE SYSTEM TO BETTER 5498 03:56:09,600 --> 03:56:11,480 MEET THE NEEDS OF AUTISTIC 5499 03:56:11,480 --> 03:56:20,640 ADULTS AND THE GAPS WE POINT OUT 5500 03:56:20,640 --> 03:56:21,160 IN THE UNITED STATES FOR 5501 03:56:21,160 --> 03:56:22,680 EMPLOYMENT AND HAVE MORE DATA 5502 03:56:22,680 --> 03:56:23,640 FOR NEEDS ASSESSMENT AND 5503 03:56:23,640 --> 03:56:25,920 MONITORING AND THERE'S 5504 03:56:25,920 --> 03:56:28,720 SIMILARITIES IN THE SYSTEM. 5505 03:56:28,720 --> 03:56:31,160 THAT'S WHY I THINK WOULD BE A 5506 03:56:31,160 --> 03:56:34,480 GREATER BENEFIT THAN CONNECTING 5507 03:56:34,480 --> 03:56:36,240 WITH FOLKS INTERNATIONALLY 5508 03:56:36,240 --> 03:56:38,640 BECAUSE THOSE FOLKS HAVE 5509 03:56:38,640 --> 03:56:40,520 FOCUSSED ON SPECIFICALLY 5510 03:56:40,520 --> 03:56:42,680 AUTISTIC ADULTS IS A NATURAL 5511 03:56:42,680 --> 03:56:44,920 EXTENSION OF WHAT YOU'VE DONE 5512 03:56:44,920 --> 03:56:46,920 WITH ADDM AND MOVING INTO THE 5513 03:56:46,920 --> 03:56:50,400 SHIFT AROUND ADOLESCENCE LOOKING 5514 03:56:50,400 --> 03:56:51,920 AT OLDER CHILDREN AS THEY AGE 5515 03:56:51,920 --> 03:56:53,040 INTO ADOLESCENT LIFE. 5516 03:56:53,040 --> 03:56:57,480 >> I APPRECIATE THE POINT AND 5517 03:56:57,480 --> 03:57:00,360 THANKS AGAIN DR. MAENNER FOR AN 5518 03:57:00,360 --> 03:57:01,720 EXCELLENT PRESENTATION AND 5519 03:57:01,720 --> 03:57:03,240 ENTERTAINING THESE THOUGHTS. 5520 03:57:03,240 --> 03:57:05,840 WE'LL HAVE AN OPPORTUNITY TO 5521 03:57:05,840 --> 03:57:07,360 REVISIT THE ISSUE AROUND 5522 03:57:07,360 --> 03:57:08,520 QUANTIFYING NEEDS FOR ADULTS AT 5523 03:57:08,520 --> 03:57:09,480 A LATER TIME. 5524 03:57:09,480 --> 03:57:11,360 WE'RE NOW GOING TO MOVE ON. 5525 03:57:11,360 --> 03:57:13,120 WE'RE ABOUT 10 MINUTES LATE AND 5526 03:57:13,120 --> 03:57:15,360 WE WERE DO TO TAKE A 15 MINUTE 5527 03:57:15,360 --> 03:57:17,920 BREAK SO I THINK WE DESPERATELY 5528 03:57:17,920 --> 03:57:18,880 NEED THIS ONE. 5529 03:57:18,880 --> 03:57:20,320 WE'LL TAKE 10 MINUTES NOW. 5530 03:57:20,320 --> 03:57:22,520 WE'LL START THE NEXT SESSION 5531 03:57:22,520 --> 03:57:24,680 FIVE MINUTES LATE SO IT'S 2:40. 5532 03:57:24,680 --> 03:57:26,400 SEE YOU BACK AT 2:50. 5533 03:57:26,400 --> 03:57:30,240 EVERYONE SHAKE A LEG DO WHAT YOU 5534 03:57:30,240 --> 03:57:54,160 NEED TO RESET YOURSELF. 5535 03:57:54,160 --> 03:57:54,600 >> HELLO, SUSAN. 5536 03:57:54,600 --> 03:57:55,520 READY TO START UP AGAIN? 5537 03:57:55,520 --> 03:57:57,160 >> YES. 5538 03:57:57,160 --> 03:57:59,120 >> FROM THE NEXT SEGMENT WE'LL 5539 03:57:59,120 --> 03:58:05,880 HAVE FROM DR. CATHY LORD THE 5540 03:58:05,880 --> 03:58:09,600 GEORGE TARJAN DISTINGUISHED 5541 03:58:09,600 --> 03:58:14,240 PROFESSOR AT UCLA DAVID GEFFEN 5542 03:58:14,240 --> 03:58:17,640 SCHOOL OF MEDICINE AND DR. LORD 5543 03:58:17,640 --> 03:58:19,680 WAS A MEMBER OF THE LANCET 5544 03:58:19,680 --> 03:58:20,960 COMMISSION ABOUT THE REPORT WE 5545 03:58:20,960 --> 03:58:22,040 HEARD A LITTLE BIT ABOUT SO FAR 5546 03:58:22,040 --> 03:58:24,080 AND PLEASED TO WELCOME HER HERE 5547 03:58:24,080 --> 03:58:26,960 TODAY TO UPDATE THIS COMMITTEE 5548 03:58:26,960 --> 03:58:29,480 AND ALL THE OBSERVERS OVER THE 5549 03:58:29,480 --> 03:58:31,160 INTERNET REGARDING THE CONTENT 5550 03:58:31,160 --> 03:58:35,400 FOR THAT REPORT AND IT'S MEANING 5551 03:58:35,400 --> 03:58:38,200 FOR THE FUTURE OF HEALTH CARE 5552 03:58:38,200 --> 03:58:38,720 AND RESEARCH. 5553 03:58:38,720 --> 03:58:39,920 >> I NEED PERMISSION TO SHARE MY 5554 03:58:39,920 --> 03:58:54,800 SCREEN. 5555 03:58:54,800 --> 03:58:56,200 HELLO, EVERYBODY. 5556 03:58:56,200 --> 03:58:57,920 I'M BEEN SITTING IN SINCE 7:00 5557 03:58:57,920 --> 03:58:59,480 THIS MORNING AND SO I'VE BEEN 5558 03:58:59,480 --> 03:59:04,560 VERY IMPRESSED WITH THE LEVEL OF 5559 03:59:04,560 --> 03:59:08,360 DISCUSSION AND PASSION AND 5560 03:59:08,360 --> 03:59:10,840 RESTRAINT PEOPLE HAVE EXERCISED. 5561 03:59:10,840 --> 03:59:16,400 THIS LIST JUST SHOWS YOU ALL THE 5562 03:59:16,400 --> 03:59:20,240 AUTHORS OF THE LANCET REPORT IT 5563 03:59:20,240 --> 03:59:21,240 TITLED IT AN INTERNATIONAL 5564 03:59:21,240 --> 03:59:21,920 PERSPECTIVE -- 5565 03:59:21,920 --> 03:59:23,680 >> I'M SORRY, WE'RE NOT SEEING 5566 03:59:23,680 --> 03:59:31,680 YOUR SLIDES. 5567 03:59:31,680 --> 03:59:33,440 >> OH NO. 5568 03:59:33,440 --> 03:59:33,640 OKAY. 5569 03:59:33,640 --> 03:59:39,840 LET'S SEE WHY NOT. 5570 03:59:39,840 --> 03:59:43,720 >> I ONLY SEE YOUR VIDEO NOT 5571 03:59:43,720 --> 03:59:47,000 THAT YOU'RE SHARING ANYTHING. 5572 03:59:47,000 --> 03:59:48,840 >> THEY'VE BLOCKED -- MAYBE 5573 03:59:48,840 --> 03:59:49,840 ANTHONY SHOULD GO AHEAD AND 5574 03:59:49,840 --> 03:59:50,160 SHARE THEM. 5575 03:59:50,160 --> 03:59:56,280 I CAN SEE THEM BUT I CAN'T EVEN 5576 03:59:56,280 --> 04:00:02,960 GET TO -- 5577 04:00:02,960 --> 04:00:05,480 >> THEN CONTROLS OVER TO YOU. 5578 04:00:05,480 --> 04:00:09,600 >> THEY WERE THERE A MOMENT. 5579 04:00:09,600 --> 04:00:12,400 >> SO LET'S SEE HOW I GET OUT OF 5580 04:00:12,400 --> 04:00:13,160 THEM TO SEE -- 5581 04:00:13,160 --> 04:00:14,000 >> THERE YOU GO. 5582 04:00:14,000 --> 04:00:16,400 WE CAN SEE THE SLIDES. 5583 04:00:16,400 --> 04:00:17,680 >> ALL RIGHT. 5584 04:00:17,680 --> 04:00:21,240 I WILL GO WITH THOSE SLIDES. 5585 04:00:21,240 --> 04:00:26,480 LET ME MAKE THIS BIGGER. 5586 04:00:26,480 --> 04:00:30,600 >> WE CAN SEE IT JUST FINE. 5587 04:00:30,600 --> 04:00:45,880 >> MINE IS TINY BUT IT'S OKAY. 5588 04:00:45,880 --> 04:00:47,800 WHAT I WANTED TO DO IS TELL YOU 5589 04:00:47,800 --> 04:00:50,040 A LITTLE BIT ABOUT THE PROCESS 5590 04:00:50,040 --> 04:00:53,280 SO I HAVE AN IDEA WHERE THESE 5591 04:00:53,280 --> 04:00:57,600 COME FROM. 5592 04:00:57,600 --> 04:01:03,720 I WAS ASKED TO SHARE -- CHAIR 5593 04:01:03,720 --> 04:01:07,720 THIS COMMISSION FROM LANCET AND 5594 04:01:07,720 --> 04:01:10,880 ANTHONY VOLUNTEERED TO CO-CHAIR 5595 04:01:10,880 --> 04:01:12,600 WITH ME WHICH IS GREAT AND TONY 5596 04:01:12,600 --> 04:01:17,160 AND I AND LANCET TRIED TO PUT 5597 04:01:17,160 --> 04:01:18,600 TOGETHER A COMMITTEE THAT 5598 04:01:18,600 --> 04:01:20,000 REFLECTED A RANGE OF 5599 04:01:20,000 --> 04:01:23,680 DISCIPLINES, COUNTRIES, 5600 04:01:23,680 --> 04:01:27,680 ETHNICITIES AND PERSPECTIVES. 5601 04:01:27,680 --> 04:01:31,720 THE GROUP ENDED UP COMING FROM 5602 04:01:31,720 --> 04:01:34,920 SIX CONTINENTS AND 13 DIFFERENT 5603 04:01:34,920 --> 04:01:36,520 DISCIPLINES AND HAD THREE IN 5604 04:01:36,520 --> 04:01:38,800 PERSON MEETINGS INCLUDING TWO 5605 04:01:38,800 --> 04:01:39,760 CONFERENCES THAT FOLLOWED 5606 04:01:39,760 --> 04:01:43,760 MEETINGS AT UCLA AND ONE IN 5607 04:01:43,760 --> 04:01:48,200 LONDON. 5608 04:01:48,200 --> 04:01:50,800 THE GROUP WHICH OVERALL HAD 32 5609 04:01:50,800 --> 04:01:51,920 MEMBERS DIVIDED INTO COMMITTEES 5610 04:01:51,920 --> 04:01:57,280 AND THEY PRESENTED THE OUTLINES 5611 04:01:57,280 --> 04:01:59,320 OF THE SECOND MEETING AND 5612 04:01:59,320 --> 04:02:00,160 POSSIBLE RECOMMENDATIONS AND 5613 04:02:00,160 --> 04:02:01,560 EVERYONE TALKED ABOUT THEM AND 5614 04:02:01,560 --> 04:02:02,760 WROTE THINGS BACK AND FORTH WITH 5615 04:02:02,760 --> 04:02:08,280 THE WHOLE GROUP AND THE NEXT 5616 04:02:08,280 --> 04:02:12,480 GROUP AND PRODUCED A FORMAL 5617 04:02:12,480 --> 04:02:14,480 FIRST DRAFT WHICH WAS THEN 5618 04:02:14,480 --> 04:02:15,400 REVIEWED BY REVIEWERS OUTSIDE 5619 04:02:15,400 --> 04:02:23,360 THE COMMITTEE. 5620 04:02:23,360 --> 04:02:25,120 SO WE THEN MORE REVISIONS AND 5621 04:02:25,120 --> 04:02:25,680 REVIEWS. 5622 04:02:25,680 --> 04:02:27,440 WE HAD TWO ROUNDS OF LANCET 5623 04:02:27,440 --> 04:02:29,160 EDITS BY PEOPLE WORKING FOR 5624 04:02:29,160 --> 04:02:31,680 LANCET AND THERE WAS A FINAL 5625 04:02:31,680 --> 04:02:36,040 LAUNCH AND PUBLICATION IN 5626 04:02:36,040 --> 04:02:39,360 DECEMBER 2021. 5627 04:02:39,360 --> 04:02:42,000 THIS WAS RAISED BY AUTISM 5628 04:02:42,000 --> 04:02:42,840 ADVOCACY ORGANIZATIONS AND NOT 5629 04:02:42,840 --> 04:02:45,800 FOR PROFIT FAMILY FOUNDATIONS 5630 04:02:45,800 --> 04:02:48,600 AND UCLA SUPPLIED SOME MONEY AND 5631 04:02:48,600 --> 04:02:50,040 NONE OF US WERE PAID FOR DOING 5632 04:02:50,040 --> 04:02:50,920 THIS AT ALL. 5633 04:02:50,920 --> 04:02:53,760 JUST TWO SIDE NOTES, HARD COPIES 5634 04:02:53,760 --> 04:02:56,160 WILL BE AVAILABLE IN THE SPRING. 5635 04:02:56,160 --> 04:02:58,600 I THINK THEY MADE -- I CAN'T 5636 04:02:58,600 --> 04:03:00,160 REMEMBER HOW MANY BUT LANCET IS 5637 04:03:00,160 --> 04:03:02,000 GOING TO PRODUCE SOME HARD 5638 04:03:02,000 --> 04:03:02,200 COPIES. 5639 04:03:02,200 --> 04:03:04,800 SO IF YOU'RE INTERESTED, LET ME 5640 04:03:04,800 --> 04:03:08,400 KNOW AND I'VE ALSO PROMISED TO 5641 04:03:08,400 --> 04:03:12,680 WRITE A PLAIN LANGUAGE VERSION 5642 04:03:12,680 --> 04:03:14,000 WHICH WILL GET DONE AS SOON AS I 5643 04:03:14,000 --> 04:03:17,760 CAN GET IT DONE AND WE'LL HAVE 5644 04:03:17,760 --> 04:03:19,160 OTHER PEOPLE REVIEW IT. 5645 04:03:19,160 --> 04:03:22,400 THE FIRST POINT IS THIS IS AN 5646 04:03:22,400 --> 04:03:23,120 INTERNATIONAL GROUP AND THE 5647 04:03:23,120 --> 04:03:25,720 FIRST MAIN THING PEOPLE WANTED 5648 04:03:25,720 --> 04:03:27,680 TO SAY AND IT'S HARD RIGHT NOW 5649 04:03:27,680 --> 04:03:28,600 WITH SO MUCH GOING ON CERTAINLY 5650 04:03:28,600 --> 04:03:29,720 IN THE UNITED STATES AND ALL 5651 04:03:29,720 --> 04:03:32,720 OVER THE WORLD, BUT THERE IS 5652 04:03:32,720 --> 04:03:34,280 SOME URGENCY IN ADDRESSING WAYS 5653 04:03:34,280 --> 04:03:36,640 TO IMPROVE THE LIVES OF ALL THE 5654 04:03:36,640 --> 04:03:39,680 PEOPLE WITH AUTISM IN THE WORLD 5655 04:03:39,680 --> 04:03:42,000 AND THEIR FAMILIES. 5656 04:03:42,000 --> 04:03:43,440 AND I THINK -- I'M PREACHING TO 5657 04:03:43,440 --> 04:03:45,080 THE CHOIR TALKING TO YOU ALL BUT 5658 04:03:45,080 --> 04:03:46,640 I THINK WHEN WE LOOK AT, FOR 5659 04:03:46,640 --> 04:03:49,120 EXAMPLE, HOW MUCH OF THE MONEY 5660 04:03:49,120 --> 04:03:52,960 RESEARCH MONEY IS SPENT, IT'S 5661 04:03:52,960 --> 04:03:55,800 PROVIDING VALUABLE INFORMATION 5662 04:03:55,800 --> 04:03:57,080 BUT NOT HAVING MUCH DIRECT 5663 04:03:57,080 --> 04:03:58,680 EFFECT ON LIVES OF PEOPLE WITH 5664 04:03:58,680 --> 04:04:01,600 AUTISM AND THEIR FAMILIES. 5665 04:04:01,600 --> 04:04:02,600 I THINK THE SECOND POINT IS 5666 04:04:02,600 --> 04:04:05,320 THERE IS A FAIR AMOUNT OF 5667 04:04:05,320 --> 04:04:07,160 EVIDENCE AND SCIENTIFIC DATA 5668 04:04:07,160 --> 04:04:10,240 THAT WE CAN USE BUT WE NEED TO 5669 04:04:10,240 --> 04:04:12,520 HAVE STRATEGIES FOR HOW DO WE 5670 04:04:12,520 --> 04:04:14,920 USE THAT DATA TO BETTER SEE WHAT 5671 04:04:14,920 --> 04:04:18,480 WE CAN DO TO SUPPORT SYSTEMS AND 5672 04:04:18,480 --> 04:04:21,280 INTERVENTIONS AND FOR WHOM, WHEN 5673 04:04:21,280 --> 04:04:23,440 AND WITH WHAT INTENSITY AS WELL 5674 04:04:23,440 --> 04:04:23,760 AS HOW. 5675 04:04:23,760 --> 04:04:26,760 PART IS BECAUSE AUTISM IS SO 5676 04:04:26,760 --> 04:04:32,000 HETEROGENEOUS AND GROUP DATA 5677 04:04:32,000 --> 04:04:34,160 ONLY GETS OUT SO FAR AND GOES 5678 04:04:34,160 --> 04:04:36,480 BACK TO MATTHEW'S POINT ABOUT 5679 04:04:36,480 --> 04:04:36,720 MEDIAN. 5680 04:04:36,720 --> 04:04:40,960 WE ACKNOWLEDGE AUTISM IS A 5681 04:04:40,960 --> 04:04:42,120 NEUROBIOLOGICAL CONDITION THAT 5682 04:04:42,120 --> 04:04:43,440 BASIC AND TRANSLATIONAL SCIENCE 5683 04:04:43,440 --> 04:04:46,680 EFFORTS ARE VERY IMPORTANT BUT I 5684 04:04:46,680 --> 04:04:49,080 THINK THE SIMPLE ANSWERS 50 5685 04:04:49,080 --> 04:04:51,000 YEARS AGO WE THOUGHT WE'D MIGHT 5686 04:04:51,000 --> 04:04:55,880 GET IF AUTISM WAS PRODUCED BY 5687 04:04:55,880 --> 04:04:57,640 THREE GENES AND CAN FIGURE WHAT 5688 04:04:57,640 --> 04:05:00,880 THOSE AND EVERYONE WITH THOSE 5689 04:05:00,880 --> 04:05:02,760 GENES COULD NOT EAT BROCCOLI HAS 5690 04:05:02,760 --> 04:05:05,160 NOT HAPPENED AND WE WANT TO CALL 5691 04:05:05,160 --> 04:05:07,600 ATTENTION TO THE FACT THE 5692 04:05:07,600 --> 04:05:09,400 CLINICAL CHALLENGES AUTISM RAISE 5693 04:05:09,400 --> 04:05:10,200 FOR SOCIETY AND AUTISTIC PEOPLE 5694 04:05:10,200 --> 04:05:13,240 AND THEIR FAMILIES ARE UNLIKELY 5695 04:05:13,240 --> 04:05:16,400 TO BE SOLVED BY BIO MEDICAL 5696 04:05:16,400 --> 04:05:18,960 SOLUTIONS FOR MOST PEOPLE IN THE 5697 04:05:18,960 --> 04:05:19,680 NEAR FUTURE. 5698 04:05:19,680 --> 04:05:22,640 OUR GROUP DECIDED TO FOCUS ON 5699 04:05:22,640 --> 04:05:23,800 RECOMMENDATIONS FOR THINGS THAT 5700 04:05:23,800 --> 04:05:25,120 IF PUT INTO EFFECT COULD MAKE A 5701 04:05:25,120 --> 04:05:26,600 DIFFERENCE IN THE NEXT FIVE 5702 04:05:26,600 --> 04:05:29,000 YEARS. 5703 04:05:29,000 --> 04:05:33,000 FOR THAT, WE WANTED TO FOCUS ON 5704 04:05:33,000 --> 04:05:33,600 TARGETED RESEARCH THAT CAN 5705 04:05:33,600 --> 04:05:35,440 CHANGE LIVES NOW BY IMPROVING 5706 04:05:35,440 --> 04:05:36,720 MENTAL AND PHYSICAL HEALTH OF 5707 04:05:36,720 --> 04:05:38,280 PEOPLE WITH AUTISM. 5708 04:05:38,280 --> 04:05:39,960 SO NOT NECESSARILY CHANGING CORE 5709 04:05:39,960 --> 04:05:41,800 FEATURES BUT TRYING TO FIGURE 5710 04:05:41,800 --> 04:05:43,680 OUT WHAT MAKES THE DIFFERENCE IN 5711 04:05:43,680 --> 04:05:45,400 STRENGTHENING SUPPORT SYSTEMS 5712 04:05:45,400 --> 04:05:46,960 AND AGAIN IT'S NOT LIKE AS 5713 04:05:46,960 --> 04:05:48,480 YOU'VE TALKED ABOUT ALL MORNING, 5714 04:05:48,480 --> 04:05:50,360 IT'S NOT LIKE NO ONE DOES THIS 5715 04:05:50,360 --> 04:05:52,920 ALREADY BUT TO DO THIS ON A 5716 04:05:52,920 --> 04:05:58,800 LARGER AND MORE FOCUSSED SCALE. 5717 04:05:58,800 --> 04:06:00,600 THAT TAKES INTO ACCOUNT 5718 04:06:00,600 --> 04:06:01,440 IMMEDIATE AND LONG-TERM AFFECTS 5719 04:06:01,440 --> 04:06:05,160 ON THE QUALITY OF LIFE FOR 5720 04:06:05,160 --> 04:06:06,120 AUTISTIC PEOPLE AND THEIR 5721 04:06:06,120 --> 04:06:07,800 FAMILIES AND I THINK BACK TO THE 5722 04:06:07,800 --> 04:06:10,240 COMMENT OF ONE MEMBERS WE'RE 5723 04:06:10,240 --> 04:06:11,920 FOCUSSING ON AUTISTIC PEOPLE BUT 5724 04:06:11,920 --> 04:06:13,920 WITH AUTISTIC PEOPLE COME 5725 04:06:13,920 --> 04:06:15,600 FAMILIES AND A VERY HIGH 5726 04:06:15,600 --> 04:06:17,200 PROPORTION OF AUTISTIC PEOPLE 5727 04:06:17,200 --> 04:06:18,600 ARE STILL VERY INVOLVED IN THEIR 5728 04:06:18,600 --> 04:06:19,200 FAMILIES AND WE DON'T WANT TO 5729 04:06:19,200 --> 04:06:22,040 FORGET THAT. 5730 04:06:22,040 --> 04:06:24,720 WE WANT TO FOCUS ON RESEARCH 5731 04:06:24,720 --> 04:06:26,320 THAT HAS IMMEDIATE IMPROVEMENTS 5732 04:06:26,320 --> 04:06:28,080 AND HOW ON EARTH DO WE GET THE 5733 04:06:28,080 --> 04:06:30,000 GOVERNMENT AND FUNDING AGENCIES 5734 04:06:30,000 --> 04:06:31,960 TO ACTUALLY DO THIS? 5735 04:06:31,960 --> 04:06:33,120 BECAUSE THERE'S A VERY 5736 04:06:33,120 --> 04:06:36,960 COMPLICATED SYSTEM AS WE WELL 5737 04:06:36,960 --> 04:06:38,640 KNOW THROUGH FEDERAL FUNDING NOT 5738 04:06:38,640 --> 04:06:47,000 JUST NIH BUT IN THE U.K. AND 5739 04:06:47,000 --> 04:06:48,800 AUSTRALIA AND SOUTH AMERICA. 5740 04:06:48,800 --> 04:06:50,560 THIS IS THE IDEA AUTISM 5741 04:06:50,560 --> 04:06:52,200 MANIFESTS DIFFERENTLY BETWEEN 5742 04:06:52,200 --> 04:06:53,400 INDIVIDUALS AND THERE'S HUGE 5743 04:06:53,400 --> 04:06:54,640 CHANGES WHICH YOU DON'T NEED ME 5744 04:06:54,640 --> 04:06:57,440 TO TALK ABOUT RIGHT NOW. 5745 04:06:57,440 --> 04:06:59,680 YOU KNOW BUT ALSO AUTISM 5746 04:06:59,680 --> 04:07:00,880 MANIFESTS DIFFERENTLY WITHIN 5747 04:07:00,880 --> 04:07:03,000 INDIVIDUALS ACROSS THE LIFE 5748 04:07:03,000 --> 04:07:03,560 SPAN. 5749 04:07:03,560 --> 04:07:06,600 IT'S A DEVELOPMENTAL CONDITION 5750 04:07:06,600 --> 04:07:07,680 AND PEOPLE NEED DIFFERENT 5751 04:07:07,680 --> 04:07:09,000 SUPPORTS AND CAN BENEFIT FROM 5752 04:07:09,000 --> 04:07:09,960 DIFFERENT INTERVENTIONS AT 5753 04:07:09,960 --> 04:07:13,200 DIFFERENT POINTS IN THEIR LIVES. 5754 04:07:13,200 --> 04:07:15,000 THE REALITY IS WE HAVE SEPARATE 5755 04:07:15,000 --> 04:07:19,160 STUDIES THAT ADDRESS, FOR 5756 04:07:19,160 --> 04:07:21,320 EXAMPLE, ADULTS AND KIDS AND NOT 5757 04:07:21,320 --> 04:07:22,560 A LOT OF INFORMATION OF WHAT 5758 04:07:22,560 --> 04:07:23,680 MIGHT WORK WITH A 2-YEAR-OLD OR 5759 04:07:23,680 --> 04:07:25,960 5-YEAR-OLD. 5760 04:07:25,960 --> 04:07:29,600 WE PROPOSE THE TERM PROFOUND 5761 04:07:29,600 --> 04:07:31,000 AUTISM, WHICH I'LL COME BACK TO. 5762 04:07:31,000 --> 04:07:34,240 HERE WE WERE INTO THE TRYING TO 5763 04:07:34,240 --> 04:07:35,560 CREATE CONTROVERSY BUT WE WERE 5764 04:07:35,560 --> 04:07:37,960 CONCERNED THAT SOMETIMES THE 5765 04:07:37,960 --> 04:07:41,600 NEEDS OF AUTISTIC CHILDREN AND 5766 04:07:41,600 --> 04:07:43,480 ADULTS WITH SEVERE INTELLECTUAL 5767 04:07:43,480 --> 04:07:44,680 AND COMMUNICATION DISABILITIES 5768 04:07:44,680 --> 04:07:45,800 WHO CAN'T SPEAK FOR THEMSELVES 5769 04:07:45,800 --> 04:07:48,560 AND NEED EXTENSIVE CARE 5770 04:07:48,560 --> 04:07:50,240 THROUGHOUT THEIR LIVES ARE NOT 5771 04:07:50,240 --> 04:07:52,080 ADDRESSED AS OFTEN AS WE WOULD 5772 04:07:52,080 --> 04:07:55,200 LIKE AND AS CAREFULLY. 5773 04:07:55,200 --> 04:07:56,960 WE ALSO WANT TO RECOGNIZE THOUGH 5774 04:07:56,960 --> 04:08:01,720 THAT MANY AUTISTIC PEOPLE HAVE 5775 04:08:01,720 --> 04:08:02,960 STRENGTHS THAT CONTRIBUTE TO 5776 04:08:02,960 --> 04:08:05,720 EVERY STEP OF SOCIETY AND THERE 5777 04:08:05,720 --> 04:08:08,840 IS AN IMPORTANCE TO VALUE AUTISM 5778 04:08:08,840 --> 04:08:09,600 AND NEURAL DIVERSITY WHICH 5779 04:08:09,600 --> 04:08:16,080 BENEFIT EVERYBODY. 5780 04:08:16,080 --> 04:08:17,840 BASICALLY WHAT IT SAYS IS LOTS 5781 04:08:17,840 --> 04:08:22,600 OF DIFFERENT ISSUES INTERACT 5782 04:08:22,600 --> 04:08:23,520 ACROSS DEVELOPMENT TO AFFECT 5783 04:08:23,520 --> 04:08:24,960 PEOPLE WITH AUTISM AND ACTUALLY 5784 04:08:24,960 --> 04:08:27,200 THIS IS PARTLY TRUE FOR 5785 04:08:27,200 --> 04:08:27,680 EVERYBODY. 5786 04:08:27,680 --> 04:08:30,440 BUT IT'S PARTICULARLY IMPORTANT 5787 04:08:30,440 --> 04:08:33,440 IN AUTISM BECAUSE IF YOU HAVE, 5788 04:08:33,440 --> 04:08:35,000 FOR EXAMPLE, UNUSUAL EXPERIENCES 5789 04:08:35,000 --> 04:08:38,240 AND YOU HAVE A BIOLOGICAL RISK 5790 04:08:38,240 --> 04:08:40,240 FOR HAVING PARTICULAR 5791 04:08:40,240 --> 04:08:42,040 DIFFICULTIES, THOSE EXPERIENCES 5792 04:08:42,040 --> 04:08:43,600 MAY RESULT IN GREATER 5793 04:08:43,600 --> 04:08:44,200 DIFFICULTIES THAN ARE REALLY 5794 04:08:44,200 --> 04:08:45,720 NECESSARY. 5795 04:08:45,720 --> 04:08:47,880 SO THE IDEA IS THAT AS YOU MOVE 5796 04:08:47,880 --> 04:08:55,080 FROM LEFT TO RIGHT AND ACROSS 5797 04:08:55,080 --> 04:08:56,680 TIME AND HAVE DIFFERENT 5798 04:08:56,680 --> 04:08:57,440 ENVIRONMENT AND EXPERIENCE 5799 04:08:57,440 --> 04:09:00,800 CAUSING DIFFERENT KINDS OF 5800 04:09:00,800 --> 04:09:05,200 DIFFICULTIES WHICH MIGHT INCLUDE 5801 04:09:05,200 --> 04:09:06,320 FOR EXAMPLE RESTRICTED ACCESS TO 5802 04:09:06,320 --> 04:09:09,720 JOBS OR LIMITED ACCESS TO DOING 5803 04:09:09,720 --> 04:09:13,640 SOMETHING, VOCATIONAL OR LEISURE 5804 04:09:13,640 --> 04:09:15,000 SKILLS FOR INCREASED RISK OF 5805 04:09:15,000 --> 04:09:17,680 OTHER KINDS OF MENTAL HEALTH 5806 04:09:17,680 --> 04:09:18,640 DIFFICULTIES. 5807 04:09:18,640 --> 04:09:20,680 OUR POINT WAS CHANGE IS 5808 04:09:20,680 --> 04:09:21,240 POSSIBLE. 5809 04:09:21,240 --> 04:09:23,680 I THINK NO ONE I THINK IN THIS 5810 04:09:23,680 --> 04:09:24,560 GROUP WOULD DISAGREE WITH ME 5811 04:09:24,560 --> 04:09:27,160 THAT OFTEN WE TAKE ABOUT AUTISM 5812 04:09:27,160 --> 04:09:29,480 AS A LIFE-LONG DISORDER BUT 5813 04:09:29,480 --> 04:09:30,440 SOMETIMES PEOPLE THINK THAT 5814 04:09:30,440 --> 04:09:31,760 MEANS NOTHING CAN GET BETTER AND 5815 04:09:31,760 --> 04:09:36,000 THAT IS JUST NOT TRUE. 5816 04:09:36,000 --> 04:09:37,640 WE HAVE A LOT OF EVIDENCE THERE 5817 04:09:37,640 --> 04:09:39,720 ARE WAYS OF MAKING THINGS BETTER 5818 04:09:39,720 --> 04:09:41,560 IN TERMS OF BOTH THE ENVIRONMENT 5819 04:09:41,560 --> 04:09:44,400 AND IN TERMS OF GIVING PEOPLE 5820 04:09:44,400 --> 04:09:46,760 SKILLS AND STRATEGIES THAT CAN 5821 04:09:46,760 --> 04:09:48,200 HELP THEM ADAPT TO THE 5822 04:09:48,200 --> 04:09:48,840 ENVIRONMENT AS WELL AS CHANGING 5823 04:09:48,840 --> 04:09:51,720 THE ENVIRONMENT. 5824 04:09:51,720 --> 04:09:54,160 THIS IS JUST A SUMMARY BY A 5825 04:09:54,160 --> 04:09:56,880 PAPER MANY OF YOU WILL HAVE SEEN 5826 04:09:56,880 --> 04:09:59,200 BY SAND BANK BUT THERE ARE LOTS 5827 04:09:59,200 --> 04:10:02,640 OF DATA PARTICULARLY ABOUT EARLY 5828 04:10:02,640 --> 04:10:04,640 INTERVENTIONS WITH YOUNG 5829 04:10:04,640 --> 04:10:04,920 CHILDREN. 5830 04:10:04,920 --> 04:10:07,520 AND SOME OF THESE INTERVENTIONS 5831 04:10:07,520 --> 04:10:11,680 HAVE EVEN BEEN ATTEMPTED IN 5832 04:10:11,680 --> 04:10:14,720 ORGANIZED RANDOMIZED CONTROL 5833 04:10:14,720 --> 04:10:17,000 TRIALS IN LOWER MIDDLE CLASS 5834 04:10:17,000 --> 04:10:17,240 COUNTRIES. 5835 04:10:17,240 --> 04:10:19,000 THERE'S ALSO PRETTY GOOD 5836 04:10:19,000 --> 04:10:22,400 AGREEMENT ABOUT HELPFUL 5837 04:10:22,400 --> 04:10:23,520 INTERVENTION STRATEGY. 5838 04:10:23,520 --> 04:10:25,120 LIKE SAM ODOM'S LIST OF THE 5839 04:10:25,120 --> 04:10:27,520 THINGS YOU CAN DO BUT LESS 5840 04:10:27,520 --> 04:10:28,520 AGREEMENT ON WHAT WORKS WHICH IS 5841 04:10:28,520 --> 04:10:45,320 REALLY INTERESTING. 5842 04:10:45,320 --> 04:10:48,800 AND EVERY DAY THERE'S DIAGNOSES 5843 04:10:48,800 --> 04:10:52,000 IN ADOLESCENTS AND ADULTS AND 5844 04:10:52,000 --> 04:10:52,760 ANYTHING TO THE RIGHT OF THE 5845 04:10:52,760 --> 04:11:00,000 LINE MEANS A SIGNIFICANTI ISISM -- 5846 04:11:00,000 --> 04:11:01,080 SIGNIFICANT IMPROVEMENT OVER THE 5847 04:11:01,080 --> 04:11:03,200 CONTROL GROUP AND MOST THE TIMES 5848 04:11:03,200 --> 04:11:05,080 THE CONTROL GROUPS ARE TREATMENT 5849 04:11:05,080 --> 04:11:05,960 AS USUAL. 5850 04:11:05,960 --> 04:11:07,480 IT'S NOT A DIFFERENT TREATMENT. 5851 04:11:07,480 --> 04:11:11,440 THOUGH ON THE WHOLE, WHAT WE 5852 04:11:11,440 --> 04:11:13,200 DON'T KNOW IS WE DON'T KNOW MUCH 5853 04:11:13,200 --> 04:11:14,200 ABOUT COMPARING TREATMENTS AND 5854 04:11:14,200 --> 04:11:16,440 PARTICULARLY WE DON'T KNOW ABOUT 5855 04:11:16,440 --> 04:11:19,320 MUCH ABOUT COMPARING TREATMENTS 5856 04:11:19,320 --> 04:11:20,000 FOR DIFFERENT POPULATION 5857 04:11:20,000 --> 04:11:20,600 AUTHORIZE SAME POPULATION AT A 5858 04:11:20,600 --> 04:11:29,720 DIFFERENT TIME. 5859 04:11:29,720 --> 04:11:33,480 IF WE KNEW THIS WE COULD BE MORE 5860 04:11:33,480 --> 04:11:36,440 EFFICIENT IN CREATING CULTURALLY 5861 04:11:36,440 --> 04:11:38,080 APPROPRIATE ADAPTATIONS AND 5862 04:11:38,080 --> 04:11:38,800 FIGURING OUT THE NEEDS OF 5863 04:11:38,800 --> 04:11:39,600 DIFFERENT COMMUNITIES. 5864 04:11:39,600 --> 04:11:41,320 IT'S NOT THAT WE WANTED TO HAVE 5865 04:11:41,320 --> 04:11:44,800 EVERYTHING BE THE SAME 5866 04:11:44,800 --> 04:11:46,080 EVERYWHERE, BUT IT'S ALSO THE 5867 04:11:46,080 --> 04:11:47,320 CASE, IF WE START OVER, FOR 5868 04:11:47,320 --> 04:11:48,520 EXAMPLE, THERE'S BEEN REPEATED 5869 04:11:48,520 --> 04:11:50,960 PUSH TO TRY TO COME UP WITH A 5870 04:11:50,960 --> 04:11:54,320 SINGLE QUESTIONNAIRE THAT'S 5871 04:11:54,320 --> 04:11:57,400 GOING TO DIAGNOSE AUTISM AT ANY 5872 04:11:57,400 --> 04:11:58,600 AGE, ANY LEVEL ANYWHERE IN THE 5873 04:11:58,600 --> 04:12:00,600 WORLD USED BY ANY PERSON AND 5874 04:12:00,600 --> 04:12:02,720 THERE'S ABSOLUTELY NO DATA THAT 5875 04:12:02,720 --> 04:12:04,000 SUGGESTS THAT WILL WORK EVEN 5876 04:12:04,000 --> 04:12:05,520 WITHIN THE U.S., U.K., SCANNED 5877 04:12:05,520 --> 04:12:08,520 KNAVE YEAH, WHEREVER. 5878 04:12:08,520 --> 04:12:09,800 -- SCANDINAVIA, WHEREVER. 5879 04:12:09,800 --> 04:12:11,000 WE SHOULD BE ABLE TO LEARN FROM 5880 04:12:11,000 --> 04:12:23,840 THAT AND SAY WHAT DOES WORK. 5881 04:12:23,840 --> 04:12:26,120 IT'S ALSO IMPORTANT THAT PEOPLE 5882 04:12:26,120 --> 04:12:27,280 WITH OTHER OF INTELLECTUAL 5883 04:12:27,280 --> 04:12:32,400 DISABILITIES OR PEOPLE WITH 5884 04:12:32,400 --> 04:12:34,000 MENTAL HEALTH PROBLEMS WE CAN 5885 04:12:34,000 --> 04:12:41,480 USE THE INFORMATION FROM THAT. 5886 04:12:41,480 --> 04:12:43,720 THERE'S THE QUESTION OF HOW DO 5887 04:12:43,720 --> 04:12:45,680 YOU PERSONALIZE CARE IN AUTISM 5888 04:12:45,680 --> 04:12:48,000 AND WE PROPOSED THE STEP CARE 5889 04:12:48,000 --> 04:12:50,200 PERSONALIZED HEALTH APPROACH. 5890 04:12:50,200 --> 04:12:51,760 AND I THINK ONE OF THE IMPORTANT 5891 04:12:51,760 --> 04:12:54,160 THINGS IS THERE'S BEEN STEP CARE 5892 04:12:54,160 --> 04:12:58,440 MODELS FOR YEARS BUT MOST OF 5893 04:12:58,440 --> 04:13:00,400 THESE ARE CREATED FROM THE POINT 5894 04:13:00,400 --> 04:13:01,200 OF VIEW OF THE PROVIDER FROM 5895 04:13:01,200 --> 04:13:02,320 HEALTH SYSTEMS. 5896 04:13:02,320 --> 04:13:06,560 HOW CAN WE CHEAPLY PROVIDE 5897 04:13:06,560 --> 04:13:08,920 SERVICES FOR PEOPLE WHO MAY BE 5898 04:13:08,920 --> 04:13:09,200 DEPRESSED. 5899 04:13:09,200 --> 04:13:10,960 LET'S FIRST HAVE THEM WATCH A 5900 04:13:10,960 --> 04:13:12,240 WEBINAR AND IF THEY'RE STILL 5901 04:13:12,240 --> 04:13:13,680 DEPRESSED LET'S HAVE THEM GET A 5902 04:13:13,680 --> 04:13:15,200 ZOOM SESSION AND THEN IF THEY'RE 5903 04:13:15,200 --> 04:13:17,600 DEPRESSED, MAYBE WE'LL SEE THEM 5904 04:13:17,600 --> 04:13:19,480 IN PERSON. 5905 04:13:19,480 --> 04:13:23,320 THIS IS DONE VERY MUCH FROM THE 5906 04:13:23,320 --> 04:13:24,760 COST EFFECTIVENESS OF THE 5907 04:13:24,760 --> 04:13:26,280 PROVIDER, NOT FROM THE 5908 04:13:26,280 --> 04:13:27,600 INDIVIDUAL. 5909 04:13:27,600 --> 04:13:28,600 IT'S ALSO IMPORTANT TO REMEMBER 5910 04:13:28,600 --> 04:13:31,240 MOST THE TIME WHEN PEOPLE TALK 5911 04:13:31,240 --> 04:13:35,680 ABOUT PRECISION MEDICINE OR 5912 04:13:35,680 --> 04:13:36,800 PERSONALIZED MEDICINE THEY'RE 5913 04:13:36,800 --> 04:13:38,160 NOT EVEN TALKING ABOUT WHOLE 5914 04:13:38,160 --> 04:13:41,040 PEOPLE BUT DOING GENETICS ON 5915 04:13:41,040 --> 04:13:42,600 SOMEBODY'S TUMOR AND THEN COMING 5916 04:13:42,600 --> 04:13:43,840 UP WITH AN APPROPRIATE MEDICAL 5917 04:13:43,840 --> 04:13:45,400 TREATMENT THAT ADDRESSES THAT 5918 04:13:45,400 --> 04:13:51,520 FORM OF CANCER NOT THAT PERSON. 5919 04:13:51,520 --> 04:13:54,320 AUTISM IS NOT A DISEASE, AS IT A 5920 04:13:54,320 --> 04:13:56,320 CONDITION THAT CAN CAUSE 5921 04:13:56,320 --> 04:13:58,480 IMPAIRMENT IN DAILY LIVING BUT 5922 04:13:58,480 --> 04:14:01,320 WITH A HUGE RANGE IN DEGREE AND 5923 04:14:01,320 --> 04:14:02,320 THE INDIVIDUAL PROFILE OF 5924 04:14:02,320 --> 04:14:04,240 CHILDREN, ADOLESCENTS AND ADULTS 5925 04:14:04,240 --> 04:14:06,160 AND THEIR FAMILY RESOURCES AND 5926 04:14:06,160 --> 04:14:07,920 THEIR COMMUNITY AND WHERE 5927 04:14:07,920 --> 04:14:10,240 THEY'RE FROM. 5928 04:14:10,240 --> 04:14:13,680 SO THE IDEA HERE WAS TO SHIFT 5929 04:14:13,680 --> 04:14:14,400 TRADITIONAL STEP CARE 5930 04:14:14,400 --> 04:14:17,360 PERSPECTIVE TO MOVE TO NOT JUST 5931 04:14:17,360 --> 04:14:18,480 TAKING INTO ACCOUNT HOW CHEAPLY 5932 04:14:18,480 --> 04:14:21,200 CAN THIS BE DONE FROM A 5933 04:14:21,200 --> 04:14:21,800 HOSPITAL'S POINT OF VIEW BUT 5934 04:14:21,800 --> 04:14:24,040 WHAT ARE THE PREFERENCES OF THE 5935 04:14:24,040 --> 04:14:26,160 INDIVIDUALS LOOKING FOR HELP. 5936 04:14:26,160 --> 04:14:27,800 WHAT IS THE BURDEN ON THE 5937 04:14:27,800 --> 04:14:29,760 INDIVIDUAL AND THE FAMILY AND 5938 04:14:29,760 --> 04:14:32,560 HOW CAN WE PERSONALIZE WHAT 5939 04:14:32,560 --> 04:14:35,680 WE'RE DOING AROUND INDIVIDUAL 5940 04:14:35,680 --> 04:14:37,800 AND FAMILY NEEDS DURING 5941 04:14:37,800 --> 04:14:38,120 CHALLENGES. 5942 04:14:38,120 --> 04:14:39,600 I THINK THE FIRST THING THAT 5943 04:14:39,600 --> 04:14:41,800 MEANS IS YOU NEED TO KNOW THAT 5944 04:14:41,800 --> 04:14:42,400 INFORMATION. 5945 04:14:42,400 --> 04:14:44,160 IT'S NOT SOMETHING THAT'S GOING 5946 04:14:44,160 --> 04:14:53,080 TO COME JUST WITH A DIAGNOSIS OF 5947 04:14:53,080 --> 04:14:53,320 AUTISM. 5948 04:14:53,320 --> 04:14:55,800 IT TELLS YOU VERY LITTLE ABOUT 5949 04:14:55,800 --> 04:14:56,800 THE SUPPORT AND TREATMENT 5950 04:14:56,800 --> 04:15:02,320 SOMEONE NEEDS GIVEN THE RANGE OF 5951 04:15:02,320 --> 04:15:06,360 KILLS -- SKILLS AND NEEDS A 5952 04:15:06,360 --> 04:15:09,320 PERSON NEEDS AND ONE OF THE 5953 04:15:09,320 --> 04:15:11,000 THINGS THAT BECAME APPARENT EVEN 5954 04:15:11,000 --> 04:15:14,320 FROM EUROPEAN COUNTRIES THAT 5955 04:15:14,320 --> 04:15:17,120 HAVE GOOD INITIAL ASSESSMENT 5956 04:15:17,120 --> 04:15:19,000 PROTOCOLS, IS THAT OFTEN KIDS 5957 04:15:19,000 --> 04:15:24,240 ARE SEEN ONCE AND GET A 5958 04:15:24,240 --> 04:15:26,640 DIAGNOSIS AND THAT'S IT AND THE 5959 04:15:26,640 --> 04:15:28,440 IDEA OF THE STEP CARE HEALTH 5960 04:15:28,440 --> 04:15:31,320 MODEL START WITH THE LEFT AND 5961 04:15:31,320 --> 04:15:32,360 CONSIDER WHAT ARE THE CONCERNS 5962 04:15:32,360 --> 04:15:35,600 OF THE FAMILY OR INDIVIDUAL IF 5963 04:15:35,600 --> 04:15:37,640 WE'RE TALKING ABOUT AN ADULT OR 5964 04:15:37,640 --> 04:15:38,800 ADOLESCENT OR OLDER CHILD. 5965 04:15:38,800 --> 04:15:40,720 WHAT IS IT WE WANT TO MAKE 5966 04:15:40,720 --> 04:15:40,960 BETTER. 5967 04:15:40,960 --> 04:15:44,440 THEN MOVE TO LOOKING AT 5968 04:15:44,440 --> 04:15:48,520 INDIVIDUAL FACTORS LIKE SAFETY, 5969 04:15:48,520 --> 04:15:50,280 AGE, PREFERENCES, SEVERITY OF 5970 04:15:50,280 --> 04:15:51,240 SYMPTOMS AND THEN ALSO BASIC 5971 04:15:51,240 --> 04:15:53,000 INFORMATION THAT WE KNOW DOES 5972 04:15:53,000 --> 04:15:55,160 MAKE A DIFFERENCE LIKE COGNITIVE 5973 04:15:55,160 --> 04:15:57,000 AND LANGUAGE SKILLS AND WHETHER 5974 04:15:57,000 --> 04:15:59,600 SOMEONE'S HAVING PROBLEMS AT 5975 04:15:59,600 --> 04:16:01,320 SCHOOL OR WORK OR HOME OR 5976 04:16:01,320 --> 04:16:03,560 EVERYTHING AND THEN STRENGTHS. 5977 04:16:03,560 --> 04:16:05,720 WE ALSO NEED TO CONSIDER FAMILY 5978 04:16:05,720 --> 04:16:07,840 FACTORS FOR MANY PEOPLE NOT AN 5979 04:16:07,840 --> 04:16:09,280 ADULT WHO IS COMPLETELY 5980 04:16:09,280 --> 04:16:11,360 INDEPENDENT IF THEY DON'T WANT 5981 04:16:11,360 --> 04:16:13,360 IT, BUT FOR PEOPLE THAT ARE VERY 5982 04:16:13,360 --> 04:16:16,640 INVOLVED IN THEIR FAMILIES AND 5983 04:16:16,640 --> 04:16:17,320 THIS INCLUDES PARTICULARLY 5984 04:16:17,320 --> 04:16:18,200 IMPORTANT ACROSS OTHER COUNTRIES 5985 04:16:18,200 --> 04:16:20,640 BUT WE TALKED ABOUT IT HERE 5986 04:16:20,640 --> 04:16:23,000 TODAY TOO ACCEPTANCE. 5987 04:16:23,000 --> 04:16:24,840 ARE PEOPLE ASHAMED OR 5988 04:16:24,840 --> 04:16:25,400 EMBARRASSED? 5989 04:16:25,400 --> 04:16:27,160 IS THERE STIGMA AND ALSO WHAT IS 5990 04:16:27,160 --> 04:16:31,400 GOING ON WITH THE REST OF THE 5991 04:16:31,400 --> 04:16:31,960 FAMILIES' LIVES? 5992 04:16:31,960 --> 04:16:37,320 THEN WE WANT TO MOVE TO THE IDEA 5993 04:16:37,320 --> 04:16:42,920 OF WE WANT TO CONSIDER FACTORS 5994 04:16:42,920 --> 04:16:44,800 THAT AFFECT FAMILIES AND 5995 04:16:44,800 --> 04:16:46,080 INDIVIDUALS AND SOMETHING HOME 5996 04:16:46,080 --> 04:16:47,840 BASED MAY BE EASIER FOR SOME 5997 04:16:47,840 --> 04:16:50,200 FAMILIES BUT DIFFICULT WITH A 5998 04:16:50,200 --> 04:16:51,680 FAMILY LIVING WITH A NUMBER OF 5999 04:16:51,680 --> 04:16:55,200 KIDS IN A TINY NEW YORK 6000 04:16:55,200 --> 04:16:55,440 APARTMENT. 6001 04:16:55,440 --> 04:16:57,440 SCHEDULES MAKE A DIFFERENCE AND 6002 04:16:57,440 --> 04:17:00,920 IF ADULTS ARE WORKING MAY NOT 6003 04:17:00,920 --> 04:17:04,000 WANT TO TAKE TIME OFF THEIR WORK 6004 04:17:04,000 --> 04:17:05,760 TO COME TALK TO ME AND FIGURING 6005 04:17:05,760 --> 04:17:07,000 OUT HOW TO SCHEDULE IT AND WHAT 6006 04:17:07,000 --> 04:17:09,400 CAN BE DONE AT SCHOOL. 6007 04:17:09,400 --> 04:17:11,680 A SIGNIFICANT QUESTION IS HOW 6008 04:17:11,680 --> 04:17:13,120 MUCH CAREGIVER EFFORT DO THINGS 6009 04:17:13,120 --> 04:17:16,560 TAKE AND IN SOME CASES 6010 04:17:16,560 --> 04:17:18,040 CAREGIVERS ARE DYING TO JUMP IN 6011 04:17:18,040 --> 04:17:19,520 AND WORK WITH THEIR KIDS AND IN 6012 04:17:19,520 --> 04:17:20,400 OTHER CASES CAN'T OR DON'T WANT 6013 04:17:20,400 --> 04:17:23,560 TO. 6014 04:17:23,560 --> 04:17:25,080 CONSIDERING THOSE FACTORS FROM 6015 04:17:25,080 --> 04:17:26,040 THE START IN TERMS OF 6016 04:17:26,040 --> 04:17:29,160 DETERMINING CARE. 6017 04:17:29,160 --> 04:17:35,760 JUST TO GIVE YOU A QUICK 6018 04:17:35,760 --> 04:17:40,240 EXAMPLE, WHEN WE DO THINGS FOR A 6019 04:17:40,240 --> 04:17:43,160 FAMILY WITH A MINIMALLY VERBAL 6020 04:17:43,160 --> 04:17:45,000 CHILD IN A MIDDLE CLASS FAMILY 6021 04:17:45,000 --> 04:17:47,680 SAY IN ARGENTINA, WE'LL START BY 6022 04:17:47,680 --> 04:17:50,800 TRYING TO FIGURE OUT SAFETY 6023 04:17:50,800 --> 04:17:51,520 ISSUES. 6024 04:17:51,520 --> 04:17:52,640 WANDERING AND CONCERNS ABOUT THE 6025 04:17:52,640 --> 04:17:55,480 CHILD ELOPING MAY BE A HIGH 6026 04:17:55,480 --> 04:17:55,800 PRIORITY. 6027 04:17:55,800 --> 04:18:01,200 WE'LL GO ON TO TRY TO FIGURE OUT 6028 04:18:01,200 --> 04:18:03,600 WHAT ARE THE SEVERITY OF THIS 6029 04:18:03,600 --> 04:18:05,000 CHILD'S SYMPTOMS, WHAT CAN THE 6030 04:18:05,000 --> 04:18:07,280 CHILD UNDERSTAND IN TERMS OF 6031 04:18:07,280 --> 04:18:07,560 LANGUAGE. 6032 04:18:07,560 --> 04:18:09,280 HOW DOES THIS CHILD COMMUNICATE 6033 04:18:09,280 --> 04:18:11,280 AND WHERE THE PROBLEMS. 6034 04:18:11,280 --> 04:18:13,000 IF THE CHILD IS DOING GREAT AT 6035 04:18:13,000 --> 04:18:14,240 HOME BUT WE'RE STRUGGLING TO 6036 04:18:14,240 --> 04:18:19,600 FIND A SCHOOL, THAT'S A 6037 04:18:19,600 --> 04:18:19,840 PRIORITY. 6038 04:18:19,840 --> 04:18:21,560 AND THEN WE'LL DETERMINE WHAT 6039 04:18:21,560 --> 04:18:23,200 ARE THE THINGS MOST EASILY 6040 04:18:23,200 --> 04:18:24,800 ACCEPTABLE NOT JUST FOR THE 6041 04:18:24,800 --> 04:18:26,240 MEDICAL OR SCHOOL SYSTEM BUT FOR 6042 04:18:26,240 --> 04:18:28,760 THE FAMILY. 6043 04:18:28,760 --> 04:18:30,040 WE WOULD DO SOMETHING QUITE 6044 04:18:30,040 --> 04:18:34,160 DIFFERENT WITH THE 15-YEAR-OLD 6045 04:18:34,160 --> 04:18:38,200 WITH EXTREME SOCIAL ANXIETY IN A 6046 04:18:38,200 --> 04:18:38,680 HIGH-INCOME COUNTRY. 6047 04:18:38,680 --> 04:18:40,840 SO HERE WE WOULD LOOK SIMILAR 6048 04:18:40,840 --> 04:18:42,800 THINGS BUT IN THIS CASE SAFETY 6049 04:18:42,800 --> 04:18:44,280 MAY NOT BE AN ISSUE. 6050 04:18:44,280 --> 04:18:50,280 HERE WE REALLY WANT TO KNOW IF 6051 04:18:50,280 --> 04:18:52,120 THE FAMILY IS SAYING GIVE US 6052 04:18:52,120 --> 04:18:52,800 MEDICINE. 6053 04:18:52,800 --> 04:18:54,240 WE'RE NOT DOING SOMETHING 6054 04:18:54,240 --> 04:18:54,800 BEHAVIORAL. 6055 04:18:54,800 --> 04:18:56,400 WHAT'S THE ADOLESCENT SAYING AND 6056 04:18:56,400 --> 04:18:58,880 WHAT DOES HE OR SHE WANT? 6057 04:18:58,880 --> 04:19:00,800 HOW MUCH IS THE YOUNG ADOLESCENT 6058 04:19:00,800 --> 04:19:02,680 WANT TO PARTICIPATE? 6059 04:19:02,680 --> 04:19:05,400 IS THIS PERSON REALLY DYING TO 6060 04:19:05,400 --> 04:19:06,880 MAKE FRIENDS OR ARE THEY LOOKING 6061 04:19:06,880 --> 04:19:10,760 FOR SUPPORT IN OTHER AREAS? 6062 04:19:10,760 --> 04:19:12,960 AND HOW CAN WE SUPPORT THIS 6063 04:19:12,960 --> 04:19:25,200 PARTICULAR ADOLESCENT? 6064 04:19:25,200 --> 04:19:28,360 IF WE ARE GOING TO DO THIS WE 6065 04:19:28,360 --> 04:19:30,000 NEED IT KNOW ABOUT THE THERAPY 6066 04:19:30,000 --> 04:19:32,200 AND GROUP DATA ARE JUST AT THE 6067 04:19:32,200 --> 04:19:32,440 BEGINNING. 6068 04:19:32,440 --> 04:19:34,000 WE NEED TO KNOW WHAT 6069 04:19:34,000 --> 04:19:35,720 INTERVENTIONS ARE EFFECTIVE FOR 6070 04:19:35,720 --> 04:19:38,000 WHOM, WHEN AND WHAT INTENSITY 6071 04:19:38,000 --> 04:19:39,120 AND FOR HOW LONG. 6072 04:19:39,120 --> 04:19:40,440 IDEALLY WE WOULD FIND OUT WHY 6073 04:19:40,440 --> 04:19:43,400 AND I THINK THAT WAS THE 6074 04:19:43,400 --> 04:19:45,600 GLORIOUS MISSION OF OUR DOCTOR 6075 04:19:45,600 --> 04:19:47,000 AND BIOLOGICAL MECHANISMS. 6076 04:19:47,000 --> 04:19:49,520 BUT IN THE MEANTIME WHILE WE'RE 6077 04:19:49,520 --> 04:19:51,080 TRYING TO FIGURE THAT OUT WE 6078 04:19:51,080 --> 04:19:55,200 NEED TO KNOW PRACTICAL THINGS. 6079 04:19:55,200 --> 04:19:58,680 IS AN HOUR A WEEK OF SPEECH 6080 04:19:58,680 --> 04:20:01,520 THERAPY PLENTY OR MEANINGLESS OR 6081 04:20:01,520 --> 04:20:02,520 DOES IT NEED TO BE MORE? 6082 04:20:02,520 --> 04:20:04,800 ARE THERE KIDS THAT REALLY NEED 6083 04:20:04,800 --> 04:20:08,040 30 OR 40 HOURS A WEEK OF AVA OR 6084 04:20:08,040 --> 04:20:09,600 KIDS THAT WOULD BENEFIT MUCH 6085 04:20:09,600 --> 04:20:11,680 MORE FROM SOMETHING ELSE? 6086 04:20:11,680 --> 04:20:12,600 THE 16 WEEKS OF PEERS. 6087 04:20:12,600 --> 04:20:20,240 CAN WE BUILD ON THAT? 6088 04:20:20,240 --> 04:20:24,000 AND THIS REQUIRES PERSONALIZED 6089 04:20:24,000 --> 04:20:25,400 KNOWLEDGE ABOUT A FAMILY OR 6090 04:20:25,400 --> 04:20:28,360 RESOURCES AND CMS A COUPLE WEEKS 6091 04:20:28,360 --> 04:20:31,720 AGO ANNOUNCED THEY WERE NOT 6092 04:20:31,720 --> 04:20:32,920 GOING TO LET ANYBODY DO 6093 04:20:32,920 --> 04:20:34,040 TELEHEALTH ON A FIRST VISIT. 6094 04:20:34,040 --> 04:20:36,600 THEY RESCINDED THAT ORDER BUT OF 6095 04:20:36,600 --> 04:20:37,880 COURSE OUR HOSPITAL INITIALLY 6096 04:20:37,880 --> 04:20:42,080 JUMPED ON IT AND SAID THAT WAS 6097 04:20:42,080 --> 04:20:43,400 TRUE FOR EVERYBODY EXCEPT 6098 04:20:43,400 --> 04:20:45,600 MEDICARE AND WHY? 6099 04:20:45,600 --> 04:20:46,920 ELDERLY PEOPLE GET HIGHER 6100 04:20:46,920 --> 04:20:49,320 PRIORITY FOR ME THAN PEOPLE WITH 6101 04:20:49,320 --> 04:20:49,640 DISABILITIES. 6102 04:20:49,640 --> 04:20:54,000 I DON'T GET IT. 6103 04:20:54,000 --> 04:20:54,600 THAT WAS THE IMMEDIATE 6104 04:20:54,600 --> 04:20:55,560 REPRESENTATION AV HOSPITAL AND 6105 04:20:55,560 --> 04:20:57,160 WOULD BE EASIER IF WE ALL STICK 6106 04:20:57,160 --> 04:20:59,400 TO THESE RESULTS THOUGH THEY'RE 6107 04:20:59,400 --> 04:21:02,280 IN DIRECT CONTRAST TO THE FACT 6108 04:21:02,280 --> 04:21:06,200 THAT IN SOME CASES, NOT ALL, WE 6109 04:21:06,200 --> 04:21:08,280 CAN DO TELETO ORGANIZE SOMEBODY 6110 04:21:08,280 --> 04:21:09,920 FOR AN ASSESSMENT OR TREATMENT 6111 04:21:09,920 --> 04:21:13,080 THAT'S MORE EFFECTIVE THAN 6112 04:21:13,080 --> 04:21:14,360 MAKING PEOPLE COME IN AND YET 6113 04:21:14,360 --> 04:21:16,200 THIS WAS COMPLETELY IGNORED 6114 04:21:16,200 --> 04:21:18,160 UNTIL WE HAD THE RESURGENCE OF 6115 04:21:18,160 --> 04:21:18,440 COVID. 6116 04:21:18,440 --> 04:21:21,680 WE ALSO DO NEED TO KNOW MORE 6117 04:21:21,680 --> 04:21:23,680 ABOUT WHAT'S FINANCIALLY 6118 04:21:23,680 --> 04:21:24,720 FEASIBLE BECAUSE THERE ARE KIDS 6119 04:21:24,720 --> 04:21:28,800 AND I THINK LESS SO ADULTS, WHO 6120 04:21:28,800 --> 04:21:29,640 GET PROBABLY MORE TREATMENT THAN 6121 04:21:29,640 --> 04:21:32,560 THEY REALLY NEED AND COULD USE 6122 04:21:32,560 --> 04:21:35,680 SUPPORT IN OTHER AREAS FOR 6123 04:21:35,680 --> 04:21:45,360 EXAMPLE. 6124 04:21:45,360 --> 04:21:47,960 IN HIGH INCOME COUNTRIES PUBLIC 6125 04:21:47,960 --> 04:21:50,040 SCHOOLS CAN'T EXCLUDE KIDS WITH 6126 04:21:50,040 --> 04:21:50,400 DISABILITIES. 6127 04:21:50,400 --> 04:21:53,200 SCHOOLS ARE OFTEN UNDER FUNDED 6128 04:21:53,200 --> 04:21:55,000 AND THERE'S A PROBLEM WITH 6129 04:21:55,000 --> 04:21:56,040 WORKFORCE CAPACITY BUT KIDS DO 6130 04:21:56,040 --> 04:21:58,000 HAVE TO BE SERVED THERE. 6131 04:21:58,000 --> 04:21:58,720 THAT IS NOT TRUE ACROSS THE 6132 04:21:58,720 --> 04:22:00,600 WORLD. 6133 04:22:00,600 --> 04:22:04,400 AND IN SOME COUNTRIES, THERE'S 6134 04:22:04,400 --> 04:22:05,840 NOTHING FOR KIDS OR THEY'RE 6135 04:22:05,840 --> 04:22:07,720 HIGHLY SPECIALIZED SCHOOLS THAT 6136 04:22:07,720 --> 04:22:08,960 ARE NOT GOOD AND NOT APPROPRIATE 6137 04:22:08,960 --> 04:22:11,720 FOR MANY OF THE PEOPLE THAT ENDS 6138 04:22:11,720 --> 04:22:12,200 UP THERE. 6139 04:22:12,200 --> 04:22:16,600 SO WE REALLY NEED A WAY TO 6140 04:22:16,600 --> 04:22:18,600 FIGURE OUT HOW AUTISTIC CHILDREN 6141 04:22:18,600 --> 04:22:20,760 ACROSS THE GLOBE CAN RECEIVE 6142 04:22:20,760 --> 04:22:21,320 GUARANTEED HIGH QUALITY 6143 04:22:21,320 --> 04:22:22,720 EDUCATION IN SCHOOLS AND WE NEED 6144 04:22:22,720 --> 04:22:27,120 TO KNOW MORE ABOUT WHAT IS DOES 6145 04:22:27,120 --> 04:22:28,280 THAT MEAN. 6146 04:22:28,280 --> 04:22:29,600 WE'RE ALSO SHORT OF PEOPLE 6147 04:22:29,600 --> 04:22:32,080 PROVIDING THESE SERVICES AND 6148 04:22:32,080 --> 04:22:33,960 MUCH OF THAT IS FINANCIAL. 6149 04:22:33,960 --> 04:22:36,120 IT'S THAT WE DON'T GENERATE 6150 04:22:36,120 --> 04:22:38,240 REVENUE AND IN THE MEDICAL 6151 04:22:38,240 --> 04:22:40,600 SYSTEM IF YOU HAVE SOMEBODY 6152 04:22:40,600 --> 04:22:41,760 SEEING AUTISTIC KIDS THEY'RE 6153 04:22:41,760 --> 04:22:42,800 COSTING MORE THAN THEY'RE 6154 04:22:42,800 --> 04:22:44,120 RESULTING IN MONEY AND THAT 6155 04:22:44,120 --> 04:22:46,360 MEANS HOSPITALS ARE NOT GOING TO 6156 04:22:46,360 --> 04:22:48,840 HIRE A LOT OF DEVELOPMENT 6157 04:22:48,840 --> 04:22:51,760 BEHAVIORAL PEDIATRICIANS OR 6158 04:22:51,760 --> 04:22:54,920 CLINICAL PSYCHOLOGISTS DOING 6159 04:22:54,920 --> 04:22:55,160 AUTISM. 6160 04:22:55,160 --> 04:22:56,400 THERE'S A CHALLENGE ALSO THAT 6161 04:22:56,400 --> 04:22:58,200 THE REALITY IS THAT MUCH OF THE 6162 04:22:58,200 --> 04:23:00,280 WORK IN AUTISM IS NOT GOING TO 6163 04:23:00,280 --> 04:23:01,000 BE DONE BY EXPERTS. 6164 04:23:01,000 --> 04:23:04,200 SO WE NEED TO FIGURE OUT HOW DO 6165 04:23:04,200 --> 04:23:06,760 WE HELP PEOPLE PROVIDE ADEQUATE 6166 04:23:06,760 --> 04:23:09,240 CARE WITH SUFFICIENT TRAINING 6167 04:23:09,240 --> 04:23:13,320 WHO ARE NOT JUST AUTISM PEOPLE. 6168 04:23:13,320 --> 04:23:15,200 AND WE NEED TO CONSIDER HOW DO 6169 04:23:15,200 --> 04:23:19,640 WE PUSH REI MBURSEMENT FOR 6170 04:23:19,640 --> 04:23:21,320 FUNDING MODELS AND THIS IS NOT 6171 04:23:21,320 --> 04:23:23,320 UNIQUE IN ANY WAY, THE LANCET, 6172 04:23:23,320 --> 04:23:25,360 OUR COMMISSION IS THE IDEA OF 6173 04:23:25,360 --> 04:23:27,920 TASK SHARING AND FIGURING OUT 6174 04:23:27,920 --> 04:23:31,120 WHO CAN DO THE WORK AND HOW DO 6175 04:23:31,120 --> 04:23:32,600 WE ENSURE THERE'S ADEQUATE 6176 04:23:32,600 --> 04:23:34,880 TRAINING AND SUPPORT TO HELP 6177 04:23:34,880 --> 04:23:38,280 THIS BE DONE MORE EFFICIENTLY. 6178 04:23:38,280 --> 04:23:41,080 I THINK IT'S REALLY IMPORTANT TO 6179 04:23:41,080 --> 04:23:43,600 REMEMBER THAT 95% OF CHILDREN 6180 04:23:43,600 --> 04:23:46,080 UNDER THE AGE OF 5 WITH 6181 04:23:46,080 --> 04:23:47,120 DEVELOPMENT DISABILITIES DO NOT 6182 04:23:47,120 --> 04:23:50,400 LIVE IN HIGH-INCOME COUNTRIES. 6183 04:23:50,400 --> 04:23:53,360 THEY LIVE IN LOWER AND MIDDLE 6184 04:23:53,360 --> 04:23:56,360 CLASS COUNTRIES AND ARE SERVICE 6185 04:23:56,360 --> 04:23:59,440 DESERTS WHERE KIDS CAN GET 6186 04:23:59,440 --> 04:23:59,800 ALMOST NOTHING. 6187 04:23:59,800 --> 04:24:01,400 I THINK EVEN IN THE UNITED 6188 04:24:01,400 --> 04:24:03,800 STATES, COVID HAS CERTAINLY 6189 04:24:03,800 --> 04:24:06,600 SHOWN US THE INEQUITIES IN 6190 04:24:06,600 --> 04:24:07,200 MEDICAL PROVISIONS ACROSS OUR 6191 04:24:07,200 --> 04:24:08,920 COUNTRY. 6192 04:24:08,920 --> 04:24:10,680 AND ONE OF THE ISSUES I THINK 6193 04:24:10,680 --> 04:24:11,840 WHICH I THINK SOMEBODY HAS 6194 04:24:11,840 --> 04:24:15,720 ALREADY RAISED IS THAT FOR 6195 04:24:15,720 --> 04:24:17,120 FAMILIES, AND FOR AUTISTIC 6196 04:24:17,120 --> 04:24:20,320 INDIVIDUALS WHO ARE INDEPENDENT, 6197 04:24:20,320 --> 04:24:21,200 THEY MAY BE SERVICE USERS 6198 04:24:21,200 --> 04:24:23,400 THEY'RE WHOLE LIFE AND NEED TO 6199 04:24:23,400 --> 04:24:27,600 KNOW HOW TO DO THIS AND DO THIS 6200 04:24:27,600 --> 04:24:29,280 EASILY SO YOU CAN GET THE 6201 04:24:29,280 --> 04:24:30,440 SERVICES TO WHICH THEY'RE 6202 04:24:30,440 --> 04:24:30,720 ENTITLED. 6203 04:24:30,720 --> 04:24:31,600 SO SOME OF THE RECOMMENDATIONS 6204 04:24:31,600 --> 04:24:33,560 WERE JUST THE NEED FOR SERVICE 6205 04:24:33,560 --> 04:24:34,760 SYSTEMS TO BE MORE RESPONSIVE. 6206 04:24:34,760 --> 04:24:37,640 WE HEARD A DISCUSSION OF THAT 6207 04:24:37,640 --> 04:24:40,240 WITH SSA THIS MORNING. 6208 04:24:40,240 --> 04:24:42,880 ALSO SERVICE SYSTEMS NEED TO 6209 04:24:42,880 --> 04:24:43,880 INTEGRATE EVIDENCE-BASED 6210 04:24:43,880 --> 04:24:45,760 INTERVENTIONS IN TO THEIR CARE 6211 04:24:45,760 --> 04:24:49,240 MODELS AND THIS IS NOT ROUTINELY 6212 04:24:49,240 --> 04:24:51,000 DONE IN MANY SERVICE SYSTEMS. 6213 04:24:51,000 --> 04:24:52,560 LOOK AT EARLY INTERVENTION. 6214 04:24:52,560 --> 04:24:54,000 THERE'S SOME THINGS THAT ARE 6215 04:24:54,000 --> 04:24:55,800 THERE AND SOME THINGS THAT ARE 6216 04:24:55,800 --> 04:24:56,640 NOT. 6217 04:24:56,640 --> 04:24:59,400 WE NEED MORE HIGH QUALITY 6218 04:24:59,400 --> 04:25:00,400 RESEARCH CONDUCTED IN LOWER AND 6219 04:25:00,400 --> 04:25:02,360 MIDDLE CLASS COUNTRIES TO 6220 04:25:02,360 --> 04:25:04,800 ADDRESS THE SCIENCE AND WE NEED 6221 04:25:04,800 --> 04:25:07,480 TO ENSURE EQUITABLE ACCESS TO 6222 04:25:07,480 --> 04:25:13,400 SERVICES FOR UNDER SERVED AND 6223 04:25:13,400 --> 04:25:14,160 MINORITIZED GROUPS AND THAT 6224 04:25:14,160 --> 04:25:16,400 INCLUDES GIRLS AND WOMEN AND 6225 04:25:16,400 --> 04:25:22,800 INCLUDES PEOPLE MINIMALLY VERBAL 6226 04:25:22,800 --> 04:25:26,360 AND LGBTQ AND RACIAL AND ETHNIC 6227 04:25:26,360 --> 04:25:26,640 MINORITIES. 6228 04:25:26,640 --> 04:25:28,200 SO RECOMMENDATIONS. 6229 04:25:28,200 --> 04:25:30,320 ONE OF THE RECOMMENDATIONS FROM 6230 04:25:30,320 --> 04:25:31,720 PEOPLE PARTICULARLY IN OTHER 6231 04:25:31,720 --> 04:25:34,720 COUNTRIES IS WE NEED FORMAL 6232 04:25:34,720 --> 04:25:35,440 DOCUMENTATION THROUGH 6233 04:25:35,440 --> 04:25:36,720 GOVERNMENT, MENTAL HEALTH CARE 6234 04:25:36,720 --> 04:25:37,360 EDUCATION AND SOCIAL SYSTEMS 6235 04:25:37,360 --> 04:25:38,320 WHICH I THINK IN THE U.S. WE 6236 04:25:38,320 --> 04:25:42,120 HAVE. 6237 04:25:42,120 --> 04:25:44,520 WE NEED GOVERNMENT AND HEALTH 6238 04:25:44,520 --> 04:25:46,400 CARE SYSTEMS TO RECOGNIZE THE 6239 04:25:46,400 --> 04:25:48,520 NEED FOR INTEGRATING ACROSS 6240 04:25:48,520 --> 04:25:49,640 SYSTEMS WHICH HEARD ABOUT ALL 6241 04:25:49,640 --> 04:25:50,320 MORNING. 6242 04:25:50,320 --> 04:25:52,280 THOUGH I THINK AS A PRACTITIONER 6243 04:25:52,280 --> 04:25:55,200 HOW YOU DO THAT IS REALLY TOUGH 6244 04:25:55,200 --> 04:25:57,920 BECAUSE THE MEDICAL SYSTEM IS 6245 04:25:57,920 --> 04:25:58,920 CERTAINLY NOT GEARED TOWARDS 6246 04:25:58,920 --> 04:26:00,280 DOING CASE COORDINATION. 6247 04:26:00,280 --> 04:26:02,600 AND THEN WE NEED FOCUSSED 6248 04:26:02,600 --> 04:26:06,000 RESEARCH STRATEGIES THAT 6249 04:26:06,000 --> 04:26:06,840 PRIORITIZE CLINICAL PRACTICE 6250 04:26:06,840 --> 04:26:08,120 THAT INCREASE THE UNDERSTANDING 6251 04:26:08,120 --> 04:26:11,240 OF WHAT INTERVENTIONS WORK FOR 6252 04:26:11,240 --> 04:26:12,960 WHOM, WHEN, HOW WITH WHAT 6253 04:26:12,960 --> 04:26:14,800 OUTCOMES AND AT WHAT COST AND 6254 04:26:14,800 --> 04:26:16,480 THAT'S SOMETHING I HAVEN'T HEARD 6255 04:26:16,480 --> 04:26:19,040 ABOUT IN THE DISCUSSIONS SO FAR. 6256 04:26:19,040 --> 04:26:21,080 IT HAPPENS ON THE SMALL BASE OF 6257 04:26:21,080 --> 04:26:21,920 GRANT HERE OR THERE. 6258 04:26:21,920 --> 04:26:27,600 THERE'S A PCORI GRANT AND 6259 04:26:27,600 --> 04:26:32,280 ANOTHER NIH GRANT BUT IN ORDER 6260 04:26:32,280 --> 04:26:39,560 TO DO THIS WE NEED LARGE SAMPLES 6261 04:26:39,560 --> 04:26:41,360 AT WHEN HAVING SOMETHING WORKS 6262 04:26:41,360 --> 04:26:43,120 AND HAVING A SMART DESIGN MOVING 6263 04:26:43,120 --> 04:26:43,880 FROM ONE TREATMENT TO ANOTHER 6264 04:26:43,880 --> 04:26:47,640 TREATMENT HAS NOT RESULTED IN 6265 04:26:47,640 --> 04:26:49,800 INFORMATION ABOUT WHO IT WORKS 6266 04:26:49,800 --> 04:26:50,200 FOR. 6267 04:26:50,200 --> 04:26:51,680 IT'S RESULTED IN INFORMATION 6268 04:26:51,680 --> 04:26:53,000 ABOUT A TREATMENT COMPARED TO 6269 04:26:53,000 --> 04:26:55,720 ANOTHER TREATMENT COMPARED TO 6270 04:26:55,720 --> 04:26:56,600 NOTHING. 6271 04:26:56,600 --> 04:26:58,800 WE'RE READY FOR MOVING ON AND 6272 04:26:58,800 --> 04:27:00,760 SAYING WHO DOES THIS WORK FOR 6273 04:27:00,760 --> 04:27:01,600 AND WHEN. 6274 04:27:01,600 --> 04:27:04,320 AND AGAIN AS WE'VE DISCUSSED 6275 04:27:04,320 --> 04:27:07,680 EQUITY AND ACCESS AND USE OF 6276 04:27:07,680 --> 04:27:11,680 SERVICES AND RESEARCH. 6277 04:27:11,680 --> 04:27:14,640 HERE'S THE PROFOUND AUTISM 6278 04:27:14,640 --> 04:27:14,840 THEME. 6279 04:27:14,840 --> 04:27:16,920 THE INTENTION OF THE GROUP WAS 6280 04:27:16,920 --> 04:27:18,560 NOT AT ALL TO BE NEGATIVE 6281 04:27:18,560 --> 04:27:20,280 TOWARDS PEOPLE SPEAKING ABOUT 6282 04:27:20,280 --> 04:27:23,640 AUTISM. 6283 04:27:23,640 --> 04:27:28,600 I THINK THE INTENTION WAS TO 6284 04:27:28,600 --> 04:27:31,000 MAKE SURE PEOPLE WITH SEVERE 6285 04:27:31,000 --> 04:27:32,600 NEEDS FOR SUPPORT GET 6286 04:27:32,600 --> 04:27:33,560 ACKNOWLEDGED AND SOMEONE ALWAYS 6287 04:27:33,560 --> 04:27:35,440 PAYS ATTENTION TO THEM AND FOR 6288 04:27:35,440 --> 04:27:38,160 EXAMPLE, ICD11, THERE'S GROUPS 6289 04:27:38,160 --> 04:27:39,240 OF SUBTYPES OF AUTISM. 6290 04:27:39,240 --> 04:27:41,880 THE REALITY IS IF YOU HAVE A 6291 04:27:41,880 --> 04:27:45,720 LIST OF 15 SUB TYPES ON THE 6292 04:27:45,720 --> 04:27:47,760 WHOLE, YOU'RE NOT PEOPLE ARE NOT 6293 04:27:47,760 --> 04:27:53,360 GOING TO USE IT AND ATTEND TO IT 6294 04:27:53,360 --> 04:27:56,920 WHEREAS HAVING A WORD DOES HELP. 6295 04:27:56,920 --> 04:27:59,040 IN ORDER TO DEFINE THIS WE 6296 04:27:59,040 --> 04:28:00,920 AGREED WHAT WE WERE TALKING 6297 04:28:00,920 --> 04:28:02,440 ABOUT WERE PEOPLE WHO NEED 6298 04:28:02,440 --> 04:28:04,720 24-HOUR ACCESS TO AN ADULT WHO 6299 04:28:04,720 --> 04:28:07,680 CAN CARE FOR THEM IF CONCERNS 6300 04:28:07,680 --> 04:28:08,160 ARISE. 6301 04:28:08,160 --> 04:28:10,200 SO SOMEBODY LIVING SOMEWHERE WHO 6302 04:28:10,200 --> 04:28:11,880 HAS SOMEBODY IN THE HOUSE THERE 6303 04:28:11,880 --> 04:28:14,600 IF THEY NEED HELP OR IF THEY 6304 04:28:14,600 --> 04:28:18,800 DECIDE THEY WANT TO WANDER. 6305 04:28:18,800 --> 04:28:20,560 AND SOMEBODY WHO CAN'T 6306 04:28:20,560 --> 04:28:22,240 NECESSARILY TAKE CARE OF THEIR 6307 04:28:22,240 --> 04:28:23,360 BASIC ADAPTIVE DAILY NEEDS. 6308 04:28:23,360 --> 04:28:27,640 WE ENDED UP COMING UP WITH USING 6309 04:28:27,640 --> 04:28:31,320 I.Q. OR VERY LIMITED LANGUAGE 6310 04:28:31,320 --> 04:28:32,880 BECAUSE THERE ARE DATA FOR THOSE 6311 04:28:32,880 --> 04:28:35,600 THAT ARE AVAILABLE IN LARGE 6312 04:28:35,600 --> 04:28:35,800 SAMPLES. 6313 04:28:35,800 --> 04:28:37,160 SO THAT'S WHERE THOSE CAME FROM 6314 04:28:37,160 --> 04:28:40,960 AND IF WE CAN COME UP WITH A 6315 04:28:40,960 --> 04:28:44,360 BETTER METRIC, I THINK ALL OF US 6316 04:28:44,360 --> 04:28:45,160 WOULD AGREE. 6317 04:28:45,160 --> 04:28:47,400 WE'RE AWARE IN THIS POPULATION 6318 04:28:47,400 --> 04:28:52,880 OF PEOPLE WHO HAVE I.Q.'S BELOW 6319 04:28:52,880 --> 04:28:56,120 50 OR HAVE LIMITED SPOKEN AND 6320 04:28:56,120 --> 04:28:57,560 RECEPTIVE LANGUAGE. 6321 04:28:57,560 --> 04:28:58,720 THAT'S THE DIFFERENCE BETWEEN 6322 04:28:58,720 --> 04:28:59,400 SOMEBODY WHO UNDERSTANDS BUT 6323 04:28:59,400 --> 04:29:02,800 CAN'T TALK WELL. 6324 04:29:02,800 --> 04:29:04,360 THERE ARE OFTEN COMPLEX 6325 04:29:04,360 --> 04:29:05,360 CO-OCCURRING DIFFICULTIES BUT 6326 04:29:05,360 --> 04:29:06,960 THESE DIFFICULTIES DO OCCUR AS 6327 04:29:06,960 --> 04:29:08,880 PEOPLE HAVE SAID IN OTHER 6328 04:29:08,880 --> 04:29:09,280 POPULATIONS. 6329 04:29:09,280 --> 04:29:11,600 THEY'RE NOT UNIQUE TO THIS GROUP 6330 04:29:11,600 --> 04:29:14,280 BUT THEY ARE MORE FREQUENT. 6331 04:29:14,280 --> 04:29:16,920 IT TURNS OUT THAT WE WERE ABLE 6332 04:29:16,920 --> 04:29:20,320 TO LOOK AT THREE DATA SETS. 6333 04:29:20,320 --> 04:29:23,040 WE WERE ABLE TO IDENTIFY IF WE 6334 04:29:23,040 --> 04:29:24,960 USE THE I.Q. BELOW 50 OR VERY 6335 04:29:24,960 --> 04:29:27,640 LIMITED LANGUAGE SO BASICALLY 6336 04:29:27,640 --> 04:29:31,680 SINGLE WORDS OR VERY REPETITIVE 6337 04:29:31,680 --> 04:29:32,280 PHRASES. 6338 04:29:32,280 --> 04:29:36,600 WE WERE ABLE TO IDENTIFY KIDS 6339 04:29:36,600 --> 04:29:39,000 AND PLACING SOMEONE IN THIS 6340 04:29:39,000 --> 04:29:47,720 GROUP FROM MID CHILDHOOD OR 6341 04:29:47,720 --> 04:29:48,920 LATER WAS STABLE TO ADULTHOOD 6342 04:29:48,920 --> 04:29:52,920 AND SUGGESTING THIS AS A 6343 04:29:52,920 --> 04:29:55,000 VOLUNTARY TERM AND WE'RE 6344 04:29:55,000 --> 04:29:56,400 CONCERNED ABOUT RESTRICTING 6345 04:29:56,400 --> 04:29:57,960 PEOPLE'S EXPERIENCE. 6346 04:29:57,960 --> 04:29:59,760 SO IT NEEDS TO BE -- IT NEEDS TO 6347 04:29:59,760 --> 04:30:01,400 BE CLEAR THIS COULD BE SOMETHING 6348 04:30:01,400 --> 04:30:03,240 YOU COULD NOT USE IF YOU DON'T 6349 04:30:03,240 --> 04:30:04,240 WANT IT OR CERTAINLY IF YOU 6350 04:30:04,240 --> 04:30:07,040 DON'T NEED IT. 6351 04:30:07,040 --> 04:30:11,040 BUT WHAT WE DID FIND IS THAT IN 6352 04:30:11,040 --> 04:30:13,760 THREE DIFFERENT SAMPLES WE HAD A 6353 04:30:13,760 --> 04:30:14,640 HUGE RANGE OF HOW MANY PEOPLE 6354 04:30:14,640 --> 04:30:17,720 FELL IN THIS CATEGORY AND 48%, I 6355 04:30:17,720 --> 04:30:19,760 CAN SAY IS FROM OUR EARLY 6356 04:30:19,760 --> 04:30:23,040 DIAGNOSIS STUDY WHICH IS KIDS 6357 04:30:23,040 --> 04:30:25,640 DIAGNOSED WITH AUTISM AT AGE 2 6358 04:30:25,640 --> 04:30:26,320 OVER 30 YEARS AGO. 6359 04:30:26,320 --> 04:30:29,800 SO IT DOES NOT REFLECT WHO IS 6360 04:30:29,800 --> 04:30:31,800 GETTING DIAGNOSED AT AGE 2 NOW 6361 04:30:31,800 --> 04:30:33,240 OR EVEN FOUR OR THE LATEST CDC 6362 04:30:33,240 --> 04:30:35,320 DATA. 6363 04:30:35,320 --> 04:30:36,760 I THINK ONE IMPORTANT THING THAT 6364 04:30:36,760 --> 04:30:42,160 CAME OUT THOUGH IN DOING THIS IS 6365 04:30:42,160 --> 04:30:50,040 MOBA IS EPIDEMIOLOGICAL STUDY IN 6366 04:30:50,040 --> 04:30:52,760 NORWAY THEY STUDIED PREGNANCIES 6367 04:30:52,760 --> 04:30:55,280 FROM WOMEN FROM ULTRASOUND AT 16 6368 04:30:55,280 --> 04:30:56,240 WEEKS SO SOME KIDS ARE ACTUALLY 6369 04:30:56,240 --> 04:30:59,000 20 NOW. 6370 04:30:59,000 --> 04:31:00,520 AND ONE OF THE INTERESTING 6371 04:31:00,520 --> 04:31:02,600 THINGS THERE WAS IN FREQUENTLY 6372 04:31:02,600 --> 04:31:04,120 IN SCANDINAVIA, REGISTRIES ARE 6373 04:31:04,120 --> 04:31:07,560 USED TO IDENTIFY WHO HAS AUTISM 6374 04:31:07,560 --> 04:31:10,400 BUT REGISTRIES ARE PRIMARILY 6375 04:31:10,400 --> 04:31:12,600 POPULATED BY PHYSICIANS PUTTING 6376 04:31:12,600 --> 04:31:15,320 IN THE DIAGNOSIS. 6377 04:31:15,320 --> 04:31:16,640 WHAT WE FOUND IN THE DATA WAS IF 6378 04:31:16,640 --> 04:31:19,320 WE LOOK AT REGISTRIES, THERE'S 6379 04:31:19,320 --> 04:31:21,000 HARDLY ANYBODY FALLS IN PROFOUND 6380 04:31:21,000 --> 04:31:23,840 AUTISM BUT WE ACTUALLY HAVE DATA 6381 04:31:23,840 --> 04:31:27,160 FROM EARLY CHILDHOOD WITH KIDS 6382 04:31:27,160 --> 04:31:30,560 WERE SEEN FOR DIAGNOSIS AND THAT 6383 04:31:30,560 --> 04:31:31,440 RAISED THE LEVEL OF POPULATION 6384 04:31:31,440 --> 04:31:35,680 AND WHEN WE FOLLOWED UP THOSE 6385 04:31:35,680 --> 04:31:38,000 KIDS TO ABOUT 18%. 6386 04:31:38,000 --> 04:31:41,040 THE POINT THERE IS THOSE KIDS 6387 04:31:41,040 --> 04:31:42,320 ARE NOT GETTING IN REGISTRIES 6388 04:31:42,320 --> 04:31:45,120 AND WHO THEY ARE ARE KIDS WITH 6389 04:31:45,120 --> 04:31:48,080 AUTISM AND SEVERE INTELLECTUAL 6390 04:31:48,080 --> 04:31:50,560 DISABILITY BUT WHO PROBABLY GET 6391 04:31:50,560 --> 04:31:53,920 SERVICES THROUGH VARIOUS WHAT 6392 04:31:53,920 --> 04:31:56,360 THEY CALL HABILITATION IN 6393 04:31:56,360 --> 04:31:58,000 SCANDINAVIA AND NEVER EVEN MAKE 6394 04:31:58,000 --> 04:32:02,840 IT INTO PSYCHIATRY. 6395 04:32:02,840 --> 04:32:04,320 SO ONE OF THE IMPORTANT THINGS 6396 04:32:04,320 --> 04:32:05,840 IS THEY ARE KIDS LOST TO 6397 04:32:05,840 --> 04:32:07,720 RESEARCH AND WE NEED TO BE 6398 04:32:07,720 --> 04:32:10,000 CONSCIOUS OF WAIT A MINUTE, 6399 04:32:10,000 --> 04:32:11,200 WHERE DID THEY GO? 6400 04:32:11,200 --> 04:32:13,200 OUR GOAL IN HAVING THIS TERM NOT 6401 04:32:13,200 --> 04:32:17,360 AT ALL TO EXCLUDE OTHER PEOPLE 6402 04:32:17,360 --> 04:32:19,480 BUT TO AT LEAST BEGIN TO 6403 04:32:19,480 --> 04:32:23,040 IDENTIFY THIS IS A GROUP OFTEN 6404 04:32:23,040 --> 04:32:25,000 NOT INCLUDED UP RESEARCH BECAUSE 6405 04:32:25,000 --> 04:32:29,600 THEY CAN'T SIT THROUGH IMAGING 6406 04:32:29,600 --> 04:32:30,960 FOR EXAMPLE. 6407 04:32:30,960 --> 04:32:32,000 THERE'S MANY THINGS THEY CAN'T 6408 04:32:32,000 --> 04:32:34,320 DO AND IT'S HARDER TO WORK WITH 6409 04:32:34,320 --> 04:32:34,520 THEM. 6410 04:32:34,520 --> 04:32:35,400 SO THEY COST MORE MONEY AND TAKE 6411 04:32:35,400 --> 04:32:40,960 MORE TIME. 6412 04:32:40,960 --> 04:32:43,720 AND THEY DESERVE BEING ABLE TO 6413 04:32:43,720 --> 04:32:47,280 IMPROVE THE QUALITY OF THEIR 6414 04:32:47,280 --> 04:32:48,120 LIVES AS MUCH AS ANYBODY ELSE 6415 04:32:48,120 --> 04:32:50,240 AND I DON'T THINK ANYBODY WOULD 6416 04:32:50,240 --> 04:32:54,200 ARGUE WITH ME AND TO SUMMARIZE 6417 04:32:54,200 --> 04:32:58,000 WE RECOGNIZE PERSONALALIZED 6418 04:32:58,000 --> 04:32:58,760 DEVELOPMENTAL INTERVENTIONS OVER 6419 04:32:58,760 --> 04:33:01,000 THE LIFE COURSE AND NEED TO 6420 04:33:01,000 --> 04:33:02,000 INCLUDE IMPLEMENTATION SCIENCE 6421 04:33:02,000 --> 04:33:03,760 AND SEE WHAT IS BEING USED 6422 04:33:03,760 --> 04:33:07,320 OUTSIDE OF ACADEMIA AND HOW 6423 04:33:07,320 --> 04:33:09,560 EFFECTIVE ARE THINGS IN THE 6424 04:33:09,560 --> 04:33:10,280 COMMUNITY PARTICULARLY 6425 04:33:10,280 --> 04:33:13,200 CONTRASTING WHAT MAKES THE MOST 6426 04:33:13,200 --> 04:33:14,400 SENSE TO DIFFERENT SUB GROUPS OR 6427 04:33:14,400 --> 04:33:17,120 AT LEAST DIFFERENT PEOPLE IN 6428 04:33:17,120 --> 04:33:17,520 DIFFERENT STRATA. 6429 04:33:17,520 --> 04:33:20,280 WE NEED COST EFFECTIVENESS 6430 04:33:20,280 --> 04:33:21,840 RESEARCH TO SUPPORT THIS 6431 04:33:21,840 --> 04:33:23,600 DECISION MAKING AND WE NEED TO 6432 04:33:23,600 --> 04:33:26,000 INCLUDE STAKEHOLDERS IN FIGURING 6433 04:33:26,000 --> 04:33:29,640 THIS OUT AND DEVELOPING NEW AND 6434 04:33:29,640 --> 04:33:32,280 BETTER INTERVENTION AND WE NEED 6435 04:33:32,280 --> 04:33:34,280 TO OFFER THE POSSIBILITY OF 6436 04:33:34,280 --> 04:33:36,680 CULTURALLY ADAPTED AND TAILORED 6437 04:33:36,680 --> 04:33:37,280 INVENTION APPROACHES BECAUSE 6438 04:33:37,280 --> 04:33:38,520 THINGS ARE GOING TO BE DIFFERENT 6439 04:33:38,520 --> 04:33:40,000 IN DIFFERENT COUNTRIES IN 6440 04:33:40,000 --> 04:33:44,400 DIFFERENT PLACES AND WE NEED 6441 04:33:44,400 --> 04:33:47,160 LARGE SAMPLES AND THE USE OF 6442 04:33:47,160 --> 04:33:48,000 ADVANCE RESEARCH DESIGNS TO 6443 04:33:48,000 --> 04:33:50,120 ANSWER COMPLEX QUESTIONS. 6444 04:33:50,120 --> 04:33:51,960 I WANTED TO END WITH THE SLIDE. 6445 04:33:51,960 --> 04:33:57,000 THE SLIDE IS THE IDEA THAT 6446 04:33:57,000 --> 04:33:58,640 PEOPLE CAN REACH CERTAIN LEVELS 6447 04:33:58,640 --> 04:34:01,160 OF INDEPENDENCE AND THAT'S GOING 6448 04:34:01,160 --> 04:34:02,680 TO BE DIFFERENT FOR PEOPLE WHO 6449 04:34:02,680 --> 04:34:03,680 HAVE DIFFERENT LEVELS OF 6450 04:34:03,680 --> 04:34:07,160 CONSECUTIVE ABILITY. 6451 04:34:07,160 --> 04:34:08,920 BUT HOW MUCH SUPPORT THEY GET IN 6452 04:34:08,920 --> 04:34:10,160 THEIR SOCIETY WILL MAKE A 6453 04:34:10,160 --> 04:34:13,160 DIFFERENCE THERE AND IF WE MOVE 6454 04:34:13,160 --> 04:34:16,160 TO A SOCIETY THAT DOESN'T EVEN 6455 04:34:16,160 --> 04:34:19,120 FIND KIDS TO A SOCIETY THAT 6456 04:34:19,120 --> 04:34:20,600 IDENTIFIES POPULATIONS BUT 6457 04:34:20,600 --> 04:34:21,800 DOESN'T PROVIDE AS GOOD SERVICES 6458 04:34:21,800 --> 04:34:23,800 AND ALL THE WAY UP, WE CAN DO 6459 04:34:23,800 --> 04:34:28,600 BETTER FOR EVERYBODY FOR PEOPLE 6460 04:34:28,600 --> 04:34:30,440 WHO HAVE VERY LIMITED COGNITIVE 6461 04:34:30,440 --> 04:34:32,280 SKILLS AND HIGH COGNITIVE SKILLS 6462 04:34:32,280 --> 04:34:34,000 AND EVERYONE IN THE MIDDLE. 6463 04:34:34,000 --> 04:34:35,600 WE WANT TO HAVE A MESSAGE OF 6464 04:34:35,600 --> 04:34:37,000 HOPE IF WE WORK TOGETHER WE 6465 04:34:37,000 --> 04:34:43,200 COULD DO A BETTER JOB OF USING 6466 04:34:43,200 --> 04:34:48,000 WHAT KNOWLEDGE WE HAVE AND APPLY 6467 04:34:48,000 --> 04:34:50,120 IT TO OTHER MENTAL HEALTH 6468 04:34:50,120 --> 04:34:50,680 CONDITIONS. 6469 04:34:50,680 --> 04:34:52,000 WE CAN DO THIS TOGETHER AND THIS 6470 04:34:52,000 --> 04:34:53,840 IS THE PERFECT GROUP TO PRESENT 6471 04:34:53,840 --> 04:34:55,160 THIS TO AND I'M HAPPY TO ANSWER 6472 04:34:55,160 --> 04:34:55,800 QUESTIONS. 6473 04:34:55,800 --> 04:35:03,280 THANK YOU. 6474 04:35:03,280 --> 04:35:05,200 >> THANK YOU, DR. LORD. 6475 04:35:05,200 --> 04:35:11,840 THAT WAS CLEAR AND POWERFULLY 6476 04:35:11,840 --> 04:35:12,160 ARTICULATED. 6477 04:35:12,160 --> 04:35:14,120 NOW WE'LL OPEN IT UP FOR MEMBERS 6478 04:35:14,120 --> 04:35:14,400 OF THE IACC. 6479 04:35:14,400 --> 04:35:21,080 PLEASE. 6480 04:35:21,080 --> 04:35:22,920 >> DENA. 6481 04:35:22,920 --> 04:35:23,720 >> THANK YOU FOR AN INCREDIBLE 6482 04:35:23,720 --> 04:35:29,000 AMOUNT OF WORK YOU'RE TEAM DID 6483 04:35:29,000 --> 04:35:35,720 HERE ON ON THIS. 6484 04:35:35,720 --> 04:35:38,160 I'M IMPRESSED WITH IT. 6485 04:35:38,160 --> 04:35:40,400 ONE OF MY COLLEAGUES HAS 6486 04:35:40,400 --> 04:35:45,440 BREACHED A QUESTION I'M CURIOUS 6487 04:35:45,440 --> 04:35:49,920 ABOUT AS WELL. 6488 04:35:49,920 --> 04:35:52,120 IN LOOKING AT THE 32 6489 04:35:52,120 --> 04:35:53,800 PARTICIPANTS IT SEEMED THERE 6490 04:35:53,800 --> 04:35:55,840 WERE NO AUTISTIC RESEARCHERS 6491 04:35:55,840 --> 04:35:59,320 THAT PUBLICLY IDENTIFY AND 6492 04:35:59,320 --> 04:36:05,000 DEFINITELY NOBODY FROM NSAR AND 6493 04:36:05,000 --> 04:36:07,000 JUST A DISPROPORTIONATE 6494 04:36:07,000 --> 04:36:07,800 REPRESENTATION OF AUTISTIC 6495 04:36:07,800 --> 04:36:08,240 VOICES. 6496 04:36:08,240 --> 04:36:10,000 I KNOW THERE WERE A FEW PEOPLE 6497 04:36:10,000 --> 04:36:13,880 AS STAKEHOLDERS THERE AND MY 6498 04:36:13,880 --> 04:36:15,480 COLLEAGUE ASKED ABOUT A QUESTION 6499 04:36:15,480 --> 04:36:18,480 ABOUT PEOPLE OF COLOR CHOSEN FOR 6500 04:36:18,480 --> 04:36:18,800 THIS. 6501 04:36:18,800 --> 04:36:20,880 SO AGAIN I JUST WANT TO CHAMPION 6502 04:36:20,880 --> 04:36:22,680 YOU FOR THESE LAST TWO ARTICLES 6503 04:36:22,680 --> 04:36:25,440 ACTUALLY THE FIRST ONE ON AUTISM 6504 04:36:25,440 --> 04:36:27,640 IN NATURE WAS BRILLIANT AS WELL 6505 04:36:27,640 --> 04:36:28,880 BUT WONDERING HOW YOU MIGHT 6506 04:36:28,880 --> 04:36:31,120 ADDRESS THAT FOR OUR 6507 04:36:31,120 --> 04:36:31,720 CONSTITUENTS BECAUSE THEY'RE 6508 04:36:31,720 --> 04:36:31,960 ASKING. 6509 04:36:31,960 --> 04:36:33,560 >> NO, IT'S A FAIR QUESTION. 6510 04:36:33,560 --> 04:36:38,960 I THINK THERE WERE THREE PEOPLE 6511 04:36:38,960 --> 04:36:44,360 WHO IDENTIFIED WITH AUTISM WHO 6512 04:36:44,360 --> 04:36:45,400 WERE INVOLVED IN ADVOCACY ON THE 6513 04:36:45,400 --> 04:36:46,920 COMMITTEE AND WE WERE TRYING TO 6514 04:36:46,920 --> 04:36:51,880 RECRUIT PEOPLE FROM DIFFERENT 6515 04:36:51,880 --> 04:36:54,200 PERSPECTIVES. 6516 04:36:54,200 --> 04:36:59,960 ALEX AND MARINA WHO IS A 6517 04:36:59,960 --> 04:37:02,320 RESEARCHER AND JAMES CUSACK. 6518 04:37:02,320 --> 04:37:03,320 SO MAYBE WE SHOULD HAVE HAD 6519 04:37:03,320 --> 04:37:03,880 MORE. 6520 04:37:03,880 --> 04:37:09,560 I MEAN, YOU CAN IMAGINE THERE 6521 04:37:09,560 --> 04:37:11,320 WERE ALSO TWO AFRICAN AMERICAN 6522 04:37:11,320 --> 04:37:18,680 PEOPLE AND TWO LATINEX PEOPLE 6523 04:37:18,680 --> 04:37:22,080 AND ALL SORTS OF -- ACTUALLY 6524 04:37:22,080 --> 04:37:22,640 PEOPLE REPRESENTING OTHER 6525 04:37:22,640 --> 04:37:28,600 ETHNICITIES WHO WERE NOT WHITE. 6526 04:37:28,600 --> 04:37:30,680 YOU'RE RIGHT. 6527 04:37:30,680 --> 04:37:32,480 I THINK IT'S QUITE DIFFICULT 6528 04:37:32,480 --> 04:37:35,640 WHEN TO PUT TOGETHER A COMMITTEE 6529 04:37:35,640 --> 04:37:37,680 THAT PLEASES EVERYBODY. 6530 04:37:37,680 --> 04:37:40,400 I THINK AS I KNOW MORE I 6531 04:37:40,400 --> 04:37:41,400 DEFINITELY MIGHT HAVE CHANGED 6532 04:37:41,400 --> 04:37:43,040 THINGS SLIGHTLY BUT WE WERE 6533 04:37:43,040 --> 04:37:44,760 TRYING TO MAKE EVERYBODY HAPPY 6534 04:37:44,760 --> 04:37:46,400 INCLUDING LANCET. 6535 04:37:46,400 --> 04:37:51,560 SO IT'S A VALID POINT. 6536 04:37:51,560 --> 04:37:54,160 I THINK WE REALLY BENEFIT FROM 6537 04:37:54,160 --> 04:37:56,400 MARINA WHO IS A MOTHER OF 6538 04:37:56,400 --> 04:37:59,040 AUTISTIC KIDS AND HAS AUTISM 6539 04:37:59,040 --> 04:38:02,800 HERSELF WHO IS NOT A 6540 04:38:02,800 --> 04:38:04,880 PROFESSIONAL ADVOCATE BUT SHE 6541 04:38:04,880 --> 04:38:07,440 HAS A Ph.D. AND VERY BRIGHT 6542 04:38:07,440 --> 04:38:10,000 WOMAN FROM ARGENTINA. 6543 04:38:10,000 --> 04:38:12,320 ALEX, WHO HAS HIS OWN 6544 04:38:12,320 --> 04:38:15,120 PERSPECTIVE AND KNOWS A LOT OF 6545 04:38:15,120 --> 04:38:17,560 PEOPLE AND IS VERY INTERESTED IN 6546 04:38:17,560 --> 04:38:19,280 COMMUNICATION AND JAMES CUSACK 6547 04:38:19,280 --> 04:38:20,880 WHO ALSO DOESN'T DO RESEARCH 6548 04:38:20,880 --> 04:38:22,200 ANYMORE BUT IS A Ph.D.. 6549 04:38:22,200 --> 04:38:25,640 I THINK THEY WERE VERY IMPORTANT 6550 04:38:25,640 --> 04:38:27,400 PARTS TO THIS GROUP BUT THERE 6551 04:38:27,400 --> 04:38:30,040 WERE THREE OF THEM. 6552 04:38:30,040 --> 04:38:34,000 THE GROUP ALSO IS PROBLEM TLI -- 6553 04:38:34,000 --> 04:38:35,200 PROBABLY THE GROUP WE STARTED 6554 04:38:35,200 --> 04:38:36,720 WITH AND ADDED ON PEOPLE AS WE 6555 04:38:36,720 --> 04:38:38,280 NEEDED HELP. 6556 04:38:38,280 --> 04:38:40,920 SO ABOUT THE LAST FIVE PEOPLE OR 6557 04:38:40,920 --> 04:38:43,360 SO ARE PEOPLE THAT WERE RUNNING 6558 04:38:43,360 --> 04:38:45,960 AROUND WRITING SECTIONS AND 6559 04:38:45,960 --> 04:38:47,000 MAKING TABLES, ETCETERA. 6560 04:38:47,000 --> 04:38:53,400 IT'S A FAIR COMMENT. 6561 04:38:53,400 --> 04:38:56,560 >> THANK YOU, CATHY. 6562 04:38:56,560 --> 04:38:58,880 >> HELEN. 6563 04:38:58,880 --> 04:39:01,800 >> I'D LIKE TO FOCUS ON THE 6564 04:39:01,800 --> 04:39:03,680 CONTENT OF THE REPORT AND 6565 04:39:03,680 --> 04:39:04,320 PARTICULARLY YOUR PRESENTATION 6566 04:39:04,320 --> 04:39:07,800 WHICH I THOUGHT WAS A TOUR DE 6567 04:39:07,800 --> 04:39:10,800 FORCE AND A COUPLE OF THE KEY 6568 04:39:10,800 --> 04:39:14,400 POINTS YOU MADE REALLY IS 6569 04:39:14,400 --> 04:39:18,280 SOMETHING OUR COMMITTEE NEEDS TO 6570 04:39:18,280 --> 04:39:21,720 GRAPPLE WITH AND IT'S BUBBLING 6571 04:39:21,720 --> 04:39:27,680 BELOW THE SURFACE BUT WE HAVE A 6572 04:39:27,680 --> 04:39:29,800 VERY EFFECTIVE WAY OF TREATING 6573 04:39:29,800 --> 04:39:34,480 KIDS WITH AUTISM USING 6574 04:39:34,480 --> 04:39:35,000 BEHAVIORAL INTERVENTIONS. 6575 04:39:35,000 --> 04:39:37,320 IT WOULD BE LOW HANGING FRUIT TO 6576 04:39:37,320 --> 04:39:40,840 ADDRESS THAT CRITICAL ISSUE THAT 6577 04:39:40,840 --> 04:39:42,000 YOU BROUGHT UP. 6578 04:39:42,000 --> 04:39:43,720 IT DOESN'T WORK FOR EVERYBODY 6579 04:39:43,720 --> 04:39:47,720 BUT IT DOES WORK FOR THE VAST 6580 04:39:47,720 --> 04:39:49,440 MAJORITY OF KIDS. 6581 04:39:49,440 --> 04:39:50,000 WE THINK. 6582 04:39:50,000 --> 04:39:55,200 BUT WHO EXACTLY AND HOW AND WHEN 6583 04:39:55,200 --> 04:39:56,000 AND WHERE? 6584 04:39:56,000 --> 04:39:58,400 THOSE ARE CRITICAL QUESTIONS. 6585 04:39:58,400 --> 04:40:00,120 IT'S JUST SHOCKING TO ME, FOR 6586 04:40:00,120 --> 04:40:03,640 EXAMPLE, IN THE LAST RFA FOR THE 6587 04:40:03,640 --> 04:40:06,200 AUTISM CENTERS OF EXCELLENCE, 6588 04:40:06,200 --> 04:40:07,680 TREATMENT WAS NOT EVEN MENTIONED 6589 04:40:07,680 --> 04:40:15,200 ONCE. 6590 04:40:15,200 --> 04:40:19,680 YOUR CALL FOR LARGE SCALE 6591 04:40:19,680 --> 04:40:21,840 STUDIES TO ADDRESS THIS BROAD 6592 04:40:21,840 --> 04:40:24,000 ISSUE OF BEHAVIORAL 6593 04:40:24,000 --> 04:40:24,600 INTERVENTIONS FROM A 6594 04:40:24,600 --> 04:40:26,360 PERSONALIZED APPROACH IS 6595 04:40:26,360 --> 04:40:29,240 CRITICAL BECAUSE IT SEEMS TO ME 6596 04:40:29,240 --> 04:40:33,040 THE WAY YOU PRESENT IT WITH 6597 04:40:33,040 --> 04:40:37,480 SKRFTSI INING -- 6598 04:40:39,880 --> 04:40:41,000 THE CURRENT INDIVIDUALS ACROSS 6599 04:40:41,000 --> 04:40:43,520 THE LIFE SPAN RIGHT NOW BECAUSE 6600 04:40:43,520 --> 04:40:46,920 WE ARE INVESTING SO MUCH IN THE 6601 04:40:46,920 --> 04:40:47,800 PERSONALIZED INTERVENTIONS THAT 6602 04:40:47,800 --> 04:40:50,400 TARGETS GENETIC THERAPIES AS YOU 6603 04:40:50,400 --> 04:40:52,720 SAY ARE NOT GOING TO BE REALIZED 6604 04:40:52,720 --> 04:40:57,280 FOR QUITE A LONG TIME. 6605 04:40:57,280 --> 04:41:00,160 I THINK THAT'S SOMETHING WE ALL 6606 04:41:00,160 --> 04:41:03,480 DISH THINK WE ALL COULD BRING BE 6607 04:41:03,480 --> 04:41:06,960 BROUGHT TOGETHER ON THIS 6608 04:41:06,960 --> 04:41:07,400 COMMITTEE. 6609 04:41:07,400 --> 04:41:08,680 WE'RE DIVIDED ON A LOT OF 6610 04:41:08,680 --> 04:41:11,440 FACTORS BUT FOCUSSING ON WHAT IS 6611 04:41:11,440 --> 04:41:15,320 IT WE CAN DO RESEARCH WISE THAT 6612 04:41:15,320 --> 04:41:18,640 WOULD BRING THE BEHAVIORAL 6613 04:41:18,640 --> 04:41:21,480 INTERVENTIONS TO THE NEXT LEVEL 6614 04:41:21,480 --> 04:41:25,240 THAT WE NEED IN THE WAY YOU 6615 04:41:25,240 --> 04:41:25,520 DESCRIBED. 6616 04:41:25,520 --> 04:41:28,400 THANKS FOR ALL YOUR WORK, CATHY. 6617 04:41:28,400 --> 04:41:34,200 I KNOW HOW MUCH THIS HAS TAKEN 6618 04:41:34,200 --> 04:41:36,040 FROM YOU AND THE WORK OF THE 6619 04:41:36,040 --> 04:41:38,160 COMMITTEE IS TO BE COMMENDED. 6620 04:41:38,160 --> 04:41:51,080 >> SAM. 6621 04:41:51,080 --> 04:41:54,920 >> I ALSO WANTED TO ADD ON THAT 6622 04:41:54,920 --> 04:42:02,400 I THINK IT'S IMPORTANT IN FUTURE 6623 04:42:02,400 --> 04:42:04,880 WORK TO INCLUDE PEOPLE WHO DO 6624 04:42:04,880 --> 04:42:09,680 HAVE HIGH SUPPORT NEEDS AND NEED 6625 04:42:09,680 --> 04:42:14,400 TO USE AN AAC WHO HAVE 6626 04:42:14,400 --> 04:42:14,960 INTELLECTUAL DISABILITIES 6627 04:42:14,960 --> 04:42:20,920 BECAUSE IN MY EXPERIENCE WHEN I 6628 04:42:20,920 --> 04:42:23,640 HAVE COME TO THE CONCLUSION A 6629 04:42:23,640 --> 04:42:28,040 SINGLE SPECTRUM OF MILD TO 6630 04:42:28,040 --> 04:42:33,360 PROFOUND IS NOT THE CORRECT WAY 6631 04:42:33,360 --> 04:42:38,440 TO REFER TO AUTISTIC PEOPLE I'M 6632 04:42:38,440 --> 04:42:44,400 SPEAKING FROM LISTENING TO THE 6633 04:42:44,400 --> 04:42:49,560 EXPERIENCES OF ACU USERS AND 6634 04:42:49,560 --> 04:42:54,520 PEOPLE WHO NEED SIGNIFICANT 6635 04:42:54,520 --> 04:42:55,120 ASSIST JANSANCE WHO EXPRESSED 6636 04:42:55,120 --> 04:42:55,720 CONCERN ABOUT THAT KIND OF 6637 04:42:55,720 --> 04:43:00,200 LANGUAGE. 6638 04:43:00,200 --> 04:43:02,040 IT'S IMPORTANT TO INCLUDE THAT. 6639 04:43:02,040 --> 04:43:06,280 WE HAVE MEMBERS OF IACC RIGHT 6640 04:43:06,280 --> 04:43:11,800 NOW AND IVANOV AND HARI IS AN 6641 04:43:11,800 --> 04:43:19,120 ACU USER AND IVANOVA IS A PERSON 6642 04:43:19,120 --> 04:43:22,920 WITH INTELLECTUAL DISABILITY AND 6643 04:43:22,920 --> 04:43:28,400 THEY'VE EXPRESSED QUITE WELL 6644 04:43:28,400 --> 04:43:32,400 THEIR CONCERN IF THOSE NEEDS ARE 6645 04:43:32,400 --> 04:43:34,320 LUMPED TOGETHER INTO SOMETHING 6646 04:43:34,320 --> 04:43:37,240 CALLED PROFOUND AUTISM IT 6647 04:43:37,240 --> 04:43:39,680 OBSCURES WHAT PEOPLE ACTUALLY DO 6648 04:43:39,680 --> 04:43:39,960 NEED. 6649 04:43:39,960 --> 04:43:45,800 >> WE DID AND WE DID HAVE 6650 04:43:45,800 --> 04:43:50,600 PARENTS OF PEOPLE WITH AND WE 6651 04:43:50,600 --> 04:43:55,080 DIDN'T HAVE ANY INDIVIDUALS. 6652 04:43:55,080 --> 04:43:56,080 >> THAT CAN PROVIDE A DIFFERENT 6653 04:43:56,080 --> 04:44:01,760 PERSPECTIVE. 6654 04:44:01,760 --> 04:44:03,320 >> THANKS, SAM. 6655 04:44:03,320 --> 04:44:04,000 JENNIFER. 6656 04:44:04,000 --> 04:44:06,840 >> HI, JENNIFER JOHNSON WITH THE 6657 04:44:06,840 --> 04:44:07,480 ADMINISTRATION FOR COMMUNITY 6658 04:44:07,480 --> 04:44:09,640 LIVING AT HHS. 6659 04:44:09,640 --> 04:44:10,960 THANK YOU FOR THE OVERVIEW. 6660 04:44:10,960 --> 04:44:15,400 IT WAS VERY THOROUGH AND 6661 04:44:15,400 --> 04:44:15,640 DETAILED. 6662 04:44:15,640 --> 04:44:17,320 I APPRECIATE THE INFORMATION. 6663 04:44:17,320 --> 04:44:21,120 THE RECOMMENDATIONS IN YOUR 6664 04:44:21,120 --> 04:44:23,280 DISCUSSION SEEM TO FOCUS ON THE 6665 04:44:23,280 --> 04:44:28,520 INDIVIDUAL AND SORT OF THE 6666 04:44:28,520 --> 04:44:31,720 INDIVIDUAL'S IMMEDIATE 6667 04:44:31,720 --> 04:44:36,760 ENVIRONMENT AND HOW RESOURCES 6668 04:44:36,760 --> 04:44:38,120 IMPACT THEIR EXPERIENCE WHICH 6669 04:44:38,120 --> 04:44:39,680 MAKES SENSE AND THE WAYS IN 6670 04:44:39,680 --> 04:44:42,240 WHICH AUTISM IS EXPERIENCED BY 6671 04:44:42,240 --> 04:44:42,800 DIFFERENT INDIVIDUALS. 6672 04:44:42,800 --> 04:44:45,720 BUT I WONDER ABOUT THE EXTENT TO 6673 04:44:45,720 --> 04:44:51,280 WHICH THE DISCUSSIONS ADDRESSED 6674 04:44:51,280 --> 04:44:52,000 SYSTEM ISSUES AND THE 6675 04:44:52,000 --> 04:44:53,480 INTERACTION BETWEEN THE 6676 04:44:53,480 --> 04:44:55,440 INDIVIDUAL AND THE SYSTEM THAT 6677 04:44:55,440 --> 04:45:00,400 ULTIMATELY DESIGNS THE SERVICES 6678 04:45:00,400 --> 04:45:02,360 THAT THE INDIVIDUAL IS RECEIVING 6679 04:45:02,360 --> 04:45:05,080 AND I'M CURIOUS ABOUT WHAT WE 6680 04:45:05,080 --> 04:45:06,960 HEAR ABOUT ISSUES OF 6681 04:45:06,960 --> 04:45:07,800 INTERSECTIONALITY AND 6682 04:45:07,800 --> 04:45:09,160 INDIVIDUALS WHO COME FROM 6683 04:45:09,160 --> 04:45:10,160 DIFFERENT DIVERSE BACKGROUNDS 6684 04:45:10,160 --> 04:45:11,840 EXPERIENCE THE SERVICE SYSTEM 6685 04:45:11,840 --> 04:45:13,200 AND THE SYSTEM THAT DESIGNS 6686 04:45:13,200 --> 04:45:15,720 THOSE SERVICES DIFFERENTLY FROM 6687 04:45:15,720 --> 04:45:18,800 THE RIGHT MAJORITY. 6688 04:45:18,800 --> 04:45:22,000 AND THERE DON'T TO BE MANY 6689 04:45:22,000 --> 04:45:22,800 RECOMMENDATIONS AIMED AT 6690 04:45:22,800 --> 04:45:24,880 RESEARCHING THE SYSTEM AND 6691 04:45:24,880 --> 04:45:26,400 RESEARCHING IT THROUGH THE 6692 04:45:26,400 --> 04:45:28,240 INTERSECTIONAL LENS AND IF WE 6693 04:45:28,240 --> 04:45:31,200 DID, BETTER UNDERSTAND THE 6694 04:45:31,200 --> 04:45:33,560 SYSTEM AND SYSTEMS AND SERVICES 6695 04:45:33,560 --> 04:45:35,200 THROUGH THE INTERSECTIONAL LENS 6696 04:45:35,200 --> 04:45:37,200 AND IF WE BETTER UNDERSTOOD THAT 6697 04:45:37,200 --> 04:45:39,080 COULD WE CREATE BETTER EQUITIES 6698 04:45:39,080 --> 04:45:41,280 AND OUTCOMES FOR INDIVIDUALS WHO 6699 04:45:41,280 --> 04:45:43,840 COME FROM DIVERSE BACKGROUNDS. 6700 04:45:43,840 --> 04:45:46,840 I'M WONDERING IF YOU CAN SPEAK 6701 04:45:46,840 --> 04:45:48,000 TO WHICH THE COMMITTEE LOOKED AT 6702 04:45:48,000 --> 04:45:52,080 THE ISSUES AND IT SEEMS LIKE IT 6703 04:45:52,080 --> 04:45:52,920 MIGHT BE THERE A LITTLE BIT BUT 6704 04:45:52,920 --> 04:45:55,720 NOT AS OFTEN AS THE 6705 04:45:55,720 --> 04:45:56,360 RECOMMENDATIONS THAT WENT TO 6706 04:45:56,360 --> 04:45:58,600 INDIVIDUAL SERVICES AND 6707 04:45:58,600 --> 04:45:59,200 SUPPORTS. 6708 04:45:59,200 --> 04:46:00,200 >> YOU'RE ABSOLUTELY RIGHT. 6709 04:46:00,200 --> 04:46:04,000 I THINK WE DID TALK ABOUT 6710 04:46:04,000 --> 04:46:04,280 SERVICES. 6711 04:46:04,280 --> 04:46:08,720 WE HAD A NUMBER OF MEMBERS WHO 6712 04:46:08,720 --> 04:46:09,600 WERE SUPPOSED TO REPRESENT 6713 04:46:09,600 --> 04:46:11,360 SERVICES THAT BAILED ON US. 6714 04:46:11,360 --> 04:46:12,600 I THINK WHAT YOU SEE REPRESENTS 6715 04:46:12,600 --> 04:46:15,240 THE KNOWLEDGE OF THIS COMMITTEE. 6716 04:46:15,240 --> 04:46:17,160 IT ISN'T AT ALL THAT SERVICES 6717 04:46:17,160 --> 04:46:18,960 AND SYSTEMS ARE NOT IMPORTANT. 6718 04:46:18,960 --> 04:46:21,480 YOU ARE ABSOLUTELY RIGHT. 6719 04:46:21,480 --> 04:46:23,680 I THINK WE JUST ENDED UP 6720 04:46:23,680 --> 04:46:26,360 STICKING TO WHAT WE FELT ENOUGH 6721 04:46:26,360 --> 04:46:28,720 TO SAY SOMETHING SENSIBLE ABOUT. 6722 04:46:28,720 --> 04:46:37,520 YOU ARE COMPLETELY RIGHT. 6723 04:46:37,520 --> 04:46:39,120 AND FOR IMPLEMENTATION AND 6724 04:46:39,120 --> 04:46:40,960 ASPECTS OF SYSTEMS I KNOW LITTLE 6725 04:46:40,960 --> 04:46:43,720 ABOUT EXCEPT AS A PARTICIPANT. 6726 04:46:43,720 --> 04:46:47,280 YOU'RE RIGHT. 6727 04:46:47,280 --> 04:46:50,960 >> ALISON. 6728 04:46:50,960 --> 04:46:54,120 >> FIRST I WANT TO THANK YOU, 6729 04:46:54,120 --> 04:46:56,800 CATHY FOR A BEAUTIFUL AND 6730 04:46:56,800 --> 04:46:59,040 PASSIONATE TALK AND IT'S NICE TO 6731 04:46:59,040 --> 04:47:00,600 SEE YOU. 6732 04:47:00,600 --> 04:47:02,360 I ACTUALLY WAS GOING RAISE 6733 04:47:02,360 --> 04:47:04,040 SOMETHING VERY SIMILAR IN THAT 6734 04:47:04,040 --> 04:47:07,600 IN ADDITION TO HIGHLIGHTING LIKE 6735 04:47:07,600 --> 04:47:09,440 WHICH INTERVENTION AT WHICH 6736 04:47:09,440 --> 04:47:11,200 POINT IN TIME FOR WHICH PERSON 6737 04:47:11,200 --> 04:47:14,360 TRYING TO FIGURE OUT WHO CAN DO 6738 04:47:14,360 --> 04:47:15,840 THE PIECES OF THESE 6739 04:47:15,840 --> 04:47:18,520 EVIDENCE-BASED INTERVENTIONS IS 6740 04:47:18,520 --> 04:47:18,800 CRITICAL. 6741 04:47:18,800 --> 04:47:19,760 AND I JUST APPRECIATE YOU 6742 04:47:19,760 --> 04:47:20,400 HIGHLIGHTING THAT WE'RE NOT 6743 04:47:20,400 --> 04:47:22,400 GOING TO BE ABLE TO RELY ON 6744 04:47:22,400 --> 04:47:24,240 DEVELOPMENT PEDIATRICIANS AND 6745 04:47:24,240 --> 04:47:26,320 PSYCHOLOGISTS AND WE NEED TO 6746 04:47:26,320 --> 04:47:30,720 START LOOKING AT EXISTING 6747 04:47:30,720 --> 04:47:31,800 SERVICES SYSTEMS TO FIGURE OUT 6748 04:47:31,800 --> 04:47:34,160 HOW CAN WE JUST DO A BETTER JOB 6749 04:47:34,160 --> 04:47:38,320 OF MORE QUICKLY DISSEMINATING 6750 04:47:38,320 --> 04:47:39,600 EVIDENCE-BASED INTERVENTIONS 6751 04:47:39,600 --> 04:47:41,840 BECAUSE AS HELEN WAS SAYING, WE 6752 04:47:41,840 --> 04:47:44,800 HAVE QUITE A FEW OF THEM THAT 6753 04:47:44,800 --> 04:47:48,840 HAVE A FAIR EVIDENCE BASE BUT 6754 04:47:48,840 --> 04:47:50,760 WE'RE STILL NOT SO GREAT AT 6755 04:47:50,760 --> 04:47:52,240 GETTING THEM INTO COMMUNITIES 6756 04:47:52,240 --> 04:47:53,240 AND GETTING THEM ACCESS. 6757 04:47:53,240 --> 04:47:56,040 WE DON'T HAVE TO GO TO LOW AND 6758 04:47:56,040 --> 04:47:57,640 MIDDLE RESOURCES COUNTRIES. 6759 04:47:57,640 --> 04:47:58,800 LIKE HERE IN THE UNITED STATES 6760 04:47:58,800 --> 04:48:01,800 AND MOST PART OF THE COUNTRY, 6761 04:48:01,800 --> 04:48:03,520 PEOPLE CAN'T ACCESS APPROPRIATE 6762 04:48:03,520 --> 04:48:04,640 EVIDENCE-BASED SERVICES. 6763 04:48:04,640 --> 04:48:07,200 SO I ALSO JUST THANK YOU, THANK 6764 04:48:07,200 --> 04:48:08,440 YOU, FOR EVERYTHING YOU'RE DOING 6765 04:48:08,440 --> 04:48:11,280 AND THAT'S MY TWO CENTS WAS ALSO 6766 04:48:11,280 --> 04:48:16,680 ON IMPROVING THE SERVICE SECTOR. 6767 04:48:16,680 --> 04:48:20,360 >> AGAIN, I COMPLETELY AGREE. 6768 04:48:20,360 --> 04:48:22,520 WE TALKED A LITTLE BIT ABOUT 6769 04:48:22,520 --> 04:48:23,640 TASK SHARING AIMED AT THE IDEA 6770 04:48:23,640 --> 04:48:25,960 OF WHO CAN DO THIS. 6771 04:48:25,960 --> 04:48:27,120 THERE'S BEEN FOCUS RECENT YEARS 6772 04:48:27,120 --> 04:48:28,800 ON EARLY IDENTIFICATION AND WHO 6773 04:48:28,800 --> 04:48:30,600 CAN IDENTIFY KIDS EARLY BUT MUCH 6774 04:48:30,600 --> 04:48:32,400 LESS FOCUSSED IN TERMS OF 6775 04:48:32,400 --> 04:48:35,200 RESEARCH ON WHO CAN ACTUALLY 6776 04:48:35,200 --> 04:48:36,200 PROVIDE INVENTION AND SUPPORT 6777 04:48:36,200 --> 04:48:39,640 AND WE NEED TO DO THAT. 6778 04:48:39,640 --> 04:48:41,560 WE ABSOLUTELY NEED TO DO IT. 6779 04:48:41,560 --> 04:48:44,640 EVEN THEN WE NEED TO KNOW WHAT 6780 04:48:44,640 --> 04:48:47,040 DO THEY NEED AND WHO IS GOING TO 6781 04:48:47,040 --> 04:48:48,040 BENEFIT FROM THIS AND WHO ISN'T 6782 04:48:48,040 --> 04:48:50,400 AND WHO NEEDS MORE AND WHO 6783 04:48:50,400 --> 04:48:55,760 DOESN'T EVEN NEED IT. 6784 04:48:55,760 --> 04:48:57,800 >> ALYCIA. 6785 04:48:57,800 --> 04:49:04,760 >> HI, DR. LORD. 6786 04:49:04,760 --> 04:49:06,400 SO FROM THE PERSONALIZED CARE 6787 04:49:06,400 --> 04:49:08,800 AND STEP APPROACH MODEL THERE'S 6788 04:49:08,800 --> 04:49:10,480 SO MANY DIFFERENT GREAT THINGS 6789 04:49:10,480 --> 04:49:13,440 THAT NOT JUST THIS COMMITTEE BUT 6790 04:49:13,440 --> 04:49:18,480 INDIVIDUAL RESEARCHERS NEED TO 6791 04:49:18,480 --> 04:49:18,840 DO. 6792 04:49:18,840 --> 04:49:20,840 WOULD YOU BE ABLE TO IDENTIFY 6793 04:49:20,840 --> 04:49:24,000 THREE TO FIVE OF THEM WE SHOULD 6794 04:49:24,000 --> 04:49:26,120 BE PUTTING INTO THE STRATEGIC 6795 04:49:26,120 --> 04:49:28,320 PLAN TO MAKE SURE IT GETS 6796 04:49:28,320 --> 04:49:29,000 PRIORITY RESEARCH IF THAT MAKES 6797 04:49:29,000 --> 04:49:32,240 SENSE AND WE KIND OF LIKE START 6798 04:49:32,240 --> 04:49:35,640 OUT STRONG IN A PARTICULAR WAY 6799 04:49:35,640 --> 04:49:37,880 IN OUR STRATEGIC PLAN? 6800 04:49:37,880 --> 04:49:39,880 >> I THINK PART OF THE PROBLEM 6801 04:49:39,880 --> 04:49:41,760 IS WE NEED MULTI-SITE STUDIES 6802 04:49:41,760 --> 04:49:44,040 WITH RELATIVELY LARGE SAMPLES. 6803 04:49:44,040 --> 04:49:48,200 I THINK WE COULD BE FOCUSSED 6804 04:49:48,200 --> 04:49:49,200 ABOUT WHAT INTERVENTIONS ARE 6805 04:49:49,200 --> 04:49:54,160 PROVIDED BUT I THINK WE DO NEED 6806 04:49:54,160 --> 04:49:55,240 SUFFICIENT DOCUMENTATION OF THE 6807 04:49:55,240 --> 04:49:58,160 KIDS AND ADULTS IN THE 6808 04:49:58,160 --> 04:49:59,840 INTERVENTIONS OR YOU CAN'T SAY 6809 04:49:59,840 --> 04:50:01,560 WHO THEY'RE GOING TO WORK FOR. 6810 04:50:01,560 --> 04:50:04,400 THAT'S ONE OF THE PROBLEMS FOR 6811 04:50:04,400 --> 04:50:07,000 DOING FOR EXAMPLE, TOTAL 6812 04:50:07,000 --> 04:50:08,400 EFFECTIVENESS OR RESEARCH 6813 04:50:08,400 --> 04:50:09,360 WITHOUT CONSIDERING WHO'S THERE. 6814 04:50:09,360 --> 04:50:11,600 BUT I THINK WE COULD BE FOCUSSED 6815 04:50:11,600 --> 04:50:12,200 ABOUT THAT. 6816 04:50:12,200 --> 04:50:14,360 I THINK THERE HAVE BEEN SOME 6817 04:50:14,360 --> 04:50:19,440 STUDIES THAT HAVE COMPARED 6818 04:50:19,440 --> 04:50:23,200 TREATMENTS BUT I'M ACROSS THE 6819 04:50:23,200 --> 04:50:25,160 HALL FROM SOMEONE DOING RESEARCH 6820 04:50:25,160 --> 04:50:32,480 AND THERE'S HARD TO DO AND 6821 04:50:32,480 --> 04:50:33,000 COMPL 6822 04:50:33,000 --> 04:50:33,800 COMPLICATED TO REPORT AND WE 6823 04:50:33,800 --> 04:50:40,920 NEED TO SUPPORT THE INFORMATION 6824 04:50:40,920 --> 04:50:42,480 THAT GETS OUT AND DECIDE WHAT 6825 04:50:42,480 --> 04:50:44,800 ARE POSSIBLE FACTORS. 6826 04:50:44,800 --> 04:50:46,800 AS PEOPLE IN THE COMMITTEE HAVE 6827 04:50:46,800 --> 04:50:47,720 REPEATEDLY SAID, THERE'S 6828 04:50:47,720 --> 04:50:49,040 HUNDREDS OF THINGS TO MAKE A 6829 04:50:49,040 --> 04:50:50,800 DIFFERENCE BUT I THINK WE COULD 6830 04:50:50,800 --> 04:50:52,640 NARROW IT DOWN TO FOUR OR FIVE 6831 04:50:52,640 --> 04:50:53,640 THINGS AT DIFFERENT AGE LEVELS 6832 04:50:53,640 --> 04:50:55,760 THAT ARE LIKELY TO MAKE A 6833 04:50:55,760 --> 04:50:56,880 DIFFERENCE IN SOMEBODY'S NEED 6834 04:50:56,880 --> 04:50:59,440 FOR A CERTAIN KIND OF TREATMENT 6835 04:50:59,440 --> 04:51:00,480 AND RESPONSE TO THAT TREATMENT 6836 04:51:00,480 --> 04:51:03,600 AND THEN WE WOULD NEED TO EXPECT 6837 04:51:03,600 --> 04:51:05,560 THOUGH THAT A SAMPLE THAT 6838 04:51:05,560 --> 04:51:09,400 SOMEHOW PEOPLE GET BIG ENOUGH 6839 04:51:09,400 --> 04:51:10,120 SAMPLES THAT ARE DIVERSE ENOUGH 6840 04:51:10,120 --> 04:51:12,800 TO STUDY THAT. 6841 04:51:12,800 --> 04:51:16,440 PART IS OUR WHOLE SYSTEM IS 6842 04:51:16,440 --> 04:51:17,760 PREDOMINANTLY INVESTIGATOR BASED 6843 04:51:17,760 --> 04:51:20,040 STUDIES OF PEOPLE WHO DEVELOP A 6844 04:51:20,040 --> 04:51:20,320 TREATMENT. 6845 04:51:20,320 --> 04:51:24,880 IT SEEMS PRETTY GOOD AND THEN 6846 04:51:24,880 --> 04:51:27,320 THEY REPEATEDLY SHOW IT WORKS 6847 04:51:27,320 --> 04:51:29,120 COMPARED TO WHATEVER MOST 6848 04:51:29,120 --> 04:51:30,120 LIMITED COMPARISON GROUP THEY 6849 04:51:30,120 --> 04:51:31,800 CAN FIND IN WHATEVER GROUP IS 6850 04:51:31,800 --> 04:51:35,640 MOST LIKELY TO RESPOND TO IT. 6851 04:51:35,640 --> 04:51:38,080 AND WE NEED TO STEP BACK AND DO 6852 04:51:38,080 --> 04:51:39,480 SOMETHING IN A DIFFERENT WAY. 6853 04:51:39,480 --> 04:51:41,920 I THINK THAT'S ONE 6854 04:51:41,920 --> 04:51:42,280 RECOMMENDATION. 6855 04:51:42,280 --> 04:51:44,840 I THINK THAT TAKES -- AND I AM 6856 04:51:44,840 --> 04:51:47,560 NOT -- LUCKILY FOR YOU ALL I'M 6857 04:51:47,560 --> 04:51:49,640 NOT LEADING NIH OR ANY AGENCY 6858 04:51:49,640 --> 04:51:55,760 BUT I THINK WE NEED HELP FROM 6859 04:51:55,760 --> 04:51:58,760 DR. GORDON AND DR. DANIELS ABOUT 6860 04:51:58,760 --> 04:52:00,440 HOW DO WITH MAKE THIS HAPPEN. 6861 04:52:00,440 --> 04:52:02,040 I THINK WE COULD DO IT AND I 6862 04:52:02,040 --> 04:52:03,280 DON'T THINK IT WOULD COST 6863 04:52:03,280 --> 04:52:06,000 COMPARED TO THE AMOUNTS OF MONEY 6864 04:52:06,000 --> 04:52:08,000 THAT HAVE GONE INTO FOR EXAMPLE 6865 04:52:08,000 --> 04:52:10,120 GENETICS WHICH I'M GLAD IT'S 6866 04:52:10,120 --> 04:52:13,840 GONE, BUT I THINK WE COULD FIND 6867 04:52:13,840 --> 04:52:14,640 OUT THINGS THAT WOULD ANSWER 6868 04:52:14,640 --> 04:52:22,880 SIMPLE QUESTIONS. 6869 04:52:22,880 --> 04:52:25,200 >> ALYCIA DID YOU WANT TO SAY 6870 04:52:25,200 --> 04:52:26,320 SOMETHING ELSE? 6871 04:52:26,320 --> 04:52:27,600 >> I WANT OTHERS TO HAVE A 6872 04:52:27,600 --> 04:52:28,600 CHANCE TO SPEAK. 6873 04:52:28,600 --> 04:52:31,680 >> OTHER COMMENTS OR QUESTIONS 6874 04:52:31,680 --> 04:52:32,560 FROM MEMBERS OF THE COMMITTEE? 6875 04:52:32,560 --> 04:52:35,160 THIS HAS BEEN A REALLY 6876 04:52:35,160 --> 04:52:35,680 ILLUMINATING DISCUSSION. 6877 04:52:35,680 --> 04:52:38,520 OKAY. 6878 04:52:38,520 --> 04:52:41,080 WELL, THANK YOU VERY MUCH, 6879 04:52:41,080 --> 04:52:43,000 CATHY, REALLY, FOR JOINING US 6880 04:52:43,000 --> 04:52:49,120 TODAY AND PRESENTING THE LANCET 6881 04:52:49,120 --> 04:52:51,600 ALL RIGHT AND SUSAN, AM I 6882 04:52:51,600 --> 04:52:53,200 CORRECT IT'S AVAILABLE ON THE 6883 04:52:53,200 --> 04:52:53,560 IACC WEBSITE? 6884 04:52:53,560 --> 04:52:55,320 >> WE HAVE A LINK ON THE 6885 04:52:55,320 --> 04:52:55,800 WEBSITE. 6886 04:52:55,800 --> 04:53:02,320 >> GREAT. 6887 04:53:02,320 --> 04:53:04,920 AND LARRY HAS A THUMBS UP 6888 04:53:04,920 --> 04:53:06,400 BECAUSE HE KNOWS IT'S AVAILABLE 6889 04:53:06,400 --> 04:53:09,400 OR TELL YOU WHAT A GREAT JOB HE 6890 04:53:09,400 --> 04:53:11,680 DID AND SURE WE ALL SHARE THE 6891 04:53:11,680 --> 04:53:13,840 SENTIMENT AND WANT TO ENCOURAGE 6892 04:53:13,840 --> 04:53:16,280 MEMBERS TO READ THE REPORT AND 6893 04:53:16,280 --> 04:53:20,400 THERE'S SPECIFICITY WE CAN TAKE 6894 04:53:20,400 --> 04:53:23,720 WITH US INTO THE STRATEGIC PLAN? 6895 04:53:23,720 --> 04:53:25,040 I PARTICULARLY LIKE THE 6896 04:53:25,040 --> 04:53:30,160 FORMATION YOU MENTIONED IN 6897 04:53:30,160 --> 04:54:10,000 PARTICULAR AROUND ENSURE IING AND 6898 04:54:10,000 --> 04:54:15,000 THERE'S MECHANISMS IN PLACE TO 6899 04:54:15,000 --> 04:54:17,680 FACILITATE AND WE HAVE TO LOOK 6900 04:54:17,680 --> 04:54:18,560 HARD AT THAT. 6901 04:54:18,560 --> 04:54:20,400 PAUL, YOU WANTED TO MAKE A 6902 04:54:20,400 --> 04:54:22,080 COMMENT? 6903 04:54:22,080 --> 04:54:24,800 >> I'M SORRY, BRIEFLY. 6904 04:54:24,800 --> 04:54:27,200 GOING TO THE ISSUE JENNIFER 6905 04:54:27,200 --> 04:54:31,440 JOHNSON RAISED EARLIER AND 6906 04:54:31,440 --> 04:54:33,440 CATHERINE RESPONDED IT DOESN'T 6907 04:54:33,440 --> 04:54:35,280 ADDRESS THE INTERSECTIONALITY 6908 04:54:35,280 --> 04:54:37,840 BUT FOR THOSE WHO MAY WANT TO 6909 04:54:37,840 --> 04:54:41,800 USE THE REPORT AS A SPRING BOARD 6910 04:54:41,800 --> 04:54:44,960 AS THE MENTION OF IT IN THE KEY 6911 04:54:44,960 --> 04:54:47,000 MESSAGES BLOCK ON PAGE ONE IT 6912 04:54:47,000 --> 04:54:50,000 TALKS ABOUT THE NEED FOR HEALTH 6913 04:54:50,000 --> 04:54:53,000 CARE, COORDINATION AND SOCIAL 6914 04:54:53,000 --> 04:54:54,400 SECTORS ACROSS THE LIFE SPAN. 6915 04:54:54,400 --> 04:54:58,960 THERE'S SOMETHING THERE YOU CAN 6916 04:54:58,960 --> 04:55:01,200 SPRING OFF OF, I THINK. 6917 04:55:01,200 --> 04:55:03,000 >> THANKS, PAUL. 6918 04:55:03,000 --> 04:55:04,920 AGAIN, WE THANK YOU FOR YOUR 6919 04:55:04,920 --> 04:55:05,240 CONTRIBUTION. 6920 04:55:05,240 --> 04:55:06,480 WE'RE RUNNING A FEW MINUTES 6921 04:55:06,480 --> 04:55:07,200 AHEAD. 6922 04:55:07,200 --> 04:55:08,400 SUSAN, I SUGGEST SINCE WE HAD 6923 04:55:08,400 --> 04:55:09,800 SOME ABBREVIATE THE BREAK WE 6924 04:55:09,800 --> 04:55:12,200 TAKE ANOTHER BREAK AND COME BACK 6925 04:55:12,200 --> 04:55:15,400 AT 4:00 AS SCHEDULED TO DO THE 6926 04:55:15,400 --> 04:55:16,800 REST OF OUR COMMITTEE BUSINESS 6927 04:55:16,800 --> 04:55:17,800 FOR THE DAY. 6928 04:55:17,800 --> 04:55:19,000 DOES THAT SOUND GOOD TO YOU. 6929 04:55:19,000 --> 04:55:20,120 >> THAT SOUNDS GOOD. 6930 04:55:20,120 --> 04:55:21,960 WE'LL TAKE ANOTHER BREAK. 6931 04:55:21,960 --> 04:55:23,720 IT IS NOW 3:50. 6932 04:55:23,720 --> 04:55:27,960 WE'LL RESUME AT 4:00 AND TRY TO 6933 04:55:27,960 --> 04:55:28,640 COMPLETE THE REST OF THE 6934 04:55:28,640 --> 04:55:31,200 BUSINESS FOR THE DAY. 6935 04:55:31,200 --> 04:55:32,360 THANK YOU VERY MUCH EVERYONE. 6936 04:55:32,360 --> 04:55:36,880 THANK YOU AGAIN, DR. LORD 6937 04:55:36,880 --> 04:55:38,640 >> WE'RE NOW GOING TO GO TO 6938 04:55:38,640 --> 04:55:40,320 THE FINAL SEGMENT OF TODAY'S 6939 04:55:40,320 --> 04:55:44,360 MEETING WHICH IS A RETURN TO THE 6940 04:55:44,360 --> 04:55:46,520 IACC BUSINESS AND TURN IT BACK 6941 04:55:46,520 --> 04:55:47,200 TO SUSAN. 6942 04:55:47,200 --> 04:55:48,640 I THINK THERE'S TWO MORE ASPECTS 6943 04:55:48,640 --> 04:55:54,840 WE NEED TO DISCUSS TODAY. 6944 04:55:54,840 --> 04:55:58,000 WE'LL BE TALKING ABOUT THE 6945 04:55:58,000 --> 04:55:59,560 SUMMARY OF ADVANCES. 6946 04:55:59,560 --> 04:56:00,480 WE TALKED ABOUT THIS LAST 6947 04:56:00,480 --> 04:56:02,360 MEETING AND DIDN'T COMPLETE THE 6948 04:56:02,360 --> 04:56:04,400 DISCUSSION SO WE WERE GOING TO 6949 04:56:04,400 --> 04:56:05,840 COME BACK TO IT TODAY. 6950 04:56:05,840 --> 04:56:10,520 AS A REMINDER FOR 2020 WE 6951 04:56:10,520 --> 04:56:11,160 STARTED A LITTLE BIT LATE ON 6952 04:56:11,160 --> 04:56:12,880 PUTTING TOGETHER THE SUMMARY OF 6953 04:56:12,880 --> 04:56:15,320 ADVANCES BECAUSE THE COMMITTEE 6954 04:56:15,320 --> 04:56:17,040 ONLY STARTED WORK AGAIN IN JULY. 6955 04:56:17,040 --> 04:56:19,480 WE'RE TRYING TO CATCH UP ON 6956 04:56:19,480 --> 04:56:20,920 THAT. 6957 04:56:20,920 --> 04:56:22,160 SUBMITTED A NUMBER OF 6958 04:56:22,160 --> 04:56:23,760 NOMINATIONS AND TODAY WE WANT TO 6959 04:56:23,760 --> 04:56:25,160 DO THE FINAL PASS AT REFINING 6960 04:56:25,160 --> 04:56:27,200 THAT LIST AND AFTER WE'VE MADE 6961 04:56:27,200 --> 04:56:30,880 DECISIONS ON A FEW ITEMS THAT 6962 04:56:30,880 --> 04:56:32,840 WERE QUESTION MARKS WE WILL GO 6963 04:56:32,840 --> 04:56:34,640 AHEAD AND SEND THE COMMITTEE 6964 04:56:34,640 --> 04:56:36,840 BALLOTS AND YOU'LL BE ABLE TO 6965 04:56:36,840 --> 04:56:39,000 VOTE ON THE TOP 20. 6966 04:56:39,000 --> 04:56:41,960 AND EVERYTHING ON THE LIST WILL 6967 04:56:41,960 --> 04:56:44,000 BE LISTED ON THE BACK OF THE 6968 04:56:44,000 --> 04:56:45,720 DOCUMENT BUT ONLY THE TOP 20 6969 04:56:45,720 --> 04:56:47,800 WILL HAVE WRITTEN UP SUMMARIES 6970 04:56:47,800 --> 04:56:49,120 OF THEM IN THIS DOCUMENT. 6971 04:56:49,120 --> 04:56:51,240 SO TODAY WE'RE GOING TO TALK 6972 04:56:51,240 --> 04:56:55,920 ABOUT THOSE NOMINATIONS. 6973 04:56:55,920 --> 04:56:57,760 AND THAT'S WHAT WE ARE PLANNING 6974 04:56:57,760 --> 04:56:58,200 TO DO. 6975 04:56:58,200 --> 04:57:03,760 WE'LL MOVE INTO THAT NOW. 6976 04:57:03,760 --> 04:57:04,760 I WILL LET JOSH LEAD THE 6977 04:57:04,760 --> 04:57:07,200 DISCUSSION OF SOME OF THE 6978 04:57:07,200 --> 04:57:13,920 REMAINING ARTICLES WE NEED TO 6979 04:57:13,920 --> 04:57:14,240 DISCUSS. 6980 04:57:14,240 --> 04:57:15,560 >> JUST TO REMIND AND MAKE SURE 6981 04:57:15,560 --> 04:57:17,240 WE'RE ALL AWARE OF THE 6982 04:57:17,240 --> 04:57:18,960 PROCEDURES, LIKE SUSAN SAID, 6983 04:57:18,960 --> 04:57:23,040 WE'RE AIMING TO CHOOSE 20 OF 6984 04:57:23,040 --> 04:57:24,320 THEM TO SELECT. 6985 04:57:24,320 --> 04:57:27,200 AND THE IACC STAFF WENT THROUGH 6986 04:57:27,200 --> 04:57:29,320 THE NOMINATIONS AND THERE ARE 6987 04:57:29,320 --> 04:57:32,000 SOME THEY WANTED TO BRING UP FOR 6988 04:57:32,000 --> 04:57:35,040 DISCUSSION BUT I ALSO WANT TO 6989 04:57:35,040 --> 04:57:36,640 ENABLE THOUGH WE HAVE LIMITED 6990 04:57:36,640 --> 04:57:40,640 TIME, THOSE OF YOU WHO HAVE 6991 04:57:40,640 --> 04:57:42,720 INTEREST IN DISCUSSING ANY OF 6992 04:57:42,720 --> 04:57:44,760 THE NOMINATIONS YOU PUT FORWARD 6993 04:57:44,760 --> 04:57:46,760 TO TRY TO BRING FORTH OR ANY 6994 04:57:46,760 --> 04:57:47,600 NOMINATIONS YOU HAVE CONCERNS 6995 04:57:47,600 --> 04:57:48,760 ABOUT TO PLEASE GO AHEAD AND DO 6996 04:57:48,760 --> 04:57:51,120 SO. 6997 04:57:51,120 --> 04:57:52,720 SO JUST YOU CAN EVEN START 6998 04:57:52,720 --> 04:57:55,640 RAISING YOUR HANDS NOW BUT WE'LL 6999 04:57:55,640 --> 04:57:56,800 GO THROUGH THE NOMINATIONS 7000 04:57:56,800 --> 04:57:59,240 QUESTION BY QUESTION AND THE 7001 04:57:59,240 --> 04:58:01,600 FIRST QUESTION IS ON QUESTION 7002 04:58:01,600 --> 04:58:02,760 ONE SCREENING AND DIAGNOSIS. 7003 04:58:02,760 --> 04:58:05,440 THESE QUESTIONS ARE TAKEN FROM 7004 04:58:05,440 --> 04:58:07,880 THE OLD STRATEGIC PLAN WE'LL 7005 04:58:07,880 --> 04:58:09,600 REVISE THE PROCESS NEXT YEAR 7006 04:58:09,600 --> 04:58:15,240 WHEN WE HAVE THE NEW VERSION AND 7007 04:58:15,240 --> 04:58:18,160 THERE'S SOMETHING LIKE 12 OR SO 7008 04:58:18,160 --> 04:58:21,120 DIAGNOSES AND TWO OF THEM WERE 7009 04:58:21,120 --> 04:58:23,200 IDENTIFIED BY OUR STAFF AS SOME 7010 04:58:23,200 --> 04:58:27,640 CONCERN BECAUSE THEY MAY NOT BE 7011 04:58:27,640 --> 04:58:29,000 ASD SPECIFIC ENOUGH. 7012 04:58:29,000 --> 04:58:31,200 ONE TREND IN PEDIATRIC 7013 04:58:31,200 --> 04:58:33,880 DEVELOPMENT SCREENING AND VALVE 7014 04:58:33,880 --> 04:58:38,600 OF THE COGNITIVE BATTERY AND 7015 04:58:38,600 --> 04:58:39,200 INTELLECTUAL DISABILITY. 7016 04:58:39,200 --> 04:58:42,880 THESE ARE CONCERNS BROUGHT UP BY 7017 04:58:42,880 --> 04:58:45,600 THE OARC STAFF FOR YOUR 7018 04:58:45,600 --> 04:58:46,600 CONSIDERATION AS YOU CONSIDER 7019 04:58:46,600 --> 04:58:47,720 HOW TO VOTE. 7020 04:58:47,720 --> 04:58:50,280 I WANTED TO OPEN IT UP TO ANY 7021 04:58:50,280 --> 04:58:52,000 QUESTIONS OR COMMENTS OR 7022 04:58:52,000 --> 04:58:54,840 PROMOTIONS FOR ANY OF THE OTHER 7023 04:58:54,840 --> 04:58:57,960 NOMINATIONS OR THESE TWO FOR 7024 04:58:57,960 --> 04:58:58,560 QUESTION ONE SCREENING AND 7025 04:58:58,560 --> 04:59:00,080 DIAGNOSIS AND SEE IF THERE'S ANY 7026 04:59:00,080 --> 04:59:02,080 COMMENTS FROM ANY MEMBERS OF THE 7027 04:59:02,080 --> 04:59:04,360 IACC ON ANY OF THOSE 7028 04:59:04,360 --> 04:59:04,760 NOMINATIONS? 7029 04:59:04,760 --> 04:59:06,600 >> I WILL MENTION AT THE TOP 7030 04:59:06,600 --> 04:59:08,880 THERE, THAT WASN'T THE BEST 7031 04:59:08,880 --> 04:59:09,320 WORDING. 7032 04:59:09,320 --> 04:59:10,000 THESE ARTICLES ARE NOT 7033 04:59:10,000 --> 04:59:10,560 QUESTIONABLE. 7034 04:59:10,560 --> 04:59:12,720 THESE ARE QUESTIONS WE HAD ABOUT 7035 04:59:12,720 --> 04:59:13,280 THE ARTICLES. 7036 04:59:13,280 --> 04:59:13,880 >> THANK YOU. 7037 04:59:13,880 --> 04:59:15,560 SORRY ABOUT THAT. 7038 04:59:15,560 --> 04:59:19,360 >> SO THAT WAS INADVERTENT AND 7039 04:59:19,360 --> 04:59:21,280 WE DO HAVE POLLS TO GET AT WHAT 7040 04:59:21,280 --> 04:59:22,400 PEOPLE FEEL ABOUT THESE ARTICLES 7041 04:59:22,400 --> 04:59:27,240 BUT YOU CAN FEEL FREE TO TALK 7042 04:59:27,240 --> 04:59:35,760 TOO. 7043 04:59:35,760 --> 04:59:37,600 >> LET'S NOT DO THE POLLS 7044 04:59:37,600 --> 04:59:40,480 BECAUSE THE POLLS ARE TOO BINARY 7045 04:59:40,480 --> 04:59:41,960 I'D RATHER HAVE PEOPLE DISCUSS 7046 04:59:41,960 --> 04:59:47,400 IF THEY HAVE ANY PARTICULAR 7047 04:59:47,400 --> 04:59:50,720 ARTICLES THEY'D LIKE TO BRING 7048 04:59:50,720 --> 04:59:51,440 UP. 7049 04:59:51,440 --> 04:59:52,560 I'M NOT HEARING ANY. 7050 04:59:52,560 --> 04:59:54,760 I DON'T WANT TO DOMINATE THE 7051 04:59:54,760 --> 04:59:55,960 DISCUSSION SO PLEASE IF ANYBODY 7052 04:59:55,960 --> 04:59:57,560 ELSE HAS THINGS THEY WANT TO 7053 04:59:57,560 --> 04:59:57,840 DISCUSS. 7054 04:59:57,840 --> 05:00:03,960 ONE OF THE NOMINATIONS IS INDEED 7055 05:00:03,960 --> 05:00:06,200 WAS THE ONE DONE BY THE 7056 05:00:06,200 --> 05:00:17,960 DEPARTMENT OF EDUCATION AND 7057 05:00:17,960 --> 05:00:30,800 ARTICLE AND THIS IS A 7058 05:00:30,800 --> 05:00:35,280 COMMUNICATION AND SURVEILLANCE 7059 05:00:35,280 --> 05:00:37,560 TOOL. 7060 05:00:37,560 --> 05:00:39,280 I'VE THOUGH GOT THE DOCUMENT 7061 05:00:39,280 --> 05:00:46,360 WITH ALL THE NOMINATIONS THE 7062 05:00:46,360 --> 05:00:47,040 ADOBE DOCUMENT. 7063 05:00:47,040 --> 05:00:48,760 THIS IS ATTRACTIVE NOT BECAUSE 7064 05:00:48,760 --> 05:00:53,560 IT'S A DEFINITIVE NEW WAY OF 7065 05:00:53,560 --> 05:00:55,360 SCREENING BUT BECAUSE IT WAS A 7066 05:00:55,360 --> 05:00:57,360 POTENTIALLY NEW TOOL PILOTED IN 7067 05:00:57,360 --> 05:00:59,960 A LARGE GROUP OF CHILDREN AND UP 7068 05:00:59,960 --> 05:01:01,560 PARTICULAR SUGGESTS THIS TOOL 7069 05:01:01,560 --> 05:01:03,720 MAY HAVE A HIGHER POSITIVE 7070 05:01:03,720 --> 05:01:09,360 PREDICTIVE VALUE THAN THE 7071 05:01:09,360 --> 05:01:11,240 CURRENT STATE OF THE ART TOOL 7072 05:01:11,240 --> 05:01:13,920 FOR ADDRESSING THIS. 7073 05:01:13,920 --> 05:01:15,280 IT'S STILL A LITTLE BIT EARLY TO 7074 05:01:15,280 --> 05:01:17,880 SAY WE OUGHT TO BE USING BUT AN 7075 05:01:17,880 --> 05:01:18,560 INTERESTING ARTICLE TO BRING TO 7076 05:01:18,560 --> 05:01:26,560 YOUR ATTENTION. 7077 05:01:26,560 --> 05:01:31,600 AND THIS WAS NOMINATED BY OUR 7078 05:01:31,600 --> 05:01:35,160 OARC STAFF AND VALIDATION A 7079 05:01:35,160 --> 05:01:37,240 DEVELOPMENT TOOL FOR LOW 7080 05:01:37,240 --> 05:01:38,760 LITERACY AUTISM SCREENING AND 7081 05:01:38,760 --> 05:01:39,840 THOUGH THIS WAS EARLY IN THE 7082 05:01:39,840 --> 05:01:41,960 PROCESS OF DEFINING THE TOOL AND 7083 05:01:41,960 --> 05:01:43,240 THE STUDY WASN'T QUITE AS LARGE, 7084 05:01:43,240 --> 05:01:44,400 WHAT I LIKED ABOUT THIS IS IT 7085 05:01:44,400 --> 05:01:47,960 WAS CONDUCTED IN REAL WORLD 7086 05:01:47,960 --> 05:01:50,760 SETTINGS AND IN CHILDREN FROM 7087 05:01:50,760 --> 05:01:52,480 LOW-INCOME AND ETHNIC RACIAL 7088 05:01:52,480 --> 05:01:53,200 COMMUNITIES WHERE ENGLISH WAS 7089 05:01:53,200 --> 05:01:55,280 NOT THE PRIMARY LANGUAGE WHICH 7090 05:01:55,280 --> 05:01:58,000 FITS WITH THE GROWING INTEREST 7091 05:01:58,000 --> 05:01:59,280 IN STUDIES RELEVANT TO DISPARITY 7092 05:01:59,280 --> 05:02:01,960 POPULATIONS. 7093 05:02:01,960 --> 05:02:04,560 THOSE ARE TWO I HAPPEN TO FIND 7094 05:02:04,560 --> 05:02:04,880 INTERESTING. 7095 05:02:04,880 --> 05:02:05,960 AND ANY OTHERS PEOPLE WOULD LIKE 7096 05:02:05,960 --> 05:02:10,960 TO MENTION, PLEASE FEEL FREE TO 7097 05:02:10,960 --> 05:02:13,360 DO SO. 7098 05:02:13,360 --> 05:02:15,160 ALYCIA DID YOU HAVE A COMMENT OR 7099 05:02:15,160 --> 05:02:15,440 QUESTION? 7100 05:02:15,440 --> 05:02:17,520 >> THE HARRIS ARTICLE IS LISTED 7101 05:02:17,520 --> 05:02:20,440 IN 2020 BECAUSE THAT'S WHEN I 7102 05:02:20,440 --> 05:02:29,280 WAS ONLINE AND WAS PUBLISHED. 7103 05:02:29,280 --> 05:02:32,760 >> WHETHER IT CAME OUT IN PRINT 7104 05:02:32,760 --> 05:02:40,960 OR IN EPUB FORM. 7105 05:02:40,960 --> 05:02:43,880 >> ANOTHER QUESTION. 7106 05:02:43,880 --> 05:02:45,120 IN LIGHT OF THE COMMENTS COULD 7107 05:02:45,120 --> 05:02:48,840 YOU PLEASE REMIND US OR TELL US 7108 05:02:48,840 --> 05:02:50,560 AGAIN YOUR VISION OF WHAT MERITS 7109 05:02:50,560 --> 05:02:53,600 ARE BEING DESIGNATED IN ADVANCE. 7110 05:02:53,600 --> 05:02:57,040 HOW SIGNIFICANT, HOW DEFINITIVE, 7111 05:02:57,040 --> 05:02:59,240 THINGS LIKE THAT? 7112 05:02:59,240 --> 05:03:01,000 IDEALLY WE'D BE TALKING ABOUT 7113 05:03:01,000 --> 05:03:02,480 THINGS WE'D WANT THE PUBLIC TO 7114 05:03:02,480 --> 05:03:04,160 KNOW ABOUT BECAUSE THEY'RE 7115 05:03:04,160 --> 05:03:05,840 EITHER VERY PROMISING OR 7116 05:03:05,840 --> 05:03:07,760 DEFINITIVE ENOUGH THAT WE WANT 7117 05:03:07,760 --> 05:03:09,400 THE PUBLIC TO BE FOLLOWING UP ON 7118 05:03:09,400 --> 05:03:12,400 THIS AND WHEN WE SAY THE PUBLIC 7119 05:03:12,400 --> 05:03:14,040 WE MEAN CONGRESS DOING THE 7120 05:03:14,040 --> 05:03:18,640 REPORT BEING MADE. 7121 05:03:18,640 --> 05:03:20,640 THAT HAS TO BE TEMPERED BY 7122 05:03:20,640 --> 05:03:23,240 HIGHLIGHTING ADVANCES IN EACH OF 7123 05:03:23,240 --> 05:03:25,000 THE SEVEN AREAS. 7124 05:03:25,000 --> 05:03:27,000 SOME HAVE ADVANCES READY FOR 7125 05:03:27,000 --> 05:03:28,160 PRIME TIME AND I THINK WE'LL 7126 05:03:28,160 --> 05:03:29,600 TALK ABOUT ONE OR TWO OF THEM 7127 05:03:29,600 --> 05:03:32,960 AND MOST DO NOT AND WE HAVE TO 7128 05:03:32,960 --> 05:03:33,200 TEMPER. 7129 05:03:33,200 --> 05:03:38,360 WHAT WE WANT TO TRY TO AVOID IS 7130 05:03:38,360 --> 05:03:40,360 NUMBER ONE WE'VE SPOKEN IN THE 7131 05:03:40,360 --> 05:03:42,080 PAST ABOUT THAT WE WANTED TO BE 7132 05:03:42,080 --> 05:03:45,960 NOVEL NOT JUST REVIEWING 7133 05:03:45,960 --> 05:03:47,400 SOMETHING THAT'S HAPPENED IN THE 7134 05:03:47,400 --> 05:03:50,520 PAST AND TWO WE WANT TO AVOID 7135 05:03:50,520 --> 05:03:55,080 GIVING FOR LACK OF A BETTER TERM 7136 05:03:55,080 --> 05:03:57,360 FALSE HOPE BY CITING STUDIES TOO 7137 05:03:57,360 --> 05:04:00,000 SMALL TO GIVE US THE ANSWERS. 7138 05:04:00,000 --> 05:04:03,880 THESE TWO THINGS THAT I'M CITED 7139 05:04:03,880 --> 05:04:05,200 ARE EARLY MEANING THEY'RE TOOLS 7140 05:04:05,200 --> 05:04:09,040 THAT ARE BEING TESTED FOR THE 7141 05:04:09,040 --> 05:04:10,680 FIRST OR SECOND TIME HAVING BEEN 7142 05:04:10,680 --> 05:04:14,120 PROVEN OVER AND OVER AGAIN BUT 7143 05:04:14,120 --> 05:04:15,560 THE STUDIES ARE LARGE ENOUGH 600 7144 05:04:15,560 --> 05:04:17,680 UNDER SERVED CHILDREN THE 7145 05:04:17,680 --> 05:04:18,840 STUDIES ARE LARGE ENOUGH WE CAN 7146 05:04:18,840 --> 05:04:20,560 BE CONFIDENT IN THE STUDIES 7147 05:04:20,560 --> 05:04:23,280 RESULT WE JUST DON'T KNOW HOW 7148 05:04:23,280 --> 05:04:24,920 BROADLY APPLICABLE THEY ARE. 7149 05:04:24,920 --> 05:04:26,080 THAT'S WHAT I HAVE TO SAY ABOUT 7150 05:04:26,080 --> 05:04:27,600 THAT AND OTHERS MAY ADD TO IT AS 7151 05:04:27,600 --> 05:04:29,960 WELL. 7152 05:04:29,960 --> 05:04:37,320 ALICE. 7153 05:04:37,320 --> 05:04:43,320 >> GIVEN ALL THE SENSITIVITY 7154 05:04:43,320 --> 05:04:44,560 AROUND SCREENING I THINK MAYBE 7155 05:04:44,560 --> 05:04:46,120 WE SHOULD WAIT FOR MORE 7156 05:04:46,120 --> 05:04:47,960 DEFINITIVE FINDINGS JUST 7157 05:04:47,960 --> 05:04:50,200 BECAUSE -- I DON'T KNOW. 7158 05:04:50,200 --> 05:04:58,200 IT'S AN ISSUE I CARE ABOUT AND 7159 05:04:58,200 --> 05:04:59,160 I'VE SEEN MEASURES PUSHED OUT 7160 05:04:59,160 --> 05:05:04,720 TOO SOON AND THEN THEY DON'T 7161 05:05:04,720 --> 05:05:07,560 ACTUALLY WITH CONTROL WHATEVER 7162 05:05:07,560 --> 05:05:08,960 THEY DON'T WORK QUITE AS WELL. 7163 05:05:08,960 --> 05:05:10,160 I DON'T KNOW. 7164 05:05:10,160 --> 05:05:12,920 I JUST THINK GIVEN THE 7165 05:05:12,920 --> 05:05:17,600 IMPORTANCE IN TERMS OF WANTING 7166 05:05:17,600 --> 05:05:18,760 TO SEE SCREENING RECOGNIZED, 7167 05:05:18,760 --> 05:05:22,720 MAYBE THE MORE DEFINITIVE 7168 05:05:22,720 --> 05:05:23,000 STUDIES. 7169 05:05:23,000 --> 05:05:26,680 >> FAIR ENOUGH. 7170 05:05:26,680 --> 05:05:28,160 ALICE, ARE THERE ANY IN THE 7171 05:05:28,160 --> 05:05:28,880 CATEGORY THAT SPEAK TO YOU 7172 05:05:28,880 --> 05:05:32,560 BECAUSE THE OTHERS I NOTICED 7173 05:05:32,560 --> 05:05:33,960 WERE MORE ABOUT WHAT'S HAPPENING 7174 05:05:33,960 --> 05:05:35,760 IN THE WORLD RIGHT NOW AND 7175 05:05:35,760 --> 05:05:37,320 SCREENING LIKE THIS IN THE 7176 05:05:37,320 --> 05:05:40,720 ARTICLE WHERE THEY'RE LOOKING AT 7177 05:05:40,720 --> 05:05:43,800 TRENDS IN PEDIATRICIAN SCREENING 7178 05:05:43,800 --> 05:05:45,760 DEFINING THE STATE OF AFFAIRS 7179 05:05:45,760 --> 05:05:47,960 BUDS NOT AN ADVANCE IN HELPING 7180 05:05:47,960 --> 05:05:51,760 US KNOW WHAT TO DO. 7181 05:05:51,760 --> 05:05:55,200 >> FOR ME THE STUDIES THAT SPEAK 7182 05:05:55,200 --> 05:05:57,600 TO WHAT IS HAPPENING AND THE 7183 05:05:57,600 --> 05:05:58,680 ARTICLE SPEAKING TO DISPARITIES 7184 05:05:58,680 --> 05:05:59,920 IS PARTICULARLY IMPORTANT. 7185 05:05:59,920 --> 05:06:05,160 >> THAT'S THIS ONE HERE THE 7186 05:06:05,160 --> 05:06:05,960 CONSTANTINO ARTICLE. 7187 05:06:05,960 --> 05:06:06,280 THANK YOU. 7188 05:06:06,280 --> 05:06:08,120 THAT'S A GOOD NOMINATION TO 7189 05:06:08,120 --> 05:06:08,360 CONSIDER. 7190 05:06:08,360 --> 05:06:09,720 LET ME CHANGE THE COLOR OF THAT 7191 05:06:09,720 --> 05:06:11,920 HIGHLIGHT WHICH IS MY OWN SHORT 7192 05:06:11,920 --> 05:06:13,640 HAND FOR THINGS I PERSONALLY WAS 7193 05:06:13,640 --> 05:06:14,000 INTERESTED IN. 7194 05:06:14,000 --> 05:06:19,200 I APPRECIATE THAT INPUT. 7195 05:06:19,200 --> 05:06:22,160 AND YOU SHOULD BE LISTENING WHAT 7196 05:06:22,160 --> 05:06:23,320 TO VOTE FOR. 7197 05:06:23,320 --> 05:06:24,880 ONE MORE COMMENT ON THE FIRST 7198 05:06:24,880 --> 05:06:27,000 GROUP AND THEN WE SHOULD MOVE ON 7199 05:06:27,000 --> 05:06:28,600 TO THE NEXT. 7200 05:06:28,600 --> 05:06:28,800 DENA. 7201 05:06:28,800 --> 05:06:30,120 >> A CLARIFICATION. 7202 05:06:30,120 --> 05:06:35,200 I HAVE A 2000 AND 2021 DOCUMENT 7203 05:06:35,200 --> 05:06:39,440 WITH VERY SIMILAR NAMES. 7204 05:06:39,440 --> 05:06:42,000 >> THE DOCUMENT WE'RE WORKING ON 7205 05:06:42,000 --> 05:06:46,400 NOW IS 2020. 7206 05:06:46,400 --> 05:06:52,240 THE 2021 DOCUMENT WE'LL CONSIDER 7207 05:06:52,240 --> 05:06:52,440 THAT. 7208 05:06:52,440 --> 05:06:53,680 WHEN WILL WE WORK ON FINALIZING 7209 05:06:53,680 --> 05:06:54,640 THAT ONE? 7210 05:06:54,640 --> 05:06:56,200 >> IN APRIL. 7211 05:06:56,200 --> 05:06:56,760 WE'RE CATCHING UP. 7212 05:06:56,760 --> 05:06:58,120 >> I'M CLEAR NOW, THANK YOU. 7213 05:06:58,120 --> 05:07:11,200 I WAS JUST CONFUSED. 7214 05:07:11,200 --> 05:07:12,560 >> JOSH ARE YOU GOING TO GO BACK 7215 05:07:12,560 --> 05:07:14,360 TO THE ONES WITH QUESTIONS. 7216 05:07:14,360 --> 05:07:16,960 >> LET ME START SHARING. 7217 05:07:16,960 --> 05:07:18,520 WE DON'T NEED TO DECIDE ON THEM 7218 05:07:18,520 --> 05:07:19,200 IS THE ISSUE. 7219 05:07:19,200 --> 05:07:21,160 I THINK PEOPLE WILL VOTE, NO? 7220 05:07:21,160 --> 05:07:23,200 >> THE PROBLEM IS THAT WE DON'T 7221 05:07:23,200 --> 05:07:26,520 KNOW WHETHER WE SHOULD INCLUDE 7222 05:07:26,520 --> 05:07:27,760 THEM ON THE BALLOT. 7223 05:07:27,760 --> 05:07:29,240 ARE WE INCLUDING ANYTHING ON THE 7224 05:07:29,240 --> 05:07:35,760 BALLOT? 7225 05:07:35,760 --> 05:07:37,640 >> IN MY MIND THEY'RE NOT 7226 05:07:37,640 --> 05:07:38,920 HARMFUL TO INCLUDE IN THE 7227 05:07:38,920 --> 05:07:39,280 BALLOT. 7228 05:07:39,280 --> 05:07:41,840 >> IT WAS JUST IN THE PAST? 7229 05:07:41,840 --> 05:07:43,200 I'M OPEN TO OTHER SUGGESTIONS? 7230 05:07:43,200 --> 05:07:45,000 WE HAD MOST THE ARTICLES 7231 05:07:45,000 --> 05:07:48,000 FOCUSSED ON ASD BUT WE'RE FINE 7232 05:07:48,000 --> 05:07:49,320 IF THE COMMITTEE WANTS TO 7233 05:07:49,320 --> 05:07:52,680 INCLUDE THINGS ABOUT DEVELOPMENT 7234 05:07:52,680 --> 05:07:53,120 OR OTHER THINGS. 7235 05:07:53,120 --> 05:07:55,120 JUST WHERE IS THE LINE FOR WHAT 7236 05:07:55,120 --> 05:07:58,080 GETS INCLUDED AS A CONSIDERATION 7237 05:07:58,080 --> 05:07:59,360 FOR AN AUTISM ADVANCE. 7238 05:07:59,360 --> 05:08:00,520 BUT THE COMMITTEE WANTS TO 7239 05:08:00,520 --> 05:08:02,760 INCLUDE THEM, THEY'RE FINE. 7240 05:08:02,760 --> 05:08:04,760 >> SO SUSAN, LETS TAKE A VOTE ON 7241 05:08:04,760 --> 05:08:08,320 THESE TWO WITH THAT IN MIND. 7242 05:08:08,320 --> 05:08:11,080 IT'S NOT A CRITERIA I DISCUSSED 7243 05:08:11,080 --> 05:08:12,160 EARLIER BUT COULD HAVE HAD IN 7244 05:08:12,160 --> 05:08:12,960 RESPONSE TO PAUL. 7245 05:08:12,960 --> 05:08:16,680 WE TRY TO FOCUS ON ARTICLES THAT 7246 05:08:16,680 --> 05:08:18,680 ARE FOCUSSED ON AUTISM. 7247 05:08:18,680 --> 05:08:20,000 NOW, THESE TWO ACTUALLY ARE 7248 05:08:20,000 --> 05:08:21,240 SLIGHTLY DIFFERENT IN THAT 7249 05:08:21,240 --> 05:08:21,760 REGARD. 7250 05:08:21,760 --> 05:08:23,920 ONE IS REMEMBER I MENTIONED THAT 7251 05:08:23,920 --> 05:08:26,520 THE OTHER ARTICLE ON TRENDS IN 7252 05:08:26,520 --> 05:08:28,160 WHEN PEDIATRICIANS ARE SCREENING 7253 05:08:28,160 --> 05:08:30,600 FOR AND THIS ARTICLE IS ABOUT 7254 05:08:30,600 --> 05:08:31,360 DEVELOPMENT DISABILITIES WRIT 7255 05:08:31,360 --> 05:08:32,160 LARGE AND NOT JUST AUTISM. 7256 05:08:32,160 --> 05:08:34,360 THAT'S THE FIRST ONE. 7257 05:08:34,360 --> 05:08:37,480 THE SECOND ONE WHICH IS 7258 05:08:37,480 --> 05:08:42,480 VALIDATION OF THE NIH TOOLBOX 7259 05:08:42,480 --> 05:08:43,480 IT'S VALIDATION OF A TOOLBOX AND 7260 05:08:43,480 --> 05:08:46,480 THEY'RE VALIDATING IT IN FRAGILE 7261 05:08:46,480 --> 05:08:49,320 X IS MY RECOLLECTION AND A 7262 05:08:49,320 --> 05:08:52,000 COUPLE OF ANOTHER 7263 05:08:52,000 --> 05:08:53,040 NEURODEVELOPMENTAL DISORDER 7264 05:08:53,040 --> 05:08:53,560 INCLUDING AUTISM. 7265 05:08:53,560 --> 05:08:55,880 IT'S A LITTLE BIT OF A GRAY AREA 7266 05:08:55,880 --> 05:09:00,280 WHETHER IT IS SUFFICIENT BY 7267 05:09:00,280 --> 05:09:02,200 DEALING WITH AUTISM. 7268 05:09:02,200 --> 05:09:04,200 IF RESTRICTING ARTICLES THEN 7269 05:09:04,200 --> 05:09:05,600 SUSAN MAYBE WHAT YOU'RE SAYING 7270 05:09:05,600 --> 05:09:07,800 IS WE SHOULD BE ELIMINATING 7271 05:09:07,800 --> 05:09:09,080 THESE ARTICLES EVEN FROM THE 7272 05:09:09,080 --> 05:09:09,880 LARGER ISSUE. 7273 05:09:09,880 --> 05:09:12,200 WE'LL HAVE THE 20 WE VOTED ON 7274 05:09:12,200 --> 05:09:15,000 AND THEN ALL THE OTHER 7275 05:09:15,000 --> 05:09:16,720 NOMINATIONS AND QUESTION WHETHER 7276 05:09:16,720 --> 05:09:20,560 WE SHOULD INCLUDE THESE AT ALL 7277 05:09:20,560 --> 05:09:22,560 >> IT'S A QUESTION WHETHER THESE 7278 05:09:22,560 --> 05:09:24,280 SHOULD BE ON THE BALLOT FOR 7279 05:09:24,280 --> 05:09:26,960 THINGS CONSIDERED AUTISM 7280 05:09:26,960 --> 05:09:27,200 ADVANCES. 7281 05:09:27,200 --> 05:09:30,360 >> WHY DON'T WE GO TO THE POLL 7282 05:09:30,360 --> 05:09:30,560 THEN. 7283 05:09:30,560 --> 05:09:32,280 LET'S DO PUT UP THE POLL. 7284 05:09:32,280 --> 05:09:35,280 THE QUESTION FOR EACH OF THE 7285 05:09:35,280 --> 05:09:36,960 ARTICLES SEPARATELY WHETHER IT'S 7286 05:09:36,960 --> 05:09:39,720 SPECIFIC ENOUGH TO ASD WHETHER 7287 05:09:39,720 --> 05:09:42,360 WITH WANT TO INCLUDE IT ON THE 7288 05:09:42,360 --> 05:09:46,040 BALLOT TO BE INCLUDED ON. 7289 05:09:46,040 --> 05:09:50,080 EVERYBODY SHOULD VOTE IF IT 7290 05:09:50,080 --> 05:09:51,720 POPPED UP ON YOUR SCREEN IF 7291 05:09:51,720 --> 05:09:52,760 YOU'RE ON THE COMMITTEE AND SAY 7292 05:09:52,760 --> 05:09:53,960 YES OR NO BECAUSE THEY'RE 7293 05:09:53,960 --> 05:10:25,360 DIFFERENT ISSUES PRESENTED. 7294 05:10:25,360 --> 05:10:27,240 WHILE WE'RE WAITING FOR RESULTS 7295 05:10:27,240 --> 05:10:28,640 LET'S MOVE ON TO QUESTION 2. 7296 05:10:28,640 --> 05:10:31,160 THERE WERE A NUMBER OF ARTICLES 7297 05:10:31,160 --> 05:10:32,320 ON THE BIOLOGY OF AUTISM. 7298 05:10:32,320 --> 05:10:35,720 THE RESULTS ARE MIXED FOR THE 7299 05:10:35,720 --> 05:10:38,160 SECOND ARTICLE AND MORE OF A 7300 05:10:38,160 --> 05:10:40,240 SIGNIFICANT NO TO THE FIRST. 7301 05:10:40,240 --> 05:10:43,280 I WOULD SUGGEST SUSAN BASED ON 7302 05:10:43,280 --> 05:10:45,040 THE VOTE IS CLOSE ENOUGH ON 7303 05:10:45,040 --> 05:10:46,920 NUMBER TWO AND SHOULD INCLUDE IT 7304 05:10:46,920 --> 05:10:48,080 TO BE INCLUSIVE BUT THE FIRST 7305 05:10:48,080 --> 05:10:59,720 ONE WE CAN ELIMINATE. 7306 05:10:59,720 --> 05:11:01,960 THERE'S A NUMBER OF ADVANCES 7307 05:11:01,960 --> 05:11:04,240 HERE MANY WHAT WE MAY TERM BASIC 7308 05:11:04,240 --> 05:11:08,520 SCIENCE ADVANCES ADVANCES IN THE 7309 05:11:08,520 --> 05:11:09,760 BIOLOGY THAT HELP US UNDERSTAND 7310 05:11:09,760 --> 05:11:15,160 THE PROCESSES UNDERLYING IT BUT 7311 05:11:15,160 --> 05:11:23,720 NOT YET PRIMED FOR TREATMENT 7312 05:11:23,720 --> 05:11:24,040 DEVELOPMENTS. 7313 05:11:24,040 --> 05:11:26,280 >> THE NEXT ONE IS QUESTIONS FOR 7314 05:11:26,280 --> 05:11:27,280 IS QUESTION FOUR. 7315 05:11:27,280 --> 05:11:29,960 WOULD ANYONE LIKE TO MAKE ANY 7316 05:11:29,960 --> 05:11:31,240 COMMENTS ABOUT ANY OF THE 7317 05:11:31,240 --> 05:11:34,080 ARTICLES NOMINATED IN QUESTION 7318 05:11:34,080 --> 05:11:35,720 TWO EITHER FOR TO LOBBY FOR THEM 7319 05:11:35,720 --> 05:11:41,120 OR TO LOBBY AGAINST THEM? 7320 05:11:41,120 --> 05:11:44,080 >> WE HAVE A NEW SLIDE WITH THE 7321 05:11:44,080 --> 05:11:46,800 SPECIFIC QUESTIONS? 7322 05:11:46,800 --> 05:11:47,240 I'M SORRY. 7323 05:11:47,240 --> 05:11:48,680 >> NOT IN TWO BUT ASKING FOR 7324 05:11:48,680 --> 05:11:51,160 QUESTIONS FROM THE NOMINATORS OR 7325 05:11:51,160 --> 05:11:52,800 ANYBODY WHO HAS CONCERNS ABOUT 7326 05:11:52,800 --> 05:11:55,880 THE ARTICLE NOMINATING QUESTION 7327 05:11:55,880 --> 05:11:56,040 TWO. 7328 05:11:56,040 --> 05:12:01,000 THE QUESTION ITSELF IS JUST THE 7329 05:12:01,000 --> 05:12:03,280 THEMES FROM THE FIRST AND THE 7330 05:12:03,280 --> 05:12:04,320 SECOND QUESTION IS ABOUT 7331 05:12:04,320 --> 05:12:04,560 BIOLOGY. 7332 05:12:04,560 --> 05:12:06,960 WE HAVE NOM NAILINGS OF ARTICLES 7333 05:12:06,960 --> 05:12:07,560 THAT SPEAK TO THE BIOLOGY OF 7334 05:12:07,560 --> 05:12:14,520 AUTISM. 7335 05:12:14,520 --> 05:12:23,160 >> IT'S AN A DOCUMENT LABELLED 7336 05:12:23,160 --> 05:12:23,360 2020. 7337 05:12:23,360 --> 05:12:24,840 >> I'LL PULL THEM UP IF WE CAN 7338 05:12:24,840 --> 05:12:44,240 STOP THE OTHER SHARING. 7339 05:12:44,240 --> 05:12:45,920 >> NOW THE QUESTIONS UNDER 7340 05:12:45,920 --> 05:12:46,960 QUESTION TWO, BIOLOGY. 7341 05:12:46,960 --> 05:12:48,160 THERE'S A NUMBER OF ARTICLES 7342 05:12:48,160 --> 05:12:53,360 THAT HAVE TO DO WITH GENES 7343 05:12:53,360 --> 05:12:59,040 ASSOCIATED WITH AUTISM AND THEIR 7344 05:12:59,040 --> 05:13:00,000 BIOLOGICAL CONSEQUENCES 7345 05:13:00,000 --> 05:13:05,160 INCLUDING THIS ONE ON MOTOR 7346 05:13:05,160 --> 05:13:07,160 FUNCTION AND THEY TESTED A DRUG 7347 05:13:07,160 --> 05:13:08,120 WHICH SUGGEST THE POSSIBILITY OF 7348 05:13:08,120 --> 05:13:09,200 A TREATMENT TARGET. 7349 05:13:09,200 --> 05:13:13,000 I'M NOT SURE AND MAYBE SOME OF 7350 05:13:13,000 --> 05:13:16,520 YOU CAN TALK TO ME ABOUT HOW 7351 05:13:16,520 --> 05:13:17,560 IMPORTANT MORT SYSTEMS ARE BUT 7352 05:13:17,560 --> 05:13:19,240 THAT'S WHAT THE FOCUS OF THE 7353 05:13:19,240 --> 05:13:27,240 STUDY WAS. 7354 05:13:27,240 --> 05:13:29,960 THIS HAS TO DO WITH THE 7355 05:13:29,960 --> 05:13:31,240 TRAJECTORY OF AUTISM AND 7356 05:13:31,240 --> 05:13:32,680 COGNITIVE ABILITY AND ONE OF THE 7357 05:13:32,680 --> 05:13:34,160 INTERESTING THINGS FROM THIS 7358 05:13:34,160 --> 05:13:38,440 STUDY ALSO NOMINATED BY OUR 7359 05:13:38,440 --> 05:13:40,440 FOLKS FROM THE OFFICE OF 7360 05:13:40,440 --> 05:13:43,320 RESEARCH AND COORDINATION AT IMH 7361 05:13:43,320 --> 05:13:47,440 SHOWED PARTICIPANTS IN SCHOOLS 7362 05:13:47,440 --> 05:13:50,800 SHOWED LESS SIGNIFICANT SYMPTOMS 7363 05:13:50,800 --> 05:13:52,280 AT 23 YEARS OLD VERSUS THOSE IN 7364 05:13:52,280 --> 05:13:53,160 PRIVATE SETTINGS. 7365 05:13:53,160 --> 05:13:55,280 I DON'T KNOW HOW CONFIDENT WE 7366 05:13:55,280 --> 05:13:59,640 ARE IN THAT. 7367 05:13:59,640 --> 05:14:01,600 SAM. 7368 05:14:01,600 --> 05:14:04,000 EYE AGREE MOTOR IS CRITICAL AND 7369 05:14:04,000 --> 05:14:05,040 VERY IMPORTANT AND PARTICULARLY 7370 05:14:05,040 --> 05:14:07,120 TO PEOPLE WHO ARE NON-SPEAKING. 7371 05:14:07,120 --> 05:14:10,240 MANY PEOPLE WHO ARE NON-SPEAKING 7372 05:14:10,240 --> 05:14:11,720 REPORT HAVING SIGNIFICANT MOTOR 7373 05:14:11,720 --> 05:14:13,120 PLANNING CONCERNS AND WE REALLY 7374 05:14:13,120 --> 05:14:15,840 NEED TO KNOW MORE ABOUT THE ROLE 7375 05:14:15,840 --> 05:14:19,240 OF MOTOR IN AUTISM. 7376 05:14:19,240 --> 05:14:22,760 I THINK THAT'S VERY INTERESTING. 7377 05:14:22,760 --> 05:14:25,520 I THOUGHT THE SLEEP STUDY WAS 7378 05:14:25,520 --> 05:14:27,360 ALSO VERY INTERESTING. 7379 05:14:27,360 --> 05:14:28,640 SLEEP IS AN IMPORTANT CONCERN 7380 05:14:28,640 --> 05:14:33,360 FOR A LOT OF PEOPLE IN OUR 7381 05:14:33,360 --> 05:14:34,480 COMMUNITY AND GETTING AN 7382 05:14:34,480 --> 05:14:37,160 UNDERSTANDING OF THE 7383 05:14:37,160 --> 05:14:39,440 PHYSIOLOGICAL UNDER PINNINGS OF 7384 05:14:39,440 --> 05:14:47,040 SLEEP ONSET ISSUES COULD REALLY 7385 05:14:47,040 --> 05:14:49,240 HELP MAYBE LEAD TO BETTER 7386 05:14:49,240 --> 05:14:50,440 UNDERSTANDING OF INTERVENTIONS. 7387 05:14:50,440 --> 05:14:53,160 I WAS CONFUSED ABOUT THE STUDY 7388 05:14:53,160 --> 05:14:54,760 NOT THAT I THINK IT'S A BAD 7389 05:14:54,760 --> 05:14:55,040 STUDY. 7390 05:14:55,040 --> 05:14:56,760 IT LOOKS LIKE A GREAT STUDY BUT 7391 05:14:56,760 --> 05:14:59,960 I DON'T KNOW WHY IT'S IN 7392 05:14:59,960 --> 05:15:03,000 QUESTION TWO AND THOUGHT WE 7393 05:15:03,000 --> 05:15:04,240 COULD TALK ABOUT THAT. 7394 05:15:04,240 --> 05:15:06,440 >> I'M INTO THE SURE WHY IT GOT 7395 05:15:06,440 --> 05:15:09,120 CATEGORIZED ON THAT EITHER. 7396 05:15:09,120 --> 05:15:11,200 MAYBE THE FOCUS ON COGNITION 7397 05:15:11,200 --> 05:15:15,920 ABILITY BUT GOOD POINT. 7398 05:15:15,920 --> 05:15:19,160 >> I THINK IT'S AN IMPORTANT 7399 05:15:19,160 --> 05:15:23,600 STUDY AND THOUGHT IT WAS WEIRD. 7400 05:15:23,600 --> 05:15:25,560 >> IT FITS INTO THE STRATEGIC 7401 05:15:25,560 --> 05:15:26,280 PLAN. 7402 05:15:26,280 --> 05:15:28,000 WELL, I LIKE IT. 7403 05:15:28,000 --> 05:15:28,960 >> THANKS SAM. 7404 05:15:28,960 --> 05:15:30,440 I APPRECIATE THE INPUT ON THE 7405 05:15:30,440 --> 05:15:32,280 MOTOR ISSUES. 7406 05:15:32,280 --> 05:15:35,160 IT'S HELPFUL. 7407 05:15:35,160 --> 05:15:35,360 PAUL. 7408 05:15:35,360 --> 05:15:41,160 A GENERAL COMMENT ON THIS 7409 05:15:41,160 --> 05:15:42,880 CATEGORY AND I'LL JUMP ON THE 7410 05:15:42,880 --> 05:15:47,280 BANDWAGON AND I TALKED ABOUT HOW 7411 05:15:47,280 --> 05:15:48,480 SENSORY ISSUES ARE IN THE 7412 05:15:48,480 --> 05:15:49,280 DIAGNOSTIC CRITERIA AND I THINK 7413 05:15:49,280 --> 05:15:51,680 SLEEP IS IMPORTANT THOUGH IT'S 7414 05:15:51,680 --> 05:15:52,640 NOT THE DIAGNOSTIC CRITERIA. 7415 05:15:52,640 --> 05:15:59,160 I LIKE ALL THE TOPICS. 7416 05:15:59,160 --> 05:16:01,360 I TYPICALLY DON'T GET EXCITE 7417 05:16:01,360 --> 05:16:03,360 ABOUT THE BROAD SIGNIFICANCE OF 7418 05:16:03,360 --> 05:16:05,280 ANY RESEARCH PAPER THAT S ON A 7419 05:16:05,280 --> 05:16:10,640 SINGLE GENE ESPECIALLY WHEN THEY 7420 05:16:10,640 --> 05:16:17,640 ACCOUNT FOR SMALL FRACTION OF 7421 05:16:17,640 --> 05:16:20,840 CASES OF AUTISM AND FNR1 PROJECT 7422 05:16:20,840 --> 05:16:24,480 X IT INTERACTS WITH OTHER GENES 7423 05:16:24,480 --> 05:16:27,760 IMPLICATED IN THE UNDERLYING 7424 05:16:27,760 --> 05:16:30,160 BIOLOGY OF AUTISM BUT IN SINGLE 7425 05:16:30,160 --> 05:16:31,840 GENE I'M SKEPTICAL ABOUT. 7426 05:16:31,840 --> 05:16:35,760 >> I SHARE YOUR SKEPTICISM ABOUT 7427 05:16:35,760 --> 05:16:41,160 THE RELEVANCE OF SINGLE GENES. 7428 05:16:41,160 --> 05:16:59,240 I CAN'T ARGUE WITH REGARD TO THE 7429 05:16:59,240 --> 05:17:01,520 MICRO-XON1 AND IT CLEARLY 7430 05:17:01,520 --> 05:17:06,880 CREATES A SYNDROME WHICH 7431 05:17:06,880 --> 05:17:10,280 INCLUDES AUTISM. 7432 05:17:10,280 --> 05:17:16,360 INFORMATION HOW IT EXPERTS 7433 05:17:16,360 --> 05:17:20,200 AFFECTS ON THE BRAIN CAN SUGGEST 7434 05:17:20,200 --> 05:17:21,360 TREATMENT TARGETS AT THE LEAST 7435 05:17:21,360 --> 05:17:23,200 WOULD HELP PEOPLE WITH SHANK 7436 05:17:23,200 --> 05:17:25,480 THREE MUTATIONS AND HELP OTHERS 7437 05:17:25,480 --> 05:17:25,720 AS WELL. 7438 05:17:25,720 --> 05:17:26,760 IN GENERAL, I THINK YOU'RE 7439 05:17:26,760 --> 05:17:27,200 RIGHT. 7440 05:17:27,200 --> 05:17:32,800 A STUDY THAT FOCUSES IN ON ONE 7441 05:17:32,800 --> 05:17:36,280 GENE IS OFTEN HAS CHALLENGES. 7442 05:17:36,280 --> 05:17:38,920 ANY OTHER COMMENTS WITH THE 7443 05:17:38,920 --> 05:17:39,360 PAPERS HERE? 7444 05:17:39,360 --> 05:17:41,760 PEOPLE WANT TO FOCUS ON THE 7445 05:17:41,760 --> 05:17:45,480 TREATMENT AND MOTOR CONTROL AND 7446 05:17:45,480 --> 05:17:53,960 McDUFFY ON SLEEP AND THERE'S A 7447 05:17:53,960 --> 05:17:56,960 QUESTION AND THE COHORT THAT'S A 7448 05:17:56,960 --> 05:17:57,960 FASCINATING STUDY AND I'LL NOTE 7449 05:17:57,960 --> 05:17:59,960 THERE'S ONE ON SEX DIFFERENCES 7450 05:17:59,960 --> 05:18:05,600 THAT STUDIED INDIVIDUALS WITH 7451 05:18:05,600 --> 05:18:05,840 AUTISM 7452 05:18:05,840 --> 05:18:06,960 >> A BRIEF COMMENT ABOUT THE 7453 05:18:06,960 --> 05:18:08,640 FACT THERE'S NOMINATIONS IN 7454 05:18:08,640 --> 05:18:10,000 THERE FROM OUR OFFICE. 7455 05:18:10,000 --> 05:18:11,240 WE WERE TRYING TO HELP JUMP 7456 05:18:11,240 --> 05:18:12,560 START THE PROCESS BECAUSE WE 7457 05:18:12,560 --> 05:18:14,560 CAME INTO THE YEAR HALF BAY 7458 05:18:14,560 --> 05:18:15,760 THROUGH THE YEAR AND SO WE 7459 05:18:15,760 --> 05:18:17,320 HELPED FILL IN PLACES WHERE 7460 05:18:17,320 --> 05:18:20,920 THERE WERE GAPS BUT ORDINARILY 7461 05:18:20,920 --> 05:18:23,200 WE TAKE NOM NATIONS AND FOR 2021 7462 05:18:23,200 --> 05:18:24,800 WE TRIED TO FILL IN THE GAPS 7463 05:18:24,800 --> 05:18:26,560 WHERE THERE MAY NOT HAVE BEEN 7464 05:18:26,560 --> 05:18:27,920 ENOUGH NOMINATIONS. 7465 05:18:27,920 --> 05:18:29,200 HAPPY TO STEP BACK AT ANY POINT. 7466 05:18:29,200 --> 05:18:31,560 WE'RE JUST TRYING TO HELP OUT. 7467 05:18:31,560 --> 05:18:32,160 >> OKAY. 7468 05:18:32,160 --> 05:18:42,920 LET'S MOVE ON TO QUESTION THREE. 7469 05:18:42,920 --> 05:18:46,160 LET'S ASK IF THERE'S COMMENTS ON 7470 05:18:46,160 --> 05:18:46,880 THE NOMINATIONS IN QUESTION 7471 05:18:46,880 --> 05:18:47,320 THREE. 7472 05:18:47,320 --> 05:18:53,880 HERE WE'RE TALKING ABOUT RISK 7473 05:18:53,880 --> 05:18:56,280 FACT ERS WITH ENVIRONMENTAL RISK 7474 05:18:56,280 --> 05:18:57,720 FACTORS WE'VE BEEN TRYING TO 7475 05:18:57,720 --> 05:19:02,960 PUSH AND THANK OUR COLLEAGUES AT 7476 05:19:02,960 --> 05:19:06,680 THE NIH AND RISK FACTORS ON A 7477 05:19:06,680 --> 05:19:07,920 NUMBER OF CONDITIONS AND 7478 05:19:07,920 --> 05:19:08,160 DISORDER. 7479 05:19:08,160 --> 05:19:10,640 THE ARTICLE TALKS ABOUT GENE BY 7480 05:19:10,640 --> 05:19:15,720 ENVIRONMENT INTERACTIONS AND 7481 05:19:15,720 --> 05:19:21,120 THERE'S ANOTHER ONE HERE AND THE 7482 05:19:21,120 --> 05:19:23,560 GENETIC ONE AND ANOTHER ONE I 7483 05:19:23,560 --> 05:19:25,960 WAS LOOKING AT. 7484 05:19:25,960 --> 05:19:31,320 ANYWAY, I PARTICULARLY LIKE THAT 7485 05:19:31,320 --> 05:19:31,480 ONE. 7486 05:19:31,480 --> 05:19:33,200 ANY OTHER COMMENTS? 7487 05:19:33,200 --> 05:19:35,960 I LIKE THE FIRST ONE THAT LOOKS 7488 05:19:35,960 --> 05:19:40,960 AT THE IMPLICATIONS FOR PARENTAL 7489 05:19:40,960 --> 05:19:41,800 LINEAGE PRIMARILY BECAUSE I SEE 7490 05:19:41,800 --> 05:19:43,360 IT AS AN OPPORTUNITY TO PROVIDE 7491 05:19:43,360 --> 05:19:47,040 MORE INTENSIVE PARENTAL SUPPORT 7492 05:19:47,040 --> 05:19:48,000 ESPECIALLY IN THE EARLY 7493 05:19:48,000 --> 05:19:51,160 INTERVENTION YEARS. 7494 05:19:51,160 --> 05:19:54,920 I DO KNOW SPEAKS AS AN AUTISTIC 7495 05:19:54,920 --> 05:19:57,320 PARENT TRYING TO COORDINATE 7496 05:19:57,320 --> 05:19:58,000 SERVICES AND SUPPORTS WITH 7497 05:19:58,000 --> 05:19:59,840 MULTIPLE THERAPY SESSIONS A WEEK 7498 05:19:59,840 --> 05:20:02,160 AND DEALING WITH SCHOOL SYSTEMS 7499 05:20:02,160 --> 05:20:03,400 WAS SO INCREDIBLY DIFFICULT AND 7500 05:20:03,400 --> 05:20:07,240 I HEAR THAT FROM SO MANY PARENTS 7501 05:20:07,240 --> 05:20:10,920 BUT AUTISTIC PARENTS QUITE OFTEN 7502 05:20:10,920 --> 05:20:16,560 STRUGGLE WITH THE MULTI-TASKING. 7503 05:20:16,560 --> 05:20:19,760 I DON'T KNOW, I HAVE SOME 7504 05:20:19,760 --> 05:20:25,560 CONCERNS BUT LARGELY THINK 7505 05:20:25,560 --> 05:20:27,240 EXAMINING THIS COULD BE HELPFUL. 7506 05:20:27,240 --> 05:20:32,920 >> DENA, THIS IS WHY I VALUE THE 7507 05:20:32,920 --> 05:20:36,000 INPUT WE GET AND LOOKING AT THIS 7508 05:20:36,000 --> 05:20:39,200 AS HO HUM, ANOTHER GENETIC STUDY 7509 05:20:39,200 --> 05:20:42,000 BUT YOU'RE POINTING OUT THIS HAS 7510 05:20:42,000 --> 05:20:45,320 THE POTENTIAL TO INFLUENCE THE 7511 05:20:45,320 --> 05:20:46,960 NEED FOR CARE DELIVERY AND IN 7512 05:20:46,960 --> 05:20:50,560 PARTICULAR SITUATIONS AND I 7513 05:20:50,560 --> 05:20:52,360 THINK THAT'S A HELPFUL INSIGHT. 7514 05:20:52,360 --> 05:20:52,760 THANK YOU. 7515 05:20:52,760 --> 05:20:53,920 OTHER COMMENTS OR QUESTIONS? 7516 05:20:53,920 --> 05:20:58,760 I'LL STOP SHARING. 7517 05:20:58,760 --> 05:21:02,400 I THINK THERE'S SOME QUESTION 7518 05:21:02,400 --> 05:21:04,160 AND QUESTIONS ON ARTICLES FROM 7519 05:21:04,160 --> 05:21:05,680 QUESTION THREE. 7520 05:21:05,680 --> 05:21:08,040 WE DON'T HAVE ANY QUESTION 7521 05:21:08,040 --> 05:21:08,240 THREE. 7522 05:21:08,240 --> 05:21:09,960 NEXT IS QUESTION FOUR. 7523 05:21:09,960 --> 05:21:10,840 >> ALL RIGHT. 7524 05:21:10,840 --> 05:21:12,360 >> LET'S GO TO THOSE THEN SINCE 7525 05:21:12,360 --> 05:21:13,760 WE HAVE THIS UP. 7526 05:21:13,760 --> 05:21:15,160 MOVE TO THE NEXT ONE. 7527 05:21:15,160 --> 05:21:20,200 THERE'S TWO ARTICLES IN QUESTION 7528 05:21:20,200 --> 05:21:30,280 FO 7529 05:21:30,280 --> 05:21:30,680 FOUR. 7530 05:21:30,680 --> 05:21:32,160 WE'LL ASK FOR COMMENTS ABOUT 7531 05:21:32,160 --> 05:21:39,280 ARTICLES YOU ALL WANTED TO 7532 05:21:39,280 --> 05:21:44,520 HEADLINE THAT'S A LITERATURE AND 7533 05:21:44,520 --> 05:21:46,920 ONE IS A META-ANALYSIS WE HAVE 7534 05:21:46,920 --> 05:21:50,520 NOT INCLUDED OR OCCASIONALLY 7535 05:21:50,520 --> 05:21:53,040 INCLUDED META-ANALYSIS REGARDING 7536 05:21:53,040 --> 05:21:57,160 INTERVENTIONS TO DRAFT HEALTH 7537 05:21:57,160 --> 05:21:59,280 OUTCOMES AND PROJECT AIMED 7538 05:21:59,280 --> 05:21:59,600 INTERVENTION. 7539 05:21:59,600 --> 05:22:00,760 THE REASONS WHY WE HAVEN'T 7540 05:22:00,760 --> 05:22:04,160 GENERALLY INCLUDED THESE IS 7541 05:22:04,160 --> 05:22:06,600 BECAUSE THEY'RE TYPICALLY NOT 7542 05:22:06,600 --> 05:22:08,960 VERY NOVEL IN THE SENSE THERE'S 7543 05:22:08,960 --> 05:22:10,520 A REVIEW OF OLD LITERATURE. 7544 05:22:10,520 --> 05:22:11,680 NOW IN THE CASE OF 7545 05:22:11,680 --> 05:22:16,640 META-ANALYSIS, WHEN THE 7546 05:22:16,640 --> 05:22:19,200 META-ANALYSIS REVEALS A NEW 7547 05:22:19,200 --> 05:22:20,480 RESULT OR SOLIDIFIES OUR 7548 05:22:20,480 --> 05:22:22,040 INFORMATION OF THE IMPACT OF A 7549 05:22:22,040 --> 05:22:22,560 RESULT, THEN WE TENDED TO 7550 05:22:22,560 --> 05:22:27,240 INCLUDE IT. 7551 05:22:27,240 --> 05:22:29,440 ANY COMMENTS ABOUT THE ARTICLES 7552 05:22:29,440 --> 05:22:30,600 PARTICULARLY IF WHOEVER 7553 05:22:30,600 --> 05:22:32,000 NOMINATED THEM WANT TO DISCUSS 7554 05:22:32,000 --> 05:22:32,960 WHY THEY NOMINATED THEM MIGHT BE 7555 05:22:32,960 --> 05:22:44,000 HELPFUL. 7556 05:22:44,000 --> 05:22:46,240 >> I PROBABLY -- I DON'T KNOW IF 7557 05:22:46,240 --> 05:22:49,720 I WAS THE ONLY ONE BUT I DID 7558 05:22:49,720 --> 05:22:51,800 NOMINATE THIS PROJECT AIM. 7559 05:22:51,800 --> 05:22:56,200 I UNDERSTAND IT WAS A 7560 05:22:56,200 --> 05:23:01,920 META-ANALYSIS AND A SYSTEMATIC 7561 05:23:01,920 --> 05:23:02,880 REVIEW. 7562 05:23:02,880 --> 05:23:09,840 THIS PARTICULAR ARTICLE AND 7563 05:23:09,840 --> 05:23:12,000 THERE'S VAST AMOUNT OF DATA AND 7564 05:23:12,000 --> 05:23:13,680 HIGHLIGHTS WHAT SORTS OF 7565 05:23:13,680 --> 05:23:15,240 PROXIMAL AND DISTAL FACTORS NEED 7566 05:23:15,240 --> 05:23:18,000 MORE ATTENTION WHEN IT COMES TO 7567 05:23:18,000 --> 05:23:21,080 AUTISM BEHAVIORAL INTERVENTIONS. 7568 05:23:21,080 --> 05:23:23,240 THEY REALLY FOCUS ON THINGS LIKE 7569 05:23:23,240 --> 05:23:26,320 PUBLICATION BIAS. 7570 05:23:26,320 --> 05:23:32,480 THEY IDENTIFIED A LOT OF ISSUES 7571 05:23:32,480 --> 05:23:37,800 THAT SHOULD IN FACT INFLUENCE 7572 05:23:37,800 --> 05:23:41,760 THE STRATEGIC PLAN 7573 05:23:41,760 --> 05:23:42,120 RECOMMENDATIONS. 7574 05:23:42,120 --> 05:23:44,000 THIS PROJECT WAS CONSIDERED 7575 05:23:44,000 --> 05:23:46,000 OUTSTANDING BY THE OFFICE OF 7576 05:23:46,000 --> 05:23:47,280 SOCIETY FOR AUTISM RESEARCH. 7577 05:23:47,280 --> 05:23:49,360 IT WON AN AWARD. 7578 05:23:49,360 --> 05:23:54,480 I THINK IT'S BEEN CITED MANY 7579 05:23:54,480 --> 05:23:56,080 TIMES AND PEOPLE REFER TO IT 7580 05:23:56,080 --> 05:23:57,240 WHEN THEY THINK ABOUT WHAT IS 7581 05:23:57,240 --> 05:23:59,520 NEEDED AND WHAT QUESTIONS ARE 7582 05:23:59,520 --> 05:24:00,240 STILL RELEVANT. 7583 05:24:00,240 --> 05:24:06,080 I NOMINATED IT SO I'M ADVOCATING 7584 05:24:06,080 --> 05:24:08,560 TO KEEP IT BUT HAPPY TO DISCUSS. 7585 05:24:08,560 --> 05:24:10,280 >> ANYONE ELSE WANT TO DISCUSS 7586 05:24:10,280 --> 05:24:12,280 EITHER OF THESE TWO ARTICLES? 7587 05:24:12,280 --> 05:24:24,000 IF NOT, JULIE, GO AHEAD. 7588 05:24:24,000 --> 05:24:26,360 >> THERE'S REVIEWS UNLESS 7589 05:24:26,360 --> 05:24:30,000 THERE'S SOMETHING EXCEPTIONAL 7590 05:24:30,000 --> 05:24:32,000 THAT BRINGS SOMETHING BRAND NEW 7591 05:24:32,000 --> 05:24:34,880 TO LIGHT WITH HOW THEY LOOK AT 7592 05:24:34,880 --> 05:24:36,320 THE DATA BUT I'LL SAY IT WON'T 7593 05:24:36,320 --> 05:24:39,160 BE THE CASE 99% OF THE TIME AND 7594 05:24:39,160 --> 05:24:43,320 FOR META-ANALYSIS IT SOUNDS LIKE 7595 05:24:43,320 --> 05:24:46,280 WHAT SHE DESCRIBES AND I THINK 7596 05:24:46,280 --> 05:24:47,960 IT BRINGS NEW INFORMATION FROM 7597 05:24:47,960 --> 05:24:51,160 THE STUDIES WE DIDN'T KNOW 7598 05:24:51,160 --> 05:24:51,400 BEFORE. 7599 05:24:51,400 --> 05:24:55,360 I'M MOST FAMILIAR WITH THE ADULT 7600 05:24:55,360 --> 05:24:56,760 LITERATURE AND THERE'S AN 7601 05:24:56,760 --> 05:24:59,360 EXCEPTIONAL AMOUNT OF RENEWS 7602 05:24:59,360 --> 05:25:00,480 REHASHING RESEARCH ALREADY DONE 7603 05:25:00,480 --> 05:25:02,720 AND I WORRY ABOUT ELEVATING 7604 05:25:02,720 --> 05:25:06,640 FACTS TO THE LEVEL OF THE NEW 7605 05:25:06,640 --> 05:25:09,640 RESEARCH AND SELLING SHORT WHAT 7606 05:25:09,640 --> 05:25:11,640 NEEDS TO BE DONE IN SOME DOMAIN. 7607 05:25:11,640 --> 05:25:14,560 A LONG WINDED WAY OF SAYING I 7608 05:25:14,560 --> 05:25:14,760 AGREE. 7609 05:25:14,760 --> 05:25:17,640 >> YOU AGREE -- AND PERSONALLY 7610 05:25:17,640 --> 05:25:19,280 ARE AVERAGING MAYBE IT'S NOT 7611 05:25:19,280 --> 05:25:22,040 APPROPRIATE BUT HAVE NO PROBLEM 7612 05:25:22,040 --> 05:25:25,320 WITH SANDBACK BEING ON THE 7613 05:25:25,320 --> 05:25:25,560 BALLOT. 7614 05:25:25,560 --> 05:25:27,720 >> THAT'S WHAT I'M SAYING. 7615 05:25:27,720 --> 05:25:29,440 >> AND WHILE ELAINE MAKE HER 7616 05:25:29,440 --> 05:25:30,120 COMMENT WHY DON'T YOU PUT UP THE 7617 05:25:30,120 --> 05:25:32,560 POLL. 7618 05:25:32,560 --> 05:25:39,240 >> I DON'T KNOW I'M ADDING 7619 05:25:39,240 --> 05:25:47,560 ANYTHING SIGNIFICANT BUT IN LINE 7620 05:25:47,560 --> 05:25:52,280 OF SYSTEMIC REVIEWS ARE DONE TO 7621 05:25:52,280 --> 05:25:55,040 ASK STUDIES IN AND OF THEMSELVES 7622 05:25:55,040 --> 05:25:59,280 AND FOLLOW THE METHODOLOGY AND 7623 05:25:59,280 --> 05:26:01,320 GLEAN NEW INSIGHTS. 7624 05:26:01,320 --> 05:26:03,240 I THINK JUST BECAUSE IT SAYS 7625 05:26:03,240 --> 05:26:04,480 IT'S A SYSTEMATIC REVIEW IN THE 7626 05:26:04,480 --> 05:26:06,320 TITLE WE DON'T WANT TO SEEM THAT 7627 05:26:06,320 --> 05:26:07,000 IT IS. 7628 05:26:07,000 --> 05:26:12,440 WE DO WANT TO MAKE SPACE FOR 7629 05:26:12,440 --> 05:26:15,840 USING STATE OF THE ART 7630 05:26:15,840 --> 05:26:16,840 METHODOLOGY TO SYNTHESIZE 7631 05:26:16,840 --> 05:26:21,680 INFORMATION FROM ACROSS STUDIES. 7632 05:26:21,680 --> 05:26:22,760 AS LONG AS WE'RE THOUGHTFUL BIT 7633 05:26:22,760 --> 05:26:24,360 I DON'T WANT TO PUT HARD LINES 7634 05:26:24,360 --> 05:26:25,480 IN THE SAND. 7635 05:26:25,480 --> 05:26:27,680 >> JULIE, YOU HAVE YOUR HAND UP 7636 05:26:27,680 --> 05:26:30,080 BUT WENT OFF CAMERA SO I ASSUME 7637 05:26:30,080 --> 05:26:33,280 YOU'RE DONE AND DENA. 7638 05:26:33,280 --> 05:26:35,920 >> JUST QUICK, I NOMINATED THIS 7639 05:26:35,920 --> 05:26:40,600 AND THE REASON WAS A, I DIDN'T 7640 05:26:40,600 --> 05:26:42,760 UNDERSTAND YOUR CRITERIA AND B, 7641 05:26:42,760 --> 05:26:45,440 BECAUSE OF THE RULE OUTS THEY 7642 05:26:45,440 --> 05:26:52,520 HAD IN EXAMINING THE LITERATURE 7643 05:26:52,520 --> 05:27:03,520 THIS WAS THIS WAS FOCUSSED ON 7644 05:27:03,520 --> 05:27:07,240 AUTISTIC ADULTS AND I WASN'T AN 7645 05:27:07,240 --> 05:27:10,480 AUTHOR ON THIS ARTICLE BUT WHEN 7646 05:27:10,480 --> 05:27:12,040 YOU DESCRIBE SYSTEMIC REVIEWS 7647 05:27:12,040 --> 05:27:13,320 AND THEIR ROLE IN THIS 7648 05:27:13,320 --> 05:27:15,600 DETERMINATION AND THE NOVELNESS 7649 05:27:15,600 --> 05:27:17,120 I SEE WHERE YOU'RE COMING FROM. 7650 05:27:17,120 --> 05:27:20,760 THANKS FOR HEARING ME OUT. 7651 05:27:20,760 --> 05:27:23,720 >> IF EVERYONE WOULD ANSWER THE 7652 05:27:23,720 --> 05:27:26,320 POLL AND MEANWHILE IF YOU CAN 7653 05:27:26,320 --> 05:27:27,360 END THE PRESENTATION AND PUT UP 7654 05:27:27,360 --> 05:27:30,000 THE POLL, I'LL GO AHEAD AND 7655 05:27:30,000 --> 05:27:53,840 SHARE MY SCREEN AGAIN. 7656 05:27:53,840 --> 05:27:55,400 THIS SUGGESTIONS TO ANY OTHERS 7657 05:27:55,400 --> 05:27:56,960 THEY'D LIKE IT SEE. 7658 05:27:56,960 --> 05:28:00,960 SO HERE'S THE ONES -- THERE'S 7659 05:28:00,960 --> 05:28:03,480 PATTERNS AND THE REVIEW WE JUST 7660 05:28:03,480 --> 05:28:05,480 MENTIONED. 7661 05:28:05,480 --> 05:28:06,760 RANDOMIZED CONTROL TRIAL 7662 05:28:06,760 --> 05:28:08,480 FUNCTIONAL COMMUNICATION 7663 05:28:08,480 --> 05:28:09,320 TRAINING. 7664 05:28:09,320 --> 05:28:11,240 I WASN'T SURE ABOUT THAT BECAUSE 7665 05:28:11,240 --> 05:28:13,640 NOT APPARENT TO ME HOW LARGER 7666 05:28:13,640 --> 05:28:15,240 GENERALIZABLE AND 38 CHILDREN 7667 05:28:15,240 --> 05:28:19,600 THOUGH IT WAS INTERESTING. 7668 05:28:19,600 --> 05:28:22,960 HERE'S ONE THAT'S IT'S A MOUSE. 7669 05:28:22,960 --> 05:28:24,000 IT'S TREATMENT DEVELOPMENT BUT A 7670 05:28:24,000 --> 05:28:26,200 LITTLE BIT EARLY I THINK. 7671 05:28:26,200 --> 05:28:29,360 I THOUGHT THIS RODGERS ONE WAS 7672 05:28:29,360 --> 05:28:29,960 INTERESTING. 7673 05:28:29,960 --> 05:28:33,640 IT WAS A NEGATIVE RESULT IN A 7674 05:28:33,640 --> 05:28:36,720 SENSE IN LOOKING AT TREATMENT 7675 05:28:36,720 --> 05:28:38,720 INTENSITY INCREASING TREATMENT 7676 05:28:38,720 --> 05:28:47,480 INTENSITY DID NOT IMPROVE 7677 05:28:47,480 --> 05:28:47,760 PERFORMANCE. 7678 05:28:47,760 --> 05:28:49,160 AND ANY OTHER COMMENTS FROM 7679 05:28:49,160 --> 05:28:51,240 ANYBODY ON ANY OF THESE 7680 05:28:51,240 --> 05:28:59,240 ARTICLES? 7681 05:28:59,240 --> 05:29:03,120 >> I AGREE THE INTENSITY IS 7682 05:29:03,120 --> 05:29:03,520 IMPORTANT. 7683 05:29:03,520 --> 05:29:18,280 >> NO ON THE BENEVITES AND 7684 05:29:18,280 --> 05:29:21,000 SANDBANK IN. 7685 05:29:21,000 --> 05:29:21,840 DID YOU WANT TO SAY? 7686 05:29:21,840 --> 05:29:30,360 >> THIS GOES BACK TO THE LAST 7687 05:29:30,360 --> 05:29:35,000 ARTICLE A CENSUS STATEMENT ON 7688 05:29:35,000 --> 05:29:35,440 WEIGHT MANAGEMENT. 7689 05:29:35,440 --> 05:29:37,120 EXPERT REPRESENTS. 7690 05:29:37,120 --> 05:29:39,280 WE AGREE WEIGHT MANAGEMENT IS 7691 05:29:39,280 --> 05:29:40,800 SUPER IMPORTANT BUT I WASN'T 7692 05:29:40,800 --> 05:29:42,240 SURE IF THAUZ WAS FITTING A 7693 05:29:42,240 --> 05:29:43,640 CRITERIA OF WHAT WE'D WANT TO 7694 05:29:43,640 --> 05:29:45,080 PUT IN HERE. 7695 05:29:45,080 --> 05:29:46,640 >> THAT'S A GOOD POINT UNLESS 7696 05:29:46,640 --> 05:29:50,320 THERE'S NEW FINDINGS OR IT'S A 7697 05:29:50,320 --> 05:29:51,920 NEW OBSERVATION WE GENERALLY 7698 05:29:51,920 --> 05:29:52,880 HAVEN'T, I DON'T THINK. 7699 05:29:52,880 --> 05:29:55,440 >> I BELIEVE THAT WAS MAYBE THE 7700 05:29:55,440 --> 05:29:59,240 NEXT SLIDE IN THE SLIDES. 7701 05:29:59,240 --> 05:29:59,720 SORRY. 7702 05:29:59,720 --> 05:30:00,560 I CAN'T REMEMBER WHAT'S ON THE 7703 05:30:00,560 --> 05:30:02,560 SLIDES UNTIL I CLICK ON IT. 7704 05:30:02,560 --> 05:30:04,160 I THINK THERE MIGHT HAVE BEEN A 7705 05:30:04,160 --> 05:30:05,080 COUPLE QUESTIONS FOR MORE 7706 05:30:05,080 --> 05:30:17,920 ARTICLES IN THE SECTION. 7707 05:30:17,920 --> 05:30:19,160 >> THE POLL KEEPS GETTING IN THE 7708 05:30:19,160 --> 05:30:20,920 WAY WHILE WE'RE TRYING TO READ 7709 05:30:20,920 --> 05:30:22,440 THE SCREEN. 7710 05:30:22,440 --> 05:30:28,880 IN THE ARTICLE I DON'T THINK WE 7711 05:30:28,880 --> 05:30:34,120 CAPTURED IN THE DESCRIPTION HERE 7712 05:30:34,120 --> 05:30:35,840 THE IMPLICATIONS OF THE AND 7713 05:30:35,840 --> 05:30:37,720 PEOPLE WITH DIFFERENT ETHNIC 7714 05:30:37,720 --> 05:30:39,680 BACKGROUNDS WHERE THERE'S RACIAL 7715 05:30:39,680 --> 05:30:41,000 ETHNIC DISPARITIES AND 7716 05:30:41,000 --> 05:30:43,120 ELIGIBILITY IN SPENDING ARE NOT 7717 05:30:43,120 --> 05:30:48,200 MOVING INTO RECOGNITION OF THEIR 7718 05:30:48,200 --> 05:30:51,920 ELIGIBILITY FOR MEDICARE AND 7719 05:30:51,920 --> 05:30:54,120 MEDICAID ENROLLMENT AND THIS IS 7720 05:30:54,120 --> 05:30:57,560 EXAMINING THE DISPARITY AND 7721 05:30:57,560 --> 05:31:00,000 THERE'S A HUGE GAP AND DISPARITY 7722 05:31:00,000 --> 05:31:02,000 IN SPENDING. 7723 05:31:02,000 --> 05:31:03,240 I WANTED TO SPEAK TO THAT 7724 05:31:03,240 --> 05:31:04,320 BECAUSE I DON'T THINK KE 7725 05:31:04,320 --> 05:31:05,120 CAPTURED THAT IN THE 7726 05:31:05,120 --> 05:31:05,400 DESCRIPTION. 7727 05:31:05,400 --> 05:31:07,160 GIVEN WHAT WE'RE LOOKING AT IN 7728 05:31:07,160 --> 05:31:08,520 TERMS OF HEALTH CARE DISPARITIES 7729 05:31:08,520 --> 05:31:10,600 I THOUGHT IT WAS TIMELY AT THIS 7730 05:31:10,600 --> 05:31:10,800 POINT. 7731 05:31:10,800 --> 05:31:11,240 >> THANKS. 7732 05:31:11,240 --> 05:31:12,960 I APPRECIATE THAT. 7733 05:31:12,960 --> 05:31:13,160 OKAY. 7734 05:31:13,160 --> 05:31:18,760 WE'RE GO AHEAD AND MOVE ON TO 7735 05:31:18,760 --> 05:31:19,520 QUESTION 5 SERVICES. 7736 05:31:19,520 --> 05:31:27,240 >> SHOULD WE GET BACK TO THE 7737 05:31:27,240 --> 05:31:31,120 SLIDES? 7738 05:31:31,120 --> 05:31:45,200 >> ANY COMMENTS ON ANY OF THESE? 7739 05:31:45,200 --> 05:31:47,120 >> I LIKE THE STUDY LOOKING AT 7740 05:31:47,120 --> 05:31:49,520 PROJECT SEARCH AND AUTISM 7741 05:31:49,520 --> 05:31:50,800 SUPPORTS FOR EMPLOYMENT 7742 05:31:50,800 --> 05:31:51,240 OUTCOMES. 7743 05:31:51,240 --> 05:31:56,080 MY ONLY CAVEAT WOULD BE THAT I'M 7744 05:31:56,080 --> 05:31:57,640 CONCERNED ABOUT SOME BIAS AND 7745 05:31:57,640 --> 05:32:00,360 THE FACT THAT PROJECT SEARCH 7746 05:32:00,360 --> 05:32:02,040 TENDS TO CHOOSE INDIVIDUALS MOST 7747 05:32:02,040 --> 05:32:08,400 LIKELY TO SUCCEED. 7748 05:32:08,400 --> 05:32:10,320 THEY'RE NOT OFTEN WORKING WITH 7749 05:32:10,320 --> 05:32:12,920 PEOPLE TWO STRUGGLE WITH 7750 05:32:12,920 --> 05:32:13,680 EMPLOYMENT SWCH BUT I THINK 7751 05:32:13,680 --> 05:32:16,560 LOOKING AT WHETHER PROJECTS ARE 7752 05:32:16,560 --> 05:32:18,480 AIDED IN COLLABORATION SUCH THE 7753 05:32:18,480 --> 05:32:20,000 PERSON COULD OBTAIN EMPLOYMENT 7754 05:32:20,000 --> 05:32:21,200 IS SOMETHING VERY INTERESTING TO 7755 05:32:21,200 --> 05:32:25,920 LOOK AT IN TERMS OF TRANSITION. 7756 05:32:25,920 --> 05:32:29,280 >> THIS IS A RANDOMIZED CONTROL 7757 05:32:29,280 --> 05:32:31,200 TRIAL OF PROJECT SEARCH PLUS ASD 7758 05:32:31,200 --> 05:32:41,440 SUPPORTS COMPARED TO WHAT? 7759 05:32:41,440 --> 05:32:44,120 >> IT'S NOT CLEAR TO ME WHAT THE 7760 05:32:44,120 --> 05:32:47,320 COMPARISON GROUP GOT. 7761 05:32:47,320 --> 05:32:54,040 DOES ANYONE KNOW? 7762 05:32:54,040 --> 05:32:55,280 AN OTHER COMMENTS ABOUT 7763 05:32:55,280 --> 05:32:55,920 ANYTHING? 7764 05:32:55,920 --> 05:32:58,560 >> IT SAYS AT THE VERY END. 7765 05:32:58,560 --> 05:33:01,360 THIS IS AN IMPROVEMENT OVER 7766 05:33:01,360 --> 05:33:02,040 COMMUNITY BASED TRAINING 7767 05:33:02,040 --> 05:33:02,320 PROGRAMS. 7768 05:33:02,320 --> 05:33:03,760 I DON'T KNOW IF THAT WAS THE 7769 05:33:03,760 --> 05:33:04,640 CONTROL BUT THAT'S WHAT THEY 7770 05:33:04,640 --> 05:33:18,800 WERE COMPARING TO. 7771 05:33:18,800 --> 05:33:19,680 >> IN THE MEANTIME I'LL STOP 7772 05:33:19,680 --> 05:33:20,720 SHARING AND WE CAN GO BACK TO 7773 05:33:20,720 --> 05:33:22,520 THE QUESTIONS NOW IF WE CAN GO 7774 05:33:22,520 --> 05:33:23,040 BACK TO THE ONES WE HAD 7775 05:33:23,040 --> 05:33:36,640 QUESTIONS ABOUT. 7776 05:33:36,640 --> 05:33:42,880 >> WE NEED THE NEXT SLIDE. 7777 05:33:42,880 --> 05:33:45,040 >> THE SECOND ONE HERE OR THE 7778 05:33:45,040 --> 05:33:47,840 SECOND SLIDE IS THE WEIGHT 7779 05:33:47,840 --> 05:33:48,240 MANAGEMENT STUDY. 7780 05:33:48,240 --> 05:33:50,280 >> LET'S MOVE ON TO THE NEXT ONE 7781 05:33:50,280 --> 05:33:51,960 BECAUSE I THINK WE PRETTY MUCH 7782 05:33:51,960 --> 05:33:52,560 DECIDED THAT ONE. 7783 05:33:52,560 --> 05:33:54,080 >> THAT'S DECIDED? 7784 05:33:54,080 --> 05:34:00,040 OKAY. 7785 05:34:00,040 --> 05:34:06,040 >> THERE'S ONE A SAMPLE SIZE ON 7786 05:34:06,040 --> 05:34:07,160 UNDOCUMENTED MEXICAN MOTHERS OF 7787 05:34:07,160 --> 05:34:08,520 CHILDREN WITH AUTISM NAVIGATING 7788 05:34:08,520 --> 05:34:10,000 THE HEALTH CARE SYSTEM. 7789 05:34:10,000 --> 05:34:11,960 I SPOKEN IN THE PAST ABOUT THE 7790 05:34:11,960 --> 05:34:13,400 IMPORTANCE OF NOT INCLUDING 7791 05:34:13,400 --> 05:34:14,760 ARTICLES OF SMALL SAMPLE SIZE 7792 05:34:14,760 --> 05:34:19,840 AND THIS VEESEEMS TO MEET THAT. 7793 05:34:19,840 --> 05:34:21,560 ANY OTHER QUESTIONS OR COMMENTS 7794 05:34:21,560 --> 05:34:22,360 ABOUT THIS PARTICULAR ARTICLE? 7795 05:34:22,360 --> 05:34:27,960 >> JOSH, I WOULD REITERATE MY 7796 05:34:27,960 --> 05:34:29,800 CONCERN ABOUT NOT EXAMINING 7797 05:34:29,800 --> 05:34:32,120 QUALITATIVE RESEARCH AS A 7798 05:34:32,120 --> 05:34:37,240 FOUNDATION TO BUILD MORE LARGER 7799 05:34:37,240 --> 05:34:40,000 SAMPLE SIZE RESEARCH UPON. 7800 05:34:40,000 --> 05:34:41,840 WE RECOGNIZE IT AS AN INITIAL 7801 05:34:41,840 --> 05:34:44,360 STEP BUT MARKING IT IN VIM OF 7802 05:34:44,360 --> 05:34:49,520 ADVANCES CAN BE PROBLEMATIC. 7803 05:34:49,520 --> 05:34:51,520 >> ANOTHER FACTOR IS YOU'RE 7804 05:34:51,520 --> 05:34:53,360 LIKELY GOING HAVE A SMALL SAMPLE 7805 05:34:53,360 --> 05:34:56,160 SIZE WITH THAT TYPE OF 7806 05:34:56,160 --> 05:34:56,480 POPULATION. 7807 05:34:56,480 --> 05:34:58,080 I'M NOT FAMILIAR WITH THE 7808 05:34:58,080 --> 05:35:00,760 RESEARCH SO I CAN'T SPEAK TO THE 7809 05:35:00,760 --> 05:35:02,000 CONTRIBUTIONS OF THE RESEARCH 7810 05:35:02,000 --> 05:35:03,000 ITSELF BUT I DO THINK WE HAVE TO 7811 05:35:03,000 --> 05:35:04,720 FACTOR IN THE FACT THAT IT'S 7812 05:35:04,720 --> 05:35:09,880 GOING TO BE A SMALL SAMPLE 7813 05:35:09,880 --> 05:35:12,560 BECAUSE I DON'T KNOW HOW MANY 7814 05:35:12,560 --> 05:35:14,280 ANOTHERS THAT FIT THAT CRITERIA 7815 05:35:14,280 --> 05:35:15,560 WOULD COME FORWARD IN RESEARCH. 7816 05:35:15,560 --> 05:35:32,960 >> VERY GOOD POINT. 7817 05:35:32,960 --> 05:35:34,120 >> GO BACK ONE. 7818 05:35:34,120 --> 05:35:35,720 >> GO FORWARD. 7819 05:35:35,720 --> 05:35:36,600 ONE MORE BACK. 7820 05:35:36,600 --> 05:35:38,040 IS THERE A POLL ASSOCIATED WITH 7821 05:35:38,040 --> 05:35:53,680 THAT ONE, SUSAN? 7822 05:35:53,680 --> 05:35:57,360 >> GIVEN THE COMMENTS YOU JUST 7823 05:35:57,360 --> 05:35:59,240 HEARD OF YOU THINK YOU THINK 7824 05:35:59,240 --> 05:36:01,320 THEY SHOULD BE INCLUDED IN THE 7825 05:36:01,320 --> 05:36:03,480 LIST OF NOMINATIONS. 7826 05:36:03,480 --> 05:36:07,720 NOT THAT YOU'RE VOTING FOR BUT 7827 05:36:07,720 --> 05:36:11,200 YOU THINK IT SHOULD BE ON THE 7828 05:36:11,200 --> 05:36:16,800 BALLOT. 7829 05:36:16,800 --> 05:36:17,960 TREATMENT CONDITION, CONTROL 7830 05:36:17,960 --> 05:36:23,640 CONDITION. 7831 05:36:23,640 --> 05:36:27,200 IN THE STUDY WHERE WE ARE 7832 05:36:27,200 --> 05:36:31,280 STUDYING THE AFFECTS OF THE 7833 05:36:31,280 --> 05:36:33,440 PROJECT SEARCH PLUS ASD SUPPORTS 7834 05:36:33,440 --> 05:36:38,760 THE CONTROL WAS INDEED TREATMENT 7835 05:36:38,760 --> 05:36:41,600 AS USUAL RECEIVED THE 7836 05:36:41,600 --> 05:36:42,360 MODIFICATIONS STIPULATED IN THE 7837 05:36:42,360 --> 05:36:47,320 IEP. 7838 05:36:47,320 --> 05:36:48,760 THEN SOME RECEIVED SOME 7839 05:36:48,760 --> 05:36:52,280 COMMUNITY BASED EMPLOYMENT BUT 7840 05:36:52,280 --> 05:36:55,840 THE CONTROL IS AN IDEA AND JUST 7841 05:36:55,840 --> 05:36:56,720 GIVING YOU THE INFORMATION. 7842 05:36:56,720 --> 05:36:59,560 DO WE HAVE THE RESULTS FROM THE 7843 05:36:59,560 --> 05:37:00,560 POLL ON QUESTION FIVE ON THIS 7844 05:37:00,560 --> 05:37:08,040 ARTICLE? 7845 05:37:08,040 --> 05:37:15,160 I WOULD BE INCLINED TO TAKE IT 7846 05:37:15,160 --> 05:37:15,360 OFF. 7847 05:37:15,360 --> 05:37:17,400 MOVING ON TO QUESTION 6. 7848 05:37:17,400 --> 05:37:29,160 LIFE SPAN ISSUES AND THERE WERE 7849 05:37:29,160 --> 05:37:38,080 AT LEAST TWO. 7850 05:37:38,080 --> 05:37:40,160 ONE IS ON ACCESS TO EDUCATION 7851 05:37:40,160 --> 05:37:43,080 AND THE FIRST WAS AN INFORMATION 7852 05:37:43,080 --> 05:37:49,040 GATHERING ACTIVITY AKIN TO I 7853 05:37:49,040 --> 05:37:52,000 GUESS A CALL FATIVE STUDY 7854 05:37:52,000 --> 05:37:53,240 DEFINING PRIORITIES TO GUIDING 7855 05:37:53,240 --> 05:37:54,160 RESEARCH TYPICALLY NOT INCLUDED 7856 05:37:54,160 --> 05:37:56,760 IN THOSE THINGS IN THE PAST AND 7857 05:37:56,760 --> 05:37:59,880 THE SECOND ONE IS ON EDUCATIONAL 7858 05:37:59,880 --> 05:38:03,200 HEALTH CARE SERVICES FOR 7859 05:38:03,200 --> 05:38:05,240 INDIVIDUALS WITH INTELLECTUAL 7860 05:38:05,240 --> 05:38:07,040 AND DEVELOPMENT DISABILITIES 7861 05:38:07,040 --> 05:38:08,160 WRIT LARGE THOUGH IT'S ABOUT 7862 05:38:08,160 --> 05:38:08,440 COVID-19. 7863 05:38:08,440 --> 05:38:09,760 ANY QUESTIONS OR COMMENTS ABOUT 7864 05:38:09,760 --> 05:38:11,160 THOSE TWO ARTICLES AND WHETHER 7865 05:38:11,160 --> 05:38:23,960 WE SHOULD INCLUDE THEM OR NOT? 7866 05:38:23,960 --> 05:38:26,240 WHILE THE POLLS ARE UP IF YOU 7867 05:38:26,240 --> 05:38:29,960 CAN STOP SHARING AND SHARE THE 7868 05:38:29,960 --> 05:38:32,480 ADOBE ACROBAT AGAIN? 7869 05:38:32,480 --> 05:38:33,640 PEOPLE CAN ANSWER THE POLL 7870 05:38:33,640 --> 05:38:34,360 QUESTION IF THEY FEEL LIKE THEY 7871 05:38:34,360 --> 05:38:53,080 WANT TO. 7872 05:38:53,080 --> 05:38:56,320 >> THERE'S A NUMBER OF TRENDS 7873 05:38:56,320 --> 05:38:58,880 AND SUPPLEMENTAL SECURITY AND 7874 05:38:58,880 --> 05:39:05,200 PAYMENTS TO ADULTS WITH AUTISM 7875 05:39:05,200 --> 05:39:08,560 AND THE ARTICLE ON GENDER AND 7876 05:39:08,560 --> 05:39:10,920 MINORITIES AND THERE'S A NEED WE 7877 05:39:10,920 --> 05:39:13,360 NEED TO KNOW MORE ABOUT. 7878 05:39:13,360 --> 05:39:15,360 THE COVID IMPACT ONE THOUGH WAS 7879 05:39:15,360 --> 05:39:17,160 INTERESTING BUT AGAIN DOESN'T 7880 05:39:17,160 --> 05:39:18,560 FOCUS ON AUTISM. 7881 05:39:18,560 --> 05:39:20,160 DEFINING POSITIVE OUTCOMES IN 7882 05:39:20,160 --> 05:39:23,880 MORE OR LESS COGNITIVELY ABLE 7883 05:39:23,880 --> 05:39:25,680 AUTISTIC ADULTS. 7884 05:39:25,680 --> 05:39:27,360 THE ADULT FOCUS WAS INTERESTING 7885 05:39:27,360 --> 05:39:29,760 AND TO ME SUGGESTED A POTENTIAL 7886 05:39:29,760 --> 05:39:30,800 TO POINT TO TREATMENT TARGETS 7887 05:39:30,800 --> 05:39:35,280 FOR FUNCTIONAL TREATMENTS. 7888 05:39:35,280 --> 05:39:40,440 QUALITATIVE STUDY AND PSYCH 7889 05:39:40,440 --> 05:39:43,640 METRIC TESTING OF SELF-EFFICACY 7890 05:39:43,640 --> 05:39:45,760 SCALE. 7891 05:39:45,760 --> 05:39:46,120 ANY COMMENTS. 7892 05:39:46,120 --> 05:40:00,040 JALYNN YOU WANTED TO COMMENT? 7893 05:40:00,040 --> 05:40:02,560 >> YOU HAVE TWO DIFFERENT AREAS 7894 05:40:02,560 --> 05:40:07,840 IN THE IT LITERATURE THAT CAME 7895 05:40:07,840 --> 05:40:11,200 OUT ABOUT ARTICLES AND 7896 05:40:11,200 --> 05:40:11,760 ADVANCEMENTS AND THEN THIS 7897 05:40:11,760 --> 05:40:14,760 LISTING HERE. 7898 05:40:14,760 --> 05:40:16,960 PERHAPS I DIDN'T SEE HOW THIS 7899 05:40:16,960 --> 05:40:26,840 MAY BE RELATED TO SOMETHING. 7900 05:40:26,840 --> 05:40:28,280 IT IS SOMETHING THAT MADISON 7901 05:40:28,280 --> 05:40:30,800 HOUSE HAS BEEN WORKING ON WITH 7902 05:40:30,800 --> 05:40:32,000 FIRST PLACE ARIZONA WATTS 7903 05:40:32,000 --> 05:40:34,040 COLLEGE AND THE MORE IS 7904 05:40:34,040 --> 05:40:36,840 INSTITUTE OF PUBLIC HEALTH IN 7905 05:40:36,840 --> 05:40:42,080 ARIZONA ABOUT HOUSING. 7906 05:40:42,080 --> 05:40:45,680 BECAUSE SERVICES THIS IS AN 7907 05:40:45,680 --> 05:40:47,320 ADULT AREA WHERE THERE'S FEW 7908 05:40:47,320 --> 05:40:56,320 SERVICES. 7909 05:40:56,320 --> 05:40:57,600 WHEN YOU START TO TALK ABOUT 7910 05:40:57,600 --> 05:41:02,320 THIS AND THIS IS ON THE OPENING 7911 05:41:02,320 --> 05:41:03,320 DOOR STUDY. 7912 05:41:03,320 --> 05:41:05,000 >> ARE YOU TALKING ABOUT ONE OF 7913 05:41:05,000 --> 05:41:06,520 THESE NOMINATIONS? 7914 05:41:06,520 --> 05:41:07,560 >> YES AND NO. 7915 05:41:07,560 --> 05:41:09,440 BECAUSE THIS WAS NOT NOMINATED 7916 05:41:09,440 --> 05:41:13,040 BUT I'M HAVING A QUESTION HOW 7917 05:41:13,040 --> 05:41:16,360 THINGS LIKE THIS CAN BE PUT INTO 7918 05:41:16,360 --> 05:41:19,240 SOMETHING OF THIS NATURE. 7919 05:41:19,240 --> 05:41:21,080 I THINK THIS WAS MY FAULT ON 7920 05:41:21,080 --> 05:41:23,840 THIS AND HAD NOT BEEN CLEAR TO 7921 05:41:23,840 --> 05:41:24,040 ME. 7922 05:41:24,040 --> 05:41:25,760 THERE'S A LOT OF RESEARCH IN 7923 05:41:25,760 --> 05:41:28,160 THIS AND IT'S MOVING SOMETHING 7924 05:41:28,160 --> 05:41:30,160 FORWARD BY LEAPS AND BOUNDS WITH 7925 05:41:30,160 --> 05:41:32,960 WHAT HAPPENS TO BE IN THIS 7926 05:41:32,960 --> 05:41:34,880 PUBLICATION. 7927 05:41:34,880 --> 05:41:39,360 >> YOU SHOULD FEEL FREE TO 7928 05:41:39,360 --> 05:41:43,360 NOMINATE A PUBLICATION FOR THE 7929 05:41:43,360 --> 05:41:48,080 YEAR IT WAS PUBLISHED AND NOT 7930 05:41:48,080 --> 05:41:50,440 CLEAR WHETHER THE PUBLICATION 7931 05:41:50,440 --> 05:41:52,640 YOU'RE TALKING ABOUT WHETHER WE 7932 05:41:52,640 --> 05:41:55,280 AS A GROUP ACCEPT IT BUT I DON'T 7933 05:41:55,280 --> 05:41:59,520 THINK WE PRECONCEIVED NOTIONS I 7934 05:41:59,520 --> 05:42:01,360 DON'T KNOW IF IT'S PUBLISHED WE 7935 05:42:01,360 --> 05:42:02,920 DON'T HAVE PRECONCEIVED NOTIONS 7936 05:42:02,920 --> 05:42:04,360 ABOUT IT. 7937 05:42:04,360 --> 05:42:07,040 YOU HEARD US DEBATING THE 7938 05:42:07,040 --> 05:42:08,840 INCLUSION NOT THE IMPORTANCE BUT 7939 05:42:08,840 --> 05:42:13,960 THE INCLUSION OF DIFFERENT KINDS 7940 05:42:13,960 --> 05:42:21,360 OF REVIEW SREVIEWS AND I'M DOING 7941 05:42:21,360 --> 05:42:24,120 INJUSTICE TO A LARGER DISCUSSION 7942 05:42:24,120 --> 05:42:25,600 IF IT BRINGS UP NEW AND 7943 05:42:25,600 --> 05:42:27,160 IMPORTANT IDEAS AND NOVEL 7944 05:42:27,160 --> 05:42:28,000 CONCLUSIONS WE MIGHT CONSIDER. 7945 05:42:28,000 --> 05:42:29,320 I DON'T THINK WE CAN CONSIDER IT 7946 05:42:29,320 --> 05:42:30,760 IN THE CONTEXT OF THIS 7947 05:42:30,760 --> 05:42:32,720 DISCUSSION UNLESS IT WAS ALREADY 7948 05:42:32,720 --> 05:42:33,160 NOMINATED. 7949 05:42:33,160 --> 05:42:33,560 >> ALL RIGHT. 7950 05:42:33,560 --> 05:42:35,400 I'M HOPING IT WILL OPEN UP THE 7951 05:42:35,400 --> 05:42:42,120 CONVERSATION FOR OVER NOMINATION 7952 05:42:42,120 --> 05:42:53,840 S 7953 05:42:53,840 --> 05:42:56,960 >> I WANTED TO TALK ABOUT THE 7954 05:42:56,960 --> 05:42:58,520 COMPARATIVE STUDY OF AUTISTIC 7955 05:42:58,520 --> 05:42:58,720 WOMEN. 7956 05:42:58,720 --> 05:43:01,600 IT HAD A SAMPLE SIZE OF 355 7957 05:43:01,600 --> 05:43:02,480 AUTISTIC WOMEN. 7958 05:43:02,480 --> 05:43:04,920 THE ORIGINAL SAMPLE SIZE IS WELL 7959 05:43:04,920 --> 05:43:07,160 OVER 1,000 PARTICIPANTS. 7960 05:43:07,160 --> 05:43:08,880 AND WHITTLED DOWN AND 50% OF 7961 05:43:08,880 --> 05:43:11,000 THAT NUMBER APPROXIMATELY WERE 7962 05:43:11,000 --> 05:43:12,960 NON-DISABLED PARENTS AND AGAIN 7963 05:43:12,960 --> 05:43:14,760 GOING BACK TO MY PREVIOUS 7964 05:43:14,760 --> 05:43:16,240 COMMENT ABOUT SERVICE DELIVERY. 7965 05:43:16,240 --> 05:43:18,000 THIS COULD GIVE US A GREAT BIT 7966 05:43:18,000 --> 05:43:21,200 OF INSIGHT AS TO WHERE AUTISTIC 7967 05:43:21,200 --> 05:43:22,560 MOTHERS MAY NEED EXTRA SUPPORT 7968 05:43:22,560 --> 05:43:27,240 OR WHERE THEY MAY ACTUALLY HAVE 7969 05:43:27,240 --> 05:43:45,880 A NEURODIVERSE IN PARENTING. 7970 05:43:45,880 --> 05:43:47,360 AND THE ONE IN REGARD TO SOCIAL 7971 05:43:47,360 --> 05:43:50,280 SECURITY PAYMENTS IF YOU GET THE 7972 05:43:50,280 --> 05:43:53,720 MAXIMUM AMOUNT OF MONEY UNDER 7973 05:43:53,720 --> 05:43:58,800 SSA YOU'RE STILL $2500 BELOW THE 7974 05:43:58,800 --> 05:44:02,480 FEDERAL POVERTY LINE AND 7975 05:44:02,480 --> 05:44:03,760 ANYTHING WE CAN DO TO DO LOOK AT 7976 05:44:03,760 --> 05:44:09,200 THAT IS AN ASSET FOR OUR 7977 05:44:09,200 --> 05:44:09,520 POPULATION. 7978 05:44:09,520 --> 05:44:13,720 >> I SEE TWO THAT ARE METHODS 7979 05:44:13,720 --> 05:44:16,400 FOCUSSED AND LET PEOPLE VOTE 7980 05:44:16,400 --> 05:44:18,000 BECAUSE I THINK I'M SUPER 7981 05:44:18,000 --> 05:44:19,240 EXCITED TO SEE WHAT COMES OF 7982 05:44:19,240 --> 05:44:30,040 THIS METHOD DOWN THE ROAD AND 7983 05:44:30,040 --> 05:44:32,520 THE CONCLUSIONS WERE THIS MAY 7984 05:44:32,520 --> 05:44:34,040 WORK WITH SOME MODIFICATIONS. 7985 05:44:34,040 --> 05:44:48,960 THIS IS A STUDY THAT TESTS THE 7986 05:44:48,960 --> 05:44:51,080 FEASIBILITY OF A METHOD. 7987 05:44:51,080 --> 05:44:55,200 AND THE OTHER THAT FITS IN THE 7988 05:44:55,200 --> 05:45:00,480 SAME IDEA AND THERE'S TESTING OF 7989 05:45:00,480 --> 05:45:09,560 THE MEASURE DEVELOPMENT AND I 7990 05:45:09,560 --> 05:45:10,480 THINK THIS IS GOING TO BE A 7991 05:45:10,480 --> 05:45:20,200 SUPER HELPFUL TOOL. 7992 05:45:20,200 --> 05:45:22,920 TO THE RESULTS OF THIS 7993 05:45:22,920 --> 05:45:23,520 PARTICULAR STUDY WITH HEALTH 7994 05:45:23,520 --> 05:45:24,480 CARE PROFESSIONALS DON'T REALLY 7995 05:45:24,480 --> 05:45:29,960 KNOW HOW TO TREAT ADULTS WITH 7996 05:45:29,960 --> 05:45:35,240 AUTISM AND A FEEL AND I FEEL WE 7997 05:45:35,240 --> 05:45:38,160 HAVE A GOOD HANDLE. 7998 05:45:38,160 --> 05:45:40,880 THOSE WERE THE TWO FROM QUESTION 7999 05:45:40,880 --> 05:45:43,760 SIX THE STUDIES I'M MOST 8000 05:45:43,760 --> 05:45:45,280 FAMILIAR WITH I'M LESS CONVINCED 8001 05:45:45,280 --> 05:45:45,560 BY. 8002 05:45:45,560 --> 05:45:46,720 >> THANK YOU, JULIE. 8003 05:45:46,720 --> 05:45:52,560 I APPRECIATE THE COMMENTS. 8004 05:45:52,560 --> 05:45:57,960 JUST NOTE THE POLL ARGUES 8005 05:45:57,960 --> 05:46:08,320 AGAINST THE BENEVITEZ. 8006 05:46:08,320 --> 05:46:11,960 WE'LL KEEP IT IN FOR NOW. 8007 05:46:11,960 --> 05:46:13,280 OKAY, LAST QUESTION. 8008 05:46:13,280 --> 05:46:18,560 WE DON'T HAVE SPECIFIC 8009 05:46:18,560 --> 05:46:21,080 APPLICATIONS TO CALL OUT BUT 8010 05:46:21,080 --> 05:46:22,200 INFRASTRUCTURE AND SURVEILLANCE. 8011 05:46:22,200 --> 05:46:23,520 THREES A COUPLE ARTICLES 8012 05:46:23,520 --> 05:46:24,760 INCLUDING ONE THAT CHARACTERIZE 8013 05:46:24,760 --> 05:46:27,480 THE DATA WE HEARD ABOUT TODAY. 8014 05:46:27,480 --> 05:46:30,160 THERE'S THE LATEST DATA ON 8015 05:46:30,160 --> 05:46:30,520 SURVEILLANCE. 8016 05:46:30,520 --> 05:46:34,680 THERE'S A COUPLE OTHER STUDIES 8017 05:46:34,680 --> 05:46:40,760 ABOUT A STATEWIDE REGISTRY FOR 8018 05:46:40,760 --> 05:46:41,760 EXAMPLE. 8019 05:46:41,760 --> 05:46:44,920 THIS POINTS TO HIGH COMORBID 8020 05:46:44,920 --> 05:46:48,000 MEDICAL AND PSYCHIATRIC 8021 05:46:48,000 --> 05:46:48,840 CONDITIONS. 8022 05:46:48,840 --> 05:46:50,400 IT'S WELL QUANTIFIED. 8023 05:46:50,400 --> 05:46:51,400 ANY COMMENTS ABOUT ANY OF THESE 8024 05:46:51,400 --> 05:46:56,520 SURVEILLANCE ONES? 8025 05:46:56,520 --> 05:47:01,360 >> I WANT TO CHAMPION THE DIETZ 8026 05:47:01,360 --> 05:47:03,200 WITH ADULTS WITH SPECTRUM 8027 05:47:03,200 --> 05:47:04,200 DISORDER. 8028 05:47:04,200 --> 05:47:06,040 IT'S A GOOD STUDY. 8029 05:47:06,040 --> 05:47:07,040 IT'S CRITICAL TO MY DISSERTATION 8030 05:47:07,040 --> 05:47:24,360 RIGHT NOW. 8031 05:47:24,360 --> 05:47:25,960 IF YOU'RE LOOKING AT THE 8032 05:47:25,960 --> 05:47:27,640 ADVOCACY TOOLS FOR PEOPLE OVER 8033 05:47:27,640 --> 05:47:31,040 18 IT'S WELL DONE. 8034 05:47:31,040 --> 05:47:34,960 I THINK WE'RE STILL MASSIVELY 8035 05:47:34,960 --> 05:47:35,840 MISSING A LOT OF PEOPLE BUT 8036 05:47:35,840 --> 05:47:37,200 SOMETHING TO WORK WITH. 8037 05:47:37,200 --> 05:47:42,280 >> I THINK THAT'S IT THEN. 8038 05:47:42,280 --> 05:47:45,480 YOU'VE HEARD ALL THE ITEMS 8039 05:47:45,480 --> 05:47:47,360 PEOPLE CARE TO DISCUSS. 8040 05:47:47,360 --> 05:47:48,400 JUNES, YOU CAN CLARIFY BUT WE'LL 8041 05:47:48,400 --> 05:47:53,880 BE SOINTHD E-MAILS -- SENDING 8042 05:47:53,880 --> 05:47:56,000 OUT E-MAILS FOR PEOPLE TO VOTE 8043 05:47:56,000 --> 05:47:57,560 WITH SOME ARTICLE ELIMINATED AND 8044 05:47:57,560 --> 05:47:59,960 THE OF THE OF THEM IN THERE. 8045 05:47:59,960 --> 05:48:02,520 I ASK YOU STRONGLY WORK TO TRY 8046 05:48:02,520 --> 05:48:05,240 TO SPREAD YOUR VOTES AROUND. 8047 05:48:05,240 --> 05:48:07,520 TO TRY TO VOTE FOR ONE TO THREE 8048 05:48:07,520 --> 05:48:09,720 IN EACH CATEGORY, IF YOU CAN. 8049 05:48:09,720 --> 05:48:11,360 IF YOU FEEL LIKE NO, THERE 8050 05:48:11,360 --> 05:48:13,320 AREN'T ANY IN ANY CATEGORY YOU 8051 05:48:13,320 --> 05:48:15,360 WANT TO VOTE FOR, BY ALL MEANS 8052 05:48:15,360 --> 05:48:17,600 I'M NOT GOING TO MAKE YOU BUT 8053 05:48:17,600 --> 05:48:19,360 WE'LL TRY TO MAKE SURE WE 8054 05:48:19,360 --> 05:48:25,360 HIGHLIGHT THE ADVANCES IN EACH 8055 05:48:25,360 --> 05:48:27,240 AREA WITH ONE OR TWO ARTICLES. 8056 05:48:27,240 --> 05:48:28,960 WE ENCOURAGE TO YOU SPREAD YOUR 8057 05:48:28,960 --> 05:48:30,200 VOTES AROUND. 8058 05:48:30,200 --> 05:48:31,400 SAM, DID YOU HAVE AN OVER 8059 05:48:31,400 --> 05:48:35,280 ARCHING QUESTION OR COMMENTS ON 8060 05:48:35,280 --> 05:48:39,240 THIS PROCESS? 8061 05:48:39,240 --> 05:48:43,720 >> SORRY, ALYCIA. 8062 05:48:43,720 --> 05:48:47,360 >> I SAW A COUPLE FROM DENA AND 8063 05:48:47,360 --> 05:48:49,200 TWO FROM ME AND I KNOW I 8064 05:48:49,200 --> 05:48:50,000 SUBMITTED 18. 8065 05:48:50,000 --> 05:48:51,680 I DON'T KNOW IF NAY WERE ALL 8066 05:48:51,680 --> 05:48:53,320 EXCLUDED OR WHAT HAPPENED. 8067 05:48:53,320 --> 05:48:59,240 >> MY GUESS IS THE OTHERS WERE 8068 05:48:59,240 --> 05:49:06,960 FOR 2021 8069 05:49:06,960 --> 05:49:08,800 >> THE SLIDE SAYS 2021. 8070 05:49:08,800 --> 05:49:11,480 >> THIS IS JUST TALKING ABOUT 8071 05:49:11,480 --> 05:49:13,360 THE NEXT VERSION BUT WITH THE 8072 05:49:13,360 --> 05:49:15,200 2020 WE'LL BE SENDING OUT A 8073 05:49:15,200 --> 05:49:15,560 BALLOT. 8074 05:49:15,560 --> 05:49:16,760 YOU'LL GET TO VOTE AND THEN OUR 8075 05:49:16,760 --> 05:49:20,320 TEAM WILL BE WORKING ON A DRAFT 8076 05:49:20,320 --> 05:49:22,600 MUCH THE FINAL DOCUMENT AND 8077 05:49:22,600 --> 05:49:24,560 WE'LL SHARE MORE IN APRIL. 8078 05:49:24,560 --> 05:49:27,200 FOR THE 2021 WE ALREADY SOLICIT 8079 05:49:27,200 --> 05:49:28,560 THE NOMINATIONS AND WE'LL TALK 8080 05:49:28,560 --> 05:49:30,520 ABOUT THEM AT THE APRIL MEETING 8081 05:49:30,520 --> 05:49:32,840 BASICALLY AND THEN PROBABLY DO 8082 05:49:32,840 --> 05:49:34,760 THE BALLOT AFTER THE APRIL 8083 05:49:34,760 --> 05:49:36,560 MEETING FOR THE 2021 TO CATCH 8084 05:49:36,560 --> 05:49:45,360 UP. 8085 05:49:45,360 --> 05:49:49,360 WHAT AND THE NOMINATIONS ARE NOT 8086 05:49:49,360 --> 05:49:50,480 COMPLETE FROM WHAT PEOPLE 8087 05:49:50,480 --> 05:49:51,040 SUBMITTED. 8088 05:49:51,040 --> 05:49:51,480 >> IT'S COMPLETE. 8089 05:49:51,480 --> 05:49:52,640 I BELIEVE IT'S COMPLETE. 8090 05:49:52,640 --> 05:49:56,320 WE'LL BE TALKING ABOUT IT NEXT 8091 05:49:56,320 --> 05:49:56,520 TIME. 8092 05:49:56,520 --> 05:49:58,000 WE DIDN'T WANT TO CONFUSE PEOPLE 8093 05:49:58,000 --> 05:49:59,480 AND DIDN'T HAVE TIME TO TALK 8094 05:49:59,480 --> 05:50:00,560 ABOUT THAT. 8095 05:50:00,560 --> 05:50:02,160 >> I SUBMITTED 18 ARTICLES AND 8096 05:50:02,160 --> 05:50:07,240 SEE TWO ON HERE. 8097 05:50:07,240 --> 05:50:09,200 THERE'S ONLY THREE. 8098 05:50:09,200 --> 05:50:13,360 >> ON THE 2021 DOCUMENT NOT THE 8099 05:50:13,360 --> 05:50:14,520 ONE JUST REVIEWED? 8100 05:50:14,520 --> 05:50:16,200 >> NO, 2021. 8101 05:50:16,200 --> 05:50:18,920 >> WE'RE ALSO COLLECTING FOR 8102 05:50:18,920 --> 05:50:19,240 2022. 8103 05:50:19,240 --> 05:50:20,200 IT'S GETTING CONFUSING. 8104 05:50:20,200 --> 05:50:22,760 WE'RE HOPING TO GET THE OTHER 8105 05:50:22,760 --> 05:50:24,480 DOCUMENTS DONE TO WORK ONE YEAR 8106 05:50:24,480 --> 05:50:26,120 AT A TIME. 8107 05:50:26,120 --> 05:50:28,840 >> CHECK WITH OARC STAFF. 8108 05:50:28,840 --> 05:50:30,960 LET'S MAKE SURE WE'RE NOT LOSING 8109 05:50:30,960 --> 05:50:31,960 ANY. 8110 05:50:31,960 --> 05:50:33,360 SORRY, JALEN, DID YOU HAVE 8111 05:50:33,360 --> 05:50:34,600 ANOTHER COMMENT TO MAKE? 8112 05:50:34,600 --> 05:50:36,560 >> THE PUBLICATION AUTO I'VE 8113 05:50:36,560 --> 05:50:37,920 BEEN TALKING ABOUT IS 20 AND I 8114 05:50:37,920 --> 05:50:38,960 WAS GETTING CONFUSED BETWEEN THE 8115 05:50:38,960 --> 05:50:40,440 YEARS AS WELL. 8116 05:50:40,440 --> 05:50:43,880 TRIGS TO FIGURE OUT AND SO IT 8117 05:50:43,880 --> 05:50:47,240 QUALIFIES TO END WITH THIS. 8118 05:50:47,240 --> 05:50:53,760 YES, JALYNN BUT UNFORTUNATELY 8119 05:50:53,760 --> 05:50:56,600 IT'S TOO LATE TO TAKE THE 8120 05:50:56,600 --> 05:50:56,920 NOMINATION. 8121 05:50:56,920 --> 05:51:00,160 >> I BELIEVE THE DOCUMENT YOU'RE 8122 05:51:00,160 --> 05:51:02,760 TALKING ABOUT IS A REPORT AND 8123 05:51:02,760 --> 05:51:06,040 USUALLY DON'T INCLUDE REPORTS 8124 05:51:06,040 --> 05:51:18,760 FROM AGENCIES AND ORGANIZATIONS. 8125 05:51:18,760 --> 05:51:21,480 >> I WOULD FEEL STRONGLY IT HAS 8126 05:51:21,480 --> 05:51:23,480 TO BE PEER REVIEWED. 8127 05:51:23,480 --> 05:51:23,960 IT DOESN'T MEAN YOUR 8128 05:51:23,960 --> 05:51:27,920 ORGANIZATION SUBMITS TO PUBLIC 8129 05:51:27,920 --> 05:51:29,960 IN A JOURNAL THAT WOULD BE 8130 05:51:29,960 --> 05:51:32,160 ACCEPTABLE BUT WOULD HAVE TO BE 8131 05:51:32,160 --> 05:51:33,160 PEER REVIEWED. 8132 05:51:33,160 --> 05:51:35,160 >> THERE'S OTHER PLACES TO 8133 05:51:35,160 --> 05:51:36,160 HIGHLIGHT THINGS AND THERE'S A 8134 05:51:36,160 --> 05:51:37,160 PLACE TO HIGHLIGHT DIFFERENT 8135 05:51:37,160 --> 05:51:38,360 THINGS THAT MAY NOT NECESSARILY 8136 05:51:38,360 --> 05:51:45,840 FIT IN THIS CATEGORY. 8137 05:51:45,840 --> 05:51:49,160 I ENCOURAGE TO BRING IT FORWARD 8138 05:51:49,160 --> 05:51:51,280 THAT MAY MERIT MORE FROM ANOTHER 8139 05:51:51,280 --> 05:51:52,520 COMMITTEE. 8140 05:51:52,520 --> 05:51:54,080 >> THERE'S RELEVANT THINGS. 8141 05:51:54,080 --> 05:51:59,240 THANK YOU VERY MUCH. 8142 05:51:59,240 --> 05:52:01,640 >> WHEN WE'RE TAKING ON THE NEW 8143 05:52:01,640 --> 05:52:04,120 TASK AND HAVE SO MANY NEW 8144 05:52:04,120 --> 05:52:05,600 MEMBERS TO THE IACC, IF WE CAN 8145 05:52:05,600 --> 05:52:08,720 SCHEDULE A BRIEF ORIENTATION, I 8146 05:52:08,720 --> 05:52:10,480 MEAN, THERE WAS CONFUSION AMONG 8147 05:52:10,480 --> 05:52:15,680 SOME OF THE MEMBERS. 8148 05:52:15,680 --> 05:52:19,840 I FEEL THERE'S SOME MEMBERS WHO 8149 05:52:19,840 --> 05:52:23,760 AREN'T SURE WHAT THEY'RE CHARGED 8150 05:52:23,760 --> 05:52:27,200 TO DO AND IF WE CAN SCHEDULE AN 8151 05:52:27,200 --> 05:52:29,760 OPTIONAL TIME FOR PEOPLE TO BE 8152 05:52:29,760 --> 05:52:32,160 ORIENTED THAT MIGHT BE HELPFUL. 8153 05:52:32,160 --> 05:52:32,840 >> SURE. 8154 05:52:32,840 --> 05:52:35,320 >> AND MAYBE DO THAT BEFORE 8155 05:52:35,320 --> 05:52:37,360 APRIL MEETING FOR THE 2021 8156 05:52:37,360 --> 05:52:38,600 SUMMARY OF ADVANCES SO PEOPLE 8157 05:52:38,600 --> 05:52:39,880 KNOW WHAT TO EXPECT. 8158 05:52:39,880 --> 05:52:42,600 >> I THINK WILL PARTICIPATE MORE 8159 05:52:42,600 --> 05:52:44,040 AND WILL REALLY UNDERSTAND WHAT 8160 05:52:44,040 --> 05:52:49,400 THEY'RE TASK IS SO THANK YOU. 8161 05:52:49,400 --> 05:52:50,360 >> OKAY. 8162 05:52:50,360 --> 05:52:52,000 NEXT UP IN THE FINAL ORDER OF 8163 05:52:52,000 --> 05:52:54,960 BUSINESS WE TRIED TO ALLOW 8164 05:52:54,960 --> 05:52:56,840 PEOPLE TO BRING UPDATES TO THE 8165 05:52:56,840 --> 05:52:59,080 COMMITTEE AND COMMUNITY THEY 8166 05:52:59,080 --> 05:52:59,280 HAVE. 8167 05:52:59,280 --> 05:53:03,280 WE REALLY ONLY HAVE TWO MINUTES 8168 05:53:03,280 --> 05:53:07,280 BEFORE WE'RE SUPPOSED TO 8169 05:53:07,280 --> 05:53:12,080 ADJOURN. 8170 05:53:12,080 --> 05:53:14,560 I'LL SEE IF THERE'S UPDATES TO 8171 05:53:14,560 --> 05:53:14,840 GIVE. 8172 05:53:14,840 --> 05:53:19,800 ALISON, YOUR HAND IS RAISED. 8173 05:53:19,800 --> 05:53:23,200 >> DIRECTING PEOPLE TO THE 8174 05:53:23,200 --> 05:53:24,160 WEBSITE AND WANTED TO MENTION 8175 05:53:24,160 --> 05:53:27,240 THE GRANT PROGRAM HAS OPENED AND 8176 05:53:27,240 --> 05:53:30,040 THE APPLICATIONS ARE DUE BY 8177 05:53:30,040 --> 05:53:33,320 FEBRUARY 25th FOR GRADUATE 8178 05:53:33,320 --> 05:53:40,760 STUDENTS, $10,000 STIPEND AND 8179 05:53:40,760 --> 05:53:43,160 PLEASE, THAT'S NOT MY DOG, I 8180 05:53:43,160 --> 05:53:43,840 HAVE A CAT. 8181 05:53:43,840 --> 05:53:45,200 WE HAD A STATE OF THE SCIENCE 8182 05:53:45,200 --> 05:53:48,080 MEETING WHERE WE LOOKED AT 8183 05:53:48,080 --> 05:53:54,000 LESSONS FROM SAA DEMONSTRATIONS. 8184 05:53:54,000 --> 05:53:57,680 IT'S AVAILABLE FOR FREE DOWNLOAD 8185 05:53:57,680 --> 05:54:01,960 AND ALL THE THINGS THAT WENT ON 8186 05:54:01,960 --> 05:54:02,680 AND DISCUSSIONS AND SOCIAL 8187 05:54:02,680 --> 05:54:04,080 POLICY RESEARCHERS. 8188 05:54:04,080 --> 05:54:05,960 IF YOU GO TO THE ROUND ROBIN 8189 05:54:05,960 --> 05:54:07,160 DOCUMENT YOU CAN DOWNLOAD THE 8190 05:54:07,160 --> 05:54:07,480 BOOK FOR FREE. 8191 05:54:07,480 --> 05:54:17,960 THANK YOU. 8192 05:54:17,960 --> 05:54:19,240 >> THERE'S A QUESTION IN THE 8193 05:54:19,240 --> 05:54:20,160 CHAT AND MAYBE WE'RE PROVIDING 8194 05:54:20,160 --> 05:54:21,560 IT AND THEY JUST DON'T KNOW. 8195 05:54:21,560 --> 05:54:24,160 THE QUESTIONS FROM LINDSAY, IS 8196 05:54:24,160 --> 05:54:29,960 THERE A WAY TO RECEIVE ACCEPT 8197 05:54:29,960 --> 05:54:31,480 THE SUMMARY OF ADVANCES IF WE'RE 8198 05:54:31,480 --> 05:54:35,240 NOT ALREADY DOING LET'S MAKE 8199 05:54:35,240 --> 05:54:35,720 SURE WE PROVIDE THAT. 8200 05:54:35,720 --> 05:54:39,240 >> IN THE PAST WE'VE BEEN ABLE 8201 05:54:39,240 --> 05:54:44,160 TO PROVIDE ZIP FILES TO PEOPLE A 8202 05:54:44,160 --> 05:54:49,160 LOT OF THIS IS JOURNALS. 8203 05:54:49,160 --> 05:54:53,960 >> MANY ON THE CALL DON'T HAVE 8204 05:54:53,960 --> 05:54:56,520 ACCESS TO THE PAYWALL SO LET'S 8205 05:54:56,520 --> 05:54:57,520 MAKE SURE THAT HAPPENS BEFORE 8206 05:54:57,520 --> 05:54:58,120 THE DISCUSSION. 8207 05:54:58,120 --> 05:55:02,880 THANK YOU FOR BRINGING THAT UP. 8208 05:55:02,880 --> 05:55:07,000 ALYCIA YOU GET THE LAST ROUND 8209 05:55:07,000 --> 05:55:07,280 ROBIN. 8210 05:55:07,280 --> 05:55:08,360 >> THANK YOU. 8211 05:55:08,360 --> 05:55:09,880 THE AUTISM SCIENCE DAY OF 8212 05:55:09,880 --> 05:55:11,040 LEARNING WILL BE HYBRID THIS 8213 05:55:11,040 --> 05:55:11,240 YEAR. 8214 05:55:11,240 --> 05:55:14,960 LAST YEAR WAS ALL VIRTUAL AND BE 8215 05:55:14,960 --> 05:55:16,520 MARCH 30. 8216 05:55:16,520 --> 05:55:17,840 SO BEFORE OUR NEXT IACC MEETING 8217 05:55:17,840 --> 05:55:22,360 WHICH IS WHY I WANTED TO MENTION 8218 05:55:22,360 --> 05:55:23,080 IT. 8219 05:55:23,080 --> 05:55:26,040 ACTUALLY ON THE DOCKET WILL BE A 8220 05:55:26,040 --> 05:55:35,240 10 MINUTE SUMMARY OF THE TALK 8221 05:55:35,240 --> 05:55:38,360 MATT MAENNER MADE AND WE'RE 8222 05:55:38,360 --> 05:55:41,760 BACK ON TRACK AFTER COVID 8223 05:55:41,760 --> 05:55:44,160 REVIEWING OUR NEW POST 8224 05:55:44,160 --> 05:55:52,120 UNDERGRADUATE MECHANISM PRE-DOCS 8225 05:55:52,120 --> 05:55:55,200 AND IT'S RESTRICTED TO 8226 05:55:55,200 --> 05:55:58,800 INDIVIDUALS FROM UNDERGRADUATES 8227 05:55:58,800 --> 05:56:00,920 FROM CERTAIN GROUPS AND THOSE 8228 05:56:00,920 --> 05:56:02,800 STUDYING RACIAL AND ETHNIC 8229 05:56:02,800 --> 05:56:04,080 DISPARITIES IN AUTISM. 8230 05:56:04,080 --> 05:56:08,760 >> ALSO, I WANTED TO ADD THE 8231 05:56:08,760 --> 05:56:10,160 NSAR COMMUNITY COLLABORATORS 8232 05:56:10,160 --> 05:56:11,760 REQUEST OUR HELP WANTED AD PAGE 8233 05:56:11,760 --> 05:56:17,000 AS WE'RE SET TO LAUNCH THURSDAY 8234 05:56:17,000 --> 05:56:18,000 THE 20th. 8235 05:56:18,000 --> 05:56:20,840 IF PEOPLE ARE LOOKING TO FIND 8236 05:56:20,840 --> 05:56:22,040 PARTICIPANTS IN RESEARCH OR 8237 05:56:22,040 --> 05:56:22,960 COLLABORATORS THEY CAN FIND THEM 8238 05:56:22,960 --> 05:56:24,640 ON THE ONE PAGE. 8239 05:56:24,640 --> 05:56:26,240 IT MAY TAKE US A WHILE TO 8240 05:56:26,240 --> 05:56:27,320 POPULATE BUT IT WILL BE 8241 05:56:27,320 --> 05:56:28,320 HAPPENING THIS WEEK. 8242 05:56:28,320 --> 05:56:28,920 THANK YOU. 8243 05:56:28,920 --> 05:56:30,440 >> THANK YOU. 8244 05:56:30,440 --> 05:56:32,280 I'LL POINT EVERYONE LISTENING TO 8245 05:56:32,280 --> 05:56:38,080 THE IACC WEBSITE WHERE THERE'S A 8246 05:56:38,080 --> 05:56:44,480 LONG DOCUMENT WITH LOTS OF 8247 05:56:44,480 --> 05:56:45,320 ANNOUNCEMENTS UNDER THIS 8248 05:56:45,320 --> 05:56:48,560 MEETING'S LINK. 8249 05:56:48,560 --> 05:56:49,440 THERE'S INTERESTING STUFF 8250 05:56:49,440 --> 05:56:51,400 GRANTS, DEADLINE, INFORMATION, 8251 05:56:51,400 --> 05:56:51,680 WEBSITES. 8252 05:56:51,680 --> 05:56:57,440 LOTS OF STUFF ON THERE. 8253 05:56:57,440 --> 05:57:05,720 NEXT UP WE WANT TIME TO THANK 8254 05:57:05,720 --> 05:57:16,560 THE STAFF AND OTHER FOLKS. 8255 05:57:16,560 --> 05:57:18,760 THIS IS A GREAT GROUP AND 8256 05:57:18,760 --> 05:57:20,160 THEY'VE DONE A LOT TO GET THIS 8257 05:57:20,160 --> 05:57:22,720 MEETING UP AND RUNNING AND TO 8258 05:57:22,720 --> 05:57:24,720 MAKE IT HAPPEN AS WELL AS OUR 8259 05:57:24,720 --> 05:57:25,520 CONTRACTORS WOULD HAVE BEEN 8260 05:57:25,520 --> 05:57:26,440 HELPING OUT WITH THE TECHNOLOGY. 8261 05:57:26,440 --> 05:57:32,080 I WANT TO THANK ALL OF THEM AND 8262 05:57:32,080 --> 05:57:35,440 THEY ARE NOT ONLY RESPONSIBLE 8263 05:57:35,440 --> 05:57:40,640 FOR PUTTING THE MEETING ON AND 8264 05:57:40,640 --> 05:57:41,520 TAKING THE ADVICE INTO ACTION 8265 05:57:41,520 --> 05:57:43,040 AND LOOK FOR IMPROVEMENTS ALONG 8266 05:57:43,040 --> 05:57:43,640 THE WAY. 8267 05:57:43,640 --> 05:57:45,600 THE NEXT MEETING APRIL 13 AND 8268 05:57:45,600 --> 05:57:45,880 14. 8269 05:57:45,880 --> 05:57:48,040 WE TRIED TO SPLIT TODAY'S UP IN 8270 05:57:48,040 --> 05:57:48,200 TWO. 8271 05:57:48,200 --> 05:57:51,240 WE COULDN'T BUT WE'LL DO THIS IN 8272 05:57:51,240 --> 05:57:53,920 TWO SEGMENTS NEXT TIME BECAUSE 8273 05:57:53,920 --> 05:57:56,280 IT'S SO MUCH EASIER AND LESS 8274 05:57:56,280 --> 05:57:56,840 EXHAUSTING. 8275 05:57:56,840 --> 05:57:58,400 I DON'T KNOW ABOUT YOU BUT I'M 8276 05:57:58,400 --> 05:58:00,280 PRETTY TIRED AT THE END OF THE 8277 05:58:00,280 --> 05:58:02,800 DAY AND ONE SPECIAL NOTE, I 8278 05:58:02,800 --> 05:58:05,280 APPRECIATE AS OTHERS HAVE SAID 8279 05:58:05,280 --> 05:58:06,520 THE PASSION AND BACK AND FORTH 8280 05:58:06,520 --> 05:58:08,760 ON A NUMBER OF ISSUES. 8281 05:58:08,760 --> 05:58:09,800 IT WON'T BE THE LAST WORD ON 8282 05:58:09,800 --> 05:58:12,120 THOSE ISSUES AND MORE BUT I 8283 05:58:12,120 --> 05:58:13,520 APPRECIATE THE RESPECT WE ALL 8284 05:58:13,520 --> 05:58:15,640 GAVE EACH OTHER AND THE 8285 05:58:15,640 --> 05:58:17,040 OPPORTUNITY TO HEAR ALL THESE 8286 05:58:17,040 --> 05:58:18,440 DIFFERENT VIEW POINTS AND WE 8287 05:58:18,440 --> 05:58:23,120 WILL GET TO KNOW EACH OTHER MORE 8288 05:58:23,120 --> 05:58:24,080 OVER TIME AND LEARN EVEN MORE 8289 05:58:24,080 --> 05:58:27,200 HOW TO LISTEN TO EACH OTHER AND 8290 05:58:27,200 --> 05:58:27,960 MAKE SURE DIFFERENT VIEW POINTS 8291 05:58:27,960 --> 05:58:29,840 ARE REPRESENTED. 8292 05:58:29,840 --> 05:58:31,400 THANK YOU ALL FOR YOUR 8293 05:58:31,400 --> 05:58:32,120 CONTRIBUTIONS AND TO THOSE 8294 05:58:32,120 --> 05:58:33,400 FOLLOWING THROUGH THE VIDEOCAST 8295 05:58:33,400 --> 05:58:37,960 ON THE WEB, THANK YOU FOR 8296 05:58:37,960 --> 05:58:38,600 JOINING US AS WELL AND THANK YOU 8297 05:58:38,600 --> 05:58:44,760 FOR THE WORK YOU DO ON BEHALF OF 8298 05:58:44,760 --> 05:58:48,360 COMMUNITIES AND INDIVIDUALS 8299 05:58:48,360 --> 05:58:49,760 AFFECTED BY AUTISM. 8300 05:58:49,760 --> 05:58:50,760 THANK YOU ALL. 8301 05:58:50,760 --> 05:58:51,000 >> THANK YOU, EVERYONE. 8302 05:58:51,000 --> 00:00:00,000 BYE, WE'LL BE IN TOUCH.