>> WELCOME, EVERYBODY, AGAIN, TO THE SECOND HALF OF THE FALL AUTISM COORDINATING COMMITTEE MEETING. WE HAVE ANOTHER FULL AFTERNOON. I APPRECIATE MEMBERS OF THE COMMITTEE FOR JOINING US AND WELCOME MEMBERS OF THE PUBLIC AND NIMH'ERS AND FEDS AND NON-FEDS ALIKE. I'LL TURN IT OVER TO SUSAN DANIELS. DR. DANIELS. >> WELCOME. WE'RE LOOKING FORWARD TO TODAY'S DISCUSSION AND APPRECIATE THE WONDERFUL INPUT THAT COMMITTEE MEMBERS SHARED WITH US YESTERDAY AS WE HAD OUR SESSION. FIRST TODAY IS AN UPDATE ON KEVIN AND AVONTE'S LAW, THE LAST COMMITTEE ASKED SO NOW WE HAVE A GREAT NEW UPDATE ON THAT. WE ALSO WILL HAVE A PUBLIC COMMENT SESSION AND SESSION ON MENTAL HEALTH. TOWARD THE END OF THE DAY WE HAVE TIME SET ASIDE FOR ROUND ROBIN AND WILL GIVE THE COMMITTEE A CHANCE TO WEIGH IN ON WHETHER WE PREFER TO GO BACK TO SOME DISCUSSIONS ABOUT THE STRATEGIC PLAN INSTEAD OF ROUND ROBIN, WE'LL SEE HOW WE'RE DOING TOWARD THE END OF THE DAY. AT THIS POINT I'M PLEASED TO INTRODUCE KRISTIE BRACKENS FROM U.S. DEPARTMENT OF JUSTICE AND JOY PALUSKA PRESENTING AN UPDATE ON WHAT DOJ AND NCMEC HAVE BEEN DOING. >> THANK YOU FOR THE OPPORTUNITY TO SPEAK TO THE COMMITTEE TODAY. I'M EXCITED TO SHARE WITH YOU ALL SOME THINGS WE'RE DOING OVER THE PAST COUPLE OF YEARS. SO NEXT SLIDE PLEASE. >> ARE WE RUNNING IT FROM HERE? I THINK SO. LET'S MAKE SURE THAT WE ARE. >> WHILE WE'RE DOING THAT AND GETTING THE SLIDE UP, THIS IS MY FIRST TIME SPEAKING TO THE SUBCOMMITTEE, I'M SURE YOU ARE AWARE OF HOW THE KEVIN AND AVONTE PROGRAM CAME ABOUT, WITH THE LAW, CONGRESS CREATED THE KEVIN AND AVONTE'S LAW IN RESPONSE TO THE TWO CHILDREN WITH AUTISM WHO WENT MISSING. IT'S NAMED AFTER THE TWO BOYS, AS YOU'RE AWARE, 9-YEAR-OLD KEVIN CURTIS WHO WANDERED FROM HOME INTO A RIVER AND DROWNED IN 2008 AND 14-YEAR-OLD AVONTE WHO WANDERED AWAY FROM SCHOOL AND GROUND IN NEW YORK'S EAST CITY RIVER IN 2014. AS A RESULT THE LAW WAS ENACTED IN 2018 SO FOR THE PAST COUPLE OF YEARS, WE'VE AWARDED GRANTS IN SUPPORT OF THAT LAW. AND SO WE IN -- >> IT LOOKS LIKE THE SLIDES DID CHANGE. WE'RE BACK IN CONTROL SO JUST SAY NEXT SLIDE WHEN YOU NEED THE NEXT ONE. >> I SEE THAT. THANK YOU. I APOLOGIZE. IT'S MY FAULT, TECHNICAL DIVERSITY KILT -- DIFFICULTIES, I WAS ON VACATION AND MISSED PREP. >> NO WORRIES. WELCOME BACK TO WORK. >> OKAY. NEXT SLIDE. NEXT SLIDE. SO WHEN WE LOOK AT THE HISTORY OF THE PROGRAMS, ENACTED IN 2018, IN HONOR OF THESE TWO BOYS, ALTHOUGH WE FOCUS ON THE CHILDREN WHO HAVE AUTISM WITH THE KEVIN AND AVONTE PROGRAM, IT DOES ALSO -- WE ALSO HAVE FUNDS AVAILABLE TO SUPPORT PROGRAMS FOR ADULTS THAT WANDER AS WELL. NEXT SLIDE. SO THERE ARE TWO OBJECTIVES WITH THE FUNDING. ONE OBJECTIVE IS THE PRO-ACTIVE PROGRAMMING, SO WE WANT TO BE ABLE TO GET INFORMATION IN THE HANDS OF PEOPLE SO THAT WE CAN PREVENT WHERE WE CAN THE INSTANCES OF WANDERING IN ADULTS AND IN CHILDREN THAT ARE PRONE TO WANDER AND WE ALSO WANT TO WORK WITH LAW ENFORCEMENT AND OTHER ENTITIES TO GET TRACKING DEVICES IN THE HANDS OF LAW ENFORCEMENT AND OTHERS THAT CAN ALSO AID IN THE SUCCESSFUL RECOVERY OF THOSE THAT WANDER. AND SO TO DO THAT AGAIN LIKE I WAS SAYING WE HAVE A GRANT PROGRAM, KEVIN AND AVANTE PROGRAM, ONE CATEGORY IS LOCATIVE TECHNOLOGY AND THE SECOND BEING THE PRO-ACTIVE PROGRAMMING, PREVENTION PROGRAMMING. NEXT SLIDE. SO, THIS SLIDE GIVES YOU AN OVERVIEW OF WHERE WE'RE AT AS OF RIGHT NOW WITH THE PROGRAM. WE MADE 26 AWARDS SINCE THE INCEPTION OF THE PROGRAM, IN OCTOBER OF -- EXCUSE ME, YEAH, OCTOBER 2019 MADE 13 AWARDS, TOTALING $1.8 MILLION. ONE OF THOSE INITIAL AWARDEES THAT YOU SEE NOTED HERE WAS THE WEST FARGO POLICE DEPARTMENT, AND WITH THE LOCATIVE TRACKING DEVICES THAT THEY RECEIVED FUNDING FOR THEY WERE ABLE TO SUCCESSFULLY RECOVER A CHILD. THAT'S ONE OF THE EARLY SUCCESSES THAT WE SAW IN THE PROGRAM. IN 2020 WE MADE 13 ADDITIONAL AWARDS, TOTALING ABOUT $1. 8 MILLION AS WELL. WHAT WE FOUND, ONE OF THE THINGS THAT WE DO WHEN WE MAKE THESE AWARDS IS TRACK THE PERFORMANCE OF OUR GRANTEES AND THE PEOPLE THAT WE'RE MAKING AWARDS TO, AND WHAT WE FOUND THAT WHEN IT COMES TO THE AVERAGE NUMBER OF HOURS ELAPSING BETWEEN REPORT OF WANDERING AND LOCATION OF A VULNERABLE INDIVIDUAL IN OUR GRANT PROGRAM, PER SE, THOSE WITH LOCATIVE TRACKING DEVICES WE FOUND IT WAS FIVE HOURS AVERAGE THAT THESE INDIVIDUALS WERE ABLE TO BE LOCATED, AND WITHOUT LOCATIVE TRACKING DEVICES IT WAS 72 HOURS. SO, THAT TELLS US THAT PUTTING THIS LOCATIVE TRACKING DEVICE IN THE HANDS OF THOSE WHO NEED IT HAS BEEN VERY SUCCESSFUL. YOU KNOW, LIKE I SAID, WE'VE HAD 26 -- WE HAVE 26 ACTIVE GRANTEES, SO I WANTED TO HIGHLIGHT A FEW SITES FOR YOU ALL UNDER BOTH CATEGORIES THAT ARE DOING SOME REALLY GOOD WORK. NEXT SLIDE. NEXT SLIDE. SO, THE FIRST SITE, THIS GRANTEER OF COURSE IS BEING AWARDED UNDER OUR PRO-ACTIVE AND PREVENTIVE PROGRAM, ALZHEIMER'S COMMITTEE CHAIR, THAT'S HOW ALSO WORK WITH SOME OLDER ADULT POPULATIONS. WHAT IS UNIQUE, IN THE PAST YEAR THEY SERVICED OVER 500 PATIENTS, HAVE BEEN ABLE TO GET THE ID BRACELETS ON THE PATIENTS, 126 ACTIVE, WITH A CASE OF WANDERING THEY HAD A 100% RECOVERY RATE. SO, AGAIN, GETTING THESE BRACELETS AND GETTING THIS INFORMATION OUT THERE IS REALLY WORKING. AS WE GO TO THE NEXT ONE I'D LIKE TO HIGHLIGHT FOR YOU, IT'S THE PROJECT PROGRAM UNITE, THE PARTNERSHIP WITH THE COUPLE SHERIFFS OFFICES IN FLORIDA, ENROLLING 2 2*8 PARTICIPANTS IN THE PAST 10 MONTHS, GOAL OF 300, THEY ARE ALMOST THERE. OF THE PEOPLE REPORTED MISSING IN THE LEE COUNTY SHERIFF'S OFFICE THE ONES THAT WERE PART OF THE UNITE MEMBERSHIP WERE FOUND SAFELY, WERE LOCATED SAFELY AND SO WE SEE THAT. IT'S A FIVE COUNTY AREA THERE THAT THEY ARE PARTNERING IN BUT WITH THE GRANT FUNDS THEY ARE ABLE TO ACTUALLY ENROLL PEOPLE IN THE PROGRAM AND ALTHOUGH WE DON'T WANT TO SEE FOLKS GO MISSING, BUT THE ONES THAT DID, WHO WERE PART OF THIS COLLABORATIVE THEY WERE ALL FOUND SAFELY AS WELL. ANOTHER PART OF OUR TRAINING -- THE COMPONENT WITH OUR PRO-ACTIVE PROGRAMMING IF YOU GO TO THE NEXT SLIDE IS EDUCATION COMPONENT. WE WANT TO MAKE SURE WE'RE PROVIDING EDUCATIONAL MATERIALS TO OUR FIRST RESPONDERS AND SO WHEN WE LOOK AT THE WORK THAT'S HAPPENING WITH THE MENTAL HEALTH OF AMERICA OF THE MID-SOUTH THEY HAVE CONDUCTED 15 TRAININGS, TRAINING 389 FIRST RESPONDERS. THEY ARE PROVIDING LIFE CARDS TO OVER 5,000 TENNESSEE RESIDENTS, AND CONTINUE TO DISTRIBUTE INFORMATION ACROSS THEIR 13 COUNTIES IN THAT REGION, IN THE MID-SOUTH REASON. REGION. THE TECHNOLOGY PIECE IS BEING SUCCESSFUL AS WELL AS GETTING EDUCATIONAL MATERIALS OUT THERE IN THE HANDS OF FOLKS THAT NEED IT. NEXT SLIDE PLEASE. WORKING WITH THE POLICE DEPARTMENTS, GETTING LOCATIVE TECHNOLOGY, WE HAVE THE BRACELETS, WE HAVE THE -- THEY ARE ABLE TO DO WITH THE GRANT FUNDS, AND SO JUST WITH THE BOSTON POLICE DEPARTMENT IS ONE EXAMPLE WHERE THEY CONTINUE TO ENROLL NEW CLIENTS IN THE PROGRAM, AND SO WE SEE IT WORKING THERE. NEXT SLIDE PLEASE. I WANTED TO HIGHLIGHT THE OSCEOLA SHERIFF'S OFFICE BECAUSE AGAIN YOU SEE WITH THESE GRANT FUNDS THAT THEY ARE SUCCESSFULLY FINDING PEOPLE. THEY HAVE 30 CLIENTS ENROLLED IN PROJECT LIFESAVER AND HAD TWO SUCCESSFUL FINDS. SOMETHING UNIQUE TO THEIR PROGRAM ALSO THAT THEY DO IS THAT THEY CHANGE OUT THE BATTERIES AND CHECK ON THE CLIENTS EVERY 60 DAYS, ONCE THEY GET THIS EQUIPMENT IN THEIR HANDS. AND THEN A FINAL ONE I WOULD HIGHLIGHT IS SUMTER COUNTY SHERIFF'S OFFICE, NEXT SLIDE PLEASE. AGAIN, WITH THE LOCATIVE SEC NOTHING, SINCE INCEPTION OF GRANT DISTRIBUTED 59 DEVICES, 9 PARTICIPANTS HAVE BEEN BROUGHT HOME, LOCATED AND BROUGHT BACK HOME SAFELY. AND SO EVEN WITH THE ZONING ALERTS, WHICH WE ALSO WANT TO BE PREVENTIVE, YOU KNOW, CAREGIVERS REPORTED GETTING ZONING ALERTS WHICH HELPED US AVOID A WANDERING INCIDENT. SO THIS IS SIX EXAMPLES OUT OF THE 26 ACTIVE SITES THAT WE HAVE THAT I THOUGHT REALLY SPEAK TO HOW WELL THE PROGRAM IS BEING IMPLEMENTED. SO WITH THAT, ANOTHER PART OF THE GRANT PROGRAM RECENTLY BY WAY OF UPDATE, WHEN THE KEVIN AND AVONTE'S LAW, A PART OF THAT LEGISLATION, NEXT SLIDE, REQUIRED US TO WORK ON THE DEVELOPMENT OF STANDARDS AND BEST PRACTICES AS IT RELATES TO USE OF TRACKING TECHNOLOGY. AND SO IN ORDER TO DO THAT, WE CONVENED A LOCATIVE TECHNOLOGY ROUNDTABLE EARLIER THIS YEAR, WITH THE 26 ACTIVE KEVIN AND AVONTE SITES. THE GOAL WAS REALLY TO HELP US IN DEVELOPING THESE STANDARDS. WE WANTED TO GET AN UNDERSTANDING FOR HOW OUR SITES, OUR GRANTEES, WHAT IS THEIR PROCESS FOR DETERMINING THE LOCATIVE TECHNOLOGY THAT THEY ARE USING, HOW DO THEY USE IT, HOW ARE THEY DEFINING STANDARDS, YOU KNOW, WHAT ARE SOME OF THE PROMISING PRACTICES THAT THEY ARE USING, EXISTING STANDARDS, HOW ARE THEY WORKING WITH THE COMMUNITIES, HOW ARE THEY WORKING TO TRAIN LAW ENFORCEMENT, CAREGIVERS, THINGS OF THAT NATURE ON THE LOCATIVE TRACKING TECHNOLOGY. AND THEN WE ALSO WANTED TO USE THIS AS AN OPPORTUNITY TO LOOK AT NON-INVASIVE EXAMPLES. YOU KNOW, THAT WE CAN ALSO WORK WITH THESE SITES ON. ANOTHER ASPECT OF THE ROUNDTABLE WAS ALSO LOOKING AT SOME OF THE PRO-ACTIVE PROGRAMMING AND UNDERSTANDING WHICH JOY WILL GET INTO WITH YOU ALL LATER DURING HER PRESENTATION TAIGS, UNDERSTANDING WANDERING, WHAT ARE THINGS WE COULD DO TO GET WORD OUT, CONSIDERATIONS WHEN IT COMES TO COMMUNICATING ABOUT THIS POPULATION, VICTIMIZATION, CREDIBILITY, IMPROVING INTERACTION BETWEEN LAW ENFORCEMENT, THE COMMUNITY, BUSINESS INDIVIDUALS, TO HELP PREVENT AND AS WELL AS IDENTIFY INDIVIDUAL WHO IS HAVE WANDERED. WE HAD A TWO DAY LOCATIVE TECHNOLOGY ROUNDTABLE FOCUSING ON THESE THINGS THAT I JUST MENTIONED WITHIN OUR SITE, AND SOME KEY TAKEAWAYS AS A RESULT OF THAT ROUNDTABLE WHICH WAS A VERY GOOD CONVERSATION WITH OUR SITES BUT SOME KEY TAKEAWAYS THAT MIGHT BE OF INTEREST TO YOUR COMMITTEE WAS, ONE, THERE NEEDS TO BE A CREATION OF FEDERAL AND NATIONAL STANDARDS FOR USE OF TRACKING TECHNOLOGY TO LOCATE MISSING INDIVIDUALS WHO WANDERED DUE TO THEIR CONDITIONS AND INCLUDING PERSPECTIVES OF EVERYONE AFFECTED BY THE STANDARDS, NOT ONLY LOOKING AT LAW ENFORCEMENT, FAMILY, SPECIAL EDUCATION TEACHERS, EXPERTS, MANUFACTURERS, MAKING SURE WE'RE INCLUDING VOICE OF PEOPLE WITH LIVED EXPERIENCES. ANOTHER KEY TAKEAWAY WAS THAT ANY STANDARDS CREATED FOR THE USE OF TRACKING TECHNOLOGY TO LOCATE MISSING INDIVIDUALS WHO WANDERED NEED TO BE FLEXIBLE AND ADAPTIVE, TO DIFFERENT DEPARTMENTS AND JURISDICTIONS. SO THERE CAN'T BE LIKE A ONE-SIZE-FITS-ALL APPROACH. SOMETHING THAT CAME OUT OF IT THAT I PERSONALLY HADN'T THOUGHT OF BUT IS CRITICAL IS THAT LOCATIVE TECHNOLOGY SHOULD BE USED AS A LAST RESORT, RIGHT? THERE ARE OTHER SORTS OF PREVENTION METHODS THAT SHOULD BE UTILIZED FIRST, AND MAKING SURE THAT AS WE DEVELOP STANDARDS THAT WE'RE INCLUDING THOSE OTHER METHODS FIRST AND MAKING SURE WE'RE GETTING THE WORD OUT ABOUT THOSE OTHER METHODS FIRST. DURING THE ROUNDTABLE DISCUSSION, THERE ARE EXAMPLES PROVIDED LIKE PLACING A STOP SIGN ON THE FRONT DOOR, OR CHANGING THE HEIGHT OF WHERE YOU PLACE YOUR DOOR LOCK. WE ALSO -- ANOTHER KEY TAKEAWAY WAS THAT LOOKING AT THE VARIOUS CAUSES OF WANDERING AND, YOU KNOW, UNDERSTANDING THAT EVERY INDIVIDUAL HAS A UNIQUE PATTERN OF BEHAVIOR, AND SO IT CAN BE DIFFICULT TO GENERALIZE ACROSS THIS VERY LARGE POPULATION, AND SO BEING CONSCIOUS OF THAT AS WE DEVELOP STANDARDS. AND THEN FINALLY, THE FINAL TAKEAWAY, KEY TAKEAWAY, WAS LOOKING AT TRAINING FOR OFFICERS, FIRST RESPONDERS, 911 DISPATCHERS, YOU KNOW, FOCUSED ON IDENTIFYING KEY CHARACTERISTICS AND BEHAVIORS THAT ARE ASSOCIATED WITH THIS POPULATION OF FOLKS AND MAKING SURE THAT WE'RE ABLE TO DIRECT FOLKS TO THE APPROPRIATE SERVICES. SO, THAT WAS OUR FOCUS AT THE TIME FOR LOCATIVE TECHNOLOGY ROUNDTABLE. THE WAY WE CONTINUE TO WORK WITH THE THE SITES IS PROVIDING TECHNICAL ASSISTANCE, WE HAVE QUARTERLY CALLS WITH GRANTEE, BROUGHT THEM TOGETHER FOR LOCATIVE TECHNOLOGY MEETING THAT I JUST MENTIONED. BUT WE'RE SUPPORTED THROUGH TTA THROUGH ITP, THEY SERVICE DIRECT TRAINING AND TECHNICAL ASSISTANCE PROVIDER FOR THE SITES, NCMEC IS ALSO A PARTNER AND THE ARC ARE ALSO PARTNERS. WHAT NCMEC AND ARC BRING IS RESOURCES AND SUBJECT MATTER EXPERTISE TO WORK WITH THE SITES AS WE HELP THEM DEVELOP THESE COMPREHENSIVE PLANS AROUND USING THIS EQUIPMENT. OUR GOAL IS NOT JUST TO PUT LOCATIVE TECHNOLOGY IN YOUR HANDS AND NOT HAVE THE SITE HAVE A PLAN FOR HOW THEY ARE GOING TO USE THAT EQUIPMENT AND BE PRO-ACTIVE WHEN IT COMES TO SPREADING THE WORD ABOUT THAT EQUIPMENT, HOW THEY ARE GOING TO WORK WITH ENGAGING THEIR PARTNERS. SO WE CONTINUE TO ENGAGE WITH OUR TTA PARTNERS AROUND THIS ISSUE AND SUPPORTING OUR SITE. ONE OF OUR THINGS THAT HAVE ALSO -- THROUGH ITP AS PART OF THE TTA IS A HOME SAFE. NEXT SLIDE PLEASE. HOME SAFE PAGE ON THE ITP WEBSITE. WHEN YOU GO TO THE HOME SAFE PAGE, I ENCOURAGE YOU TO TAKE A LOOK, YOU'LL FIND INFORMATION ABOUT THE KEVIN AND AVONTE SITES, ANY RESOURCES THAT WE HAVE AS FAR AS TRAINING AND TECHNICAL ASSISTANCE, WE HAVE A LIBRARY THAT CONTAINS WEBINARS, WORKSHOPS, TOOLS, OTHER TOOLS, PUBLICATIONS, ARTICLES. THROUGH OUR KEVIN AND AVONTE SITE SPECIFICALLY HAVE A PEER SHARING, SECURE ONLINE PEER SHARING COMMUNITY, OUR HOME SAFE CONNECT, THAT OUR GRANTEES ARE ABLE TO USE TO TALK AMONGST THEMSELVES. ONE OF THE THINGS WE TOOK FROM THE LISTENING SESSION THAT WE HAD ON THE TECHNOLOGY THE OPPORTUNITY TO TALK AMONGST THEMSELVES AND SHARE SOME CHALLENGES THAT THEY WERE FACING IN IMPLEMENTING GRANT AND SOME OF THEIR SUCCESSES. WE RECENTLY HAD A WEBINAR ON THE RESOURCES THAT NCMEC HAS. I THINK JOY IS GOING OVER THAT SO I WON'T GET INTO THAT. THOSE e-LEARNING OPPORTUNITIES THAT WE HAVE FOR THE KEVIN AND AVONTE SITES WILL ALSO BE PLACED ON THE HOME SAFE WEBSITE SO THAT ANYONE CAN TAKE A LOOK AT THOSE AND GET THE SAME INFORMATION WE PROVIDE AT OUR SITES. WE'RE ALSO WORKING, ONCE - COVID IMPACTED OUR ABILITY TO TRAVEL AND SUPPORT TRAVEL BUT WE'RE COMMITTED TO CONNECT THEM ON PEER-TO-PEER LEARNING OPPORTUNITIES TO SEE THE BEST PRACTICES THAT OTHER DEPARTMENTS MAY BE DOING OR OTHER AGENCIES MAY BE DOING THAT ARE WORKING THAT MIGHT HELP THEM AS THEY IMPLEMENT THEIR PROGRAM BACK AT HOME. I SEE I'M RUNNING OUT OF TIME. I DON'T WANT TO GET INTO JOY'S TIME SO I'LL FINISH UP. AS WE THINK ABOUT FISCAL YEAR 21 AND BEYOND FOR THE KEVIN AND AVONTE PROGRAM WE PLAN TO MAKE 17 NEW AWARDS THIS YEAR. WE RECEIVED SOME ADDITIONAL FUNDING THIS YEAR SO WE'RE ABLE TO MAKE MORE AWARDS THIS YEAR. SO WE'RE GOING TO BE MAKING $2.3 MILLION IN NEW AWARDS. WE'RE ALSO PLANNING A BIGGER STAKEHOLDER WORKSHOP IN SPRING 2022. THAT WORKSHOP WILL BUILD ON THE LOCATIVE TECHNOLOGY ROUNDTABLE THAT WE JUST HAD SO WE CAN CONTINUE TO WORK ON THE DEVELOPMENT OF THOSE STANDARDS. AND THEN AS FAR AS THE KEVIN AND AVONTE PROGRAM ITSELF, AS WE THINK ABOUT WHAT IT'S GOING TO LOOK LIKE GOING FORWARD, WE'RE IN THE PROCESS OF DEVELOPING SOLICITATION FOR NEXT YEAR TO SOLICIT, YOU KNOW, FOR MORE GRANTEES TO BE ABLE TO SUPPORT THROUGH THIS PROGRAM. ONE OF THE THINGS I'D LIKE TO DO WITH THE PROGRAM IS TO DEVELOP A PREVENTION TOOLKIT. ONE OF THE THINGS THAT CAME OUT OF THE LOCATIVE TECHNOLOGY IS THAT A ROUNDTABLE, THAT WE TEND TO ALWAYS GO TO LOCATIVE TECHNOLOGY AND WHAT ARE SOME OTHER THINGS THAT WE CAN BE PROVIDING TO THE KEVIN AND AVONTE SITES, TO THE FIELD, THAT PREVENT -- THAT AID IN PREVENTION AS WELL SO WE'RE GOING TO BE WORKING WITH ITP TO DEVELOP A TOOL KIT, INHANSING FOCUS ON PUBLIC EDUCATION AND AWARENESS, AND BEYOND, AND THEN ALSO THE FINAL THING THAT WE'LL BE DOING WITH THE KEVIN AND AVONTE PROGRAM, PROPOSING TO DO WITH THE PROGRAM THAT CAME AS A RESULT OF THE WEBINAR WITH THE NCMEC RESOURCES IS TO LOOK AT HOW WE CAN BETTER SUPPORT THIS POPULATION WHEN IT COMES TO KIDS AND THEIR ONLINE WHO ARE BEING EXPLOITED ONLINE BECAUSE THAT'S NOT SOMETHING WE HAD REALLY ADDRESSED BEFORE WITH THE KEVIN AND AVONTE SITE. WHAT ARE RESOURCES AND THINGS WE CAN DO TO BE MORE SUPPORTIVE IN THIS SPECIFIC AREA, WHERE THESE KIDS ARE BEING -- THEY ARE MORE PRONE TO BE EXPLOITED ONLINE SO HOW ARE WE DEALING WITH THAT. THAT'S IT AS FAR AS THE UPDATE ON THE KEVIN AND AVONTE PROGRAM. I HOPE THE INFORMATION WAS HELPFUL. I WELCOME ANY QUESTIONS AT THE END. THANK YOU. >> NOW I'D LIKE TO WELCOME JOY PALUSKA TO JOIN US. >> THANK YOU, I'M HONORED TO BE HERE. I'M JOY PALUSKA, I WORK AT THE NATIONAL CENTER FOR MISSING AND EXPLOITED CHILDREN. THERE'S THREE AREAS I SUPPORT. WE GO BY THE ACRONYM SO I'LL JUST SAY NCMEC WHEN I SPEAK. I SUPPORT DISASTER PREPAREDNESS AND RESPONSE, OUR OUTREACH TO CHILDREN OF COLOR AND NATIVE AMERICAN AND INDIGENOUS COMMUNITIES AND AUTISM SPECTRUM. A LOT OF OR WORK INTERSECTS IN DIFFERENT AREAS, MY CONTACT INFORMATION AFTER TODAY, IF YOU YOU WANT TO STAY IN TOUCH OR HAVE QUESTIONS, BUT GRATEFUL FOR THE OPPORTUNITY TO BE HERE WITH THE COMMITTEE. I WANTED TO ALSO SAY WHEN I FIRST STARTED AT NCMEC A COUPLE YEARS AGO I DID A COLD E-MAIL TO DR. DANIELS AND SAID, HEY, I'M JOY, I WORK AT NCMEC, AND SHE'S BEEN SUPER RESPONSIVE AND HELPFUL TO ME AS I'VE GROWN AND LEARNED ABOUT THESE ISSUES IN TERMS OF HOW WE CAN BEST SUPPORT CHILDREN ON THE AUTISM SPECTRUM. I WANT TO GIVE A WARM THANK YOU TO DR. DANIELS AND KRISTIE, ALSO STRONG SUPPORT TO NCMEC THROUGH THE GRANTS WE'RE WORKING ON. WITH THAT, LET ME ADVANCE MY SLIDE. SO TODAY I'M GOING TO TALK THROUGH THE MISSION OF NCMEC AND OUR HISTORY VERY QUICKLY. SOME OF THE DATA THAT WE SEE WITH MISSING CHILDREN AND RESOURCES THAT WE HAVE ARE RESOURCES FOR REDUCING CHILD SEXUAL EXPLOITATION AND PREVENTING FUTURE VICTIMIZATION. SORRY. NOT SURE IF MY VIDEO IS ON. AT ANY RATE, OUR MISSION HERE AT THE CENTER IS TO FIND MISSING CHILDREN, REDUCE CHILD SEXUAL EXPLOITATION, PREVENT FUTURE VICTIMIZATION, NON-PROFIT FOUNDED BY JOHN AND REVE WALSH, FOLKS ON THE CALL MAY REMEMBER THEIR SON ADAM WENT MISSING IN THE EARLY '80s AND HE WAS LATER FOUND MURDERED AND THEY REALLY HAVE TAKEN THE WORST TRAGEDY THAT COULD HAPPEN TO A FAMILY AND TRANSFORMED THE LANDSCAPE IN TERMS OF HOW WE SEARCH FOR MISSING CHILDREN AND SUPPORT MISSING AND EXPLOITED CHILDREN. IN MY PRESENTATION I'LL TALK ABOUT DIFFERENT PROGRAMS THAT HAVE THE NAME ADAM. WHEN I MAKE THOSE REFERENCES, WE'RE REFERRING TO ADAM WALSH, I WANTED TO ACKNOWLEDGE THAT. SO IN TERMS OF WHERE I WORK, I'M IN THE MISSING CHILDREN DIVISION, SO EARLIER THIS YEAR SOME OF OUR COLLEAGUES PUT TOGETHER A REPORT ON WHAT WE SEE IN TERMS OF MISSING CHILDREN ON THE AUTISM SPECTRUM. SOME OF THE IMPORTANT THINGS THAT I JUST WANTED TO PULL OUT FROM THE REPORT IS ON OUR WEBSITE AND AVAILABLE AND I'M SURE DR. DANIELS AS WELL WITH THE COMMITTEE, ONE OF THE BIG DATA POINTS THAT WE HAVE SEEN NOW AND HISTORICALLY IS THE DROWN DEATHS OF OUR CHILDREN, I'M JUST TALKING ABOUT CHILDREN ON THE AUTISM SPECTRUM IN ALL OF THIS DATA, SO WHAT WE HAVE DONE IN TERMS OF OUR OWN OUTREACH AND AWARENESS AND WE TRAIN LAW ENFORCEMENT, THAT'S A BIG THING WE DO AS AN ORGANIZATION, WE REALLY FOCUS ON THAT DATA AND IT IMPACTS THE SEARCH PROTOCOLS THAT WE PUT TOGETHER FOR LAW ENFORCEMENT AND ALSO OUR TRAINING, SO WE'RE ALWAYS SAYING -- ONE THING TO SEARCH WATER, EVEN IF WE ASKED THE FAMILY IS THE CHILD IS ATTRACTED TO WATER, MAYBE THEY DON'T KNOW YET, RIGHT? WE ALWAYS ARE ENCOURAGING OUR LAW ENFORCEMENT PARTNERS TO SEARCH WATER AND NOW NOT JUST TO SEARCH WATER BUT TO HAVE SOMEONE STAY AT THAT LOCATION SO WE CAN PREVENT THESE DROWNING DEATHS THAT WE SEE WITH OUR KIDDOS. AGAIN, DATA WE HAVE COLLECTED, WE HAD A LITTLE OVER 1500 CHILDREN ON THE AUTISM SPECTRUM REPORTED TO US DURING THAT TEN-YEAR PERIOD, WE ALWAYS TALK ABOUT WITH OUR DATA THAT NOT EVERYONE REPORTS THROUGH THE NATIONAL CENTER. THERE ARE CERTAIN INSTANCES WHERE THERE'S A REQUIREMENT TO REPORT. A COUPLE YEARS AGO A LAW WAS PASSED TO MANDATE CHILD WELFARE WORKERS, ANY KIND OF STATE CARE, IF THE CHILD GOES MISSING THEY ARE MANDATED TO REPORT TO NCMEC. UNFORTUNATELY, WE STILL DON'T HAVE ALL OF THOSE REPORTS THAT ARE COMING IN. WE'RE WORKING ON EDUCATING OUR PARTNERS IN THIS SPACE, WITHOUT THAT MANDATED REPORTING, SO, AGAIN, THERE MAY BE MANY MORE CHILDREN. WE'RE JUST DEALING WITH THE DATA THAT WE HAVE HERE AT THE CENTER. SO THE OTHER KIND OF DATA THAT WE NOTICED AS AN ORGANIZATION IS JUST THIS, WHAT WE SEE FOR CHILDREN MISSING IN THE SUMMER MONTHS. IN JANUARY, DECEMBER, IT'S AROUND 6%, THERE'S THIS SIGNIFICANT SPIKE IN THE SUMMER PERIODS. WHAT I REALLY WANT TO ALWAYS DRIVE HOME WITH FOLKS IS WE HAVE A 98% RECOVERY RATE, FOR THESE CASES. THAT'S HUGE, RIGHT? AND SO WE'RE JUST REALLY TRYING TO ENCOURAGE BOTH FAMILIES AND OUR LAW ENFORCEMENT PARTNERS TO REPORT THE CHILD TO OUR ORGANIZATION SO THAT OUR RESOURCES CAN BE UTILIZED. I'LL GET INTO THOSE NEXT. HOW DOES NCMEC HELP? WHEN A CALL COMES IN TO OUR ORGANIZATION THROUGH OUR CALL CENTER, WHICH IS 24/7 WE TAKE CALLS FROM LAW ENFORCEMENT OR FROM THE GUARDIAN, WE ALSO WILL TAKE THEN FROM OTHER FOLKS, DIFFERENT SUPPORT DEPENDING WHETHER IT'S LAW ENFORCEMENT OR THE PARENT OR GUARDIAN, RIGHT? SO WE ARE GOING TO THEN CONNECT THAT CASE, THAT CHILD'S CASE WITH A CASE MANAGER AND THEY ARE GOING TO DO A VARIETY OF THINGS, ONE IS TO CREATE AND DISSEMINATE POSTERS, WHICH I'LL TALK ABOUT IN A MOMENT, CREATES LEADS FOR LAW ENFORCEMENT THROUGH RESOURCES AT OUR ORGANIZATION, PROVIDE REFERRALS TO OUR FAMILY ADVOCACY SERVICES WHICH I'LL TOUCH ON ALSO A LITTLE BIT IN TERMS OF WHAT WE HAVE AVAILABLE TO FOLKS WHO ARE EXPERIENCING MISSING ARE EXPLOITED CHILD, COORDINATE RESOURCES WE HAVE THROUGH IF NECESSARY OUR TEAM ADAM CONSULTANTS, WE'LL TALK ABOUT THOSE FOLKS IN A SECOND. ALSO WE HAVE LOTS OF FEDERAL LIAISONS, IN A NON-COVID ENVIRONMENT EVERYONE SAT TOGETHER IN THE SHARED SPACE SO WE HAVE OUR FEDERAL PARTNERS SITTING WITH US AND SHARING INFORMATION, NOW WE'RE ALL AT HOME, FOR MOST OF THE TIME, DOING OUR WORK FROM THOSE SPACES. BUT WE HAVE LONGSTANDING RELATIONSHIPS AND CONNECTIONS AND CAN HELP LOCAL LAW ENFORCEMENT WHICH THERE'S ABOUT 19,000 LAW ENFORCEMENT ORGANIZATIONS IN THE U.S. AND MOST HAVE LESS THAN 50 ON STAFF. SO WE HAVE THIS INCREDIBLE AMOUNT OF STAFF WHO ARE AVAILABLE TO PROVIDE THE TECHNICAL SUPPORT TO LAW ENFORCEMENT AND CAN REALLY ASSIST. SO I MENTIONED OUR TEAM ADAM CONSULTANTS, THESE ARE SOME FOLKS, MOSTLY RETIRED LAW ENFORCEMENT, WE DO HAVE SOME OTHER FOLKS WHO HAVE BEEN ADDING TO TEAM ADAM CONSULTANT TEAM, FORENSIC FOLKS, ODENTOLOGISTS, THEY CAN DEPLOY ON-SITE TO A CRITICAL MISSING CHILD CASE AND PROVIDE THEIR PARTICULAR EXPERTISE, SO WE HAVE SOME FOLKS WHO HAVE SEARCH AND RESCUE EXPERTISE, THEY ARE INCREDIBLE INDIVIDUALS WHO CAN DEPLOY ON SITE AND HELP LOCAL LAW ENFORCEMENT IN THAT SEARCH FOR THE MISSING CHILD, RIGHT? AND WE ALSO HAVE FOLKS WHO CAN PROVIDE LONG-TERM CASE ASSISTANCE, MAYBE -- I DIDN'T MENTION, BUT IT'S ON THE SITE, FOLKS LOOKING AT THESE LONG-TERM MISSING CASES AND CAN GO IN AND HELP LAW ENFORCEMENT DO SOME ORGANIZATION AND ANALYSIS. THERE'S ALL KINDS OF NEW RESOURCES THAT ARE NOW AVAILABLE THROUGH DNA AND FORENSICS THAT WERE NOT AVAILABLE, YOU KNOW, JUST IN THE RECENT HISTORY SO WE CAN APPLY THOSE NCMEC RESOURCES TO CASES SO JUST AN INCREDIBLE RESOURCE THAT WE HAVE. WE ALSO HAVE OUR POSTER DISTRIBUTION, YOU CAN SEE 200 PARTNERS, YOU MAY SEE POSTERS IN WALMART, THEY ARE A HUGE PARTNER. I WANT TO SAY BEFORE I WORKED FOR NCMEC I WALKED BY THESE POSTERS, I WORKED FOR THE FEDERAL GOVERNMENT, I WALKED BY THEM EVERY DAY IN THE CAFETERIA. AND I HAD A FRIEND THAT WORKED AT NCMEC, AND I WAS JUST THERE, RIGHT? WORKING IN THE MISSING CHILDREN DIVISION I STARTED TO LEARN HOW POSTERS ACTUALLY RECOVER CHILDREN. THE STORY THAT STAYED WITH ME BECAUSE IT'S FROM WHEN I FIRST STARTED, A CHILD WAS MISSING IN NEW YORK, MISSING IN A SUBWAY. WE DEPLOYED A TEAM ADAM CONSULTANT, THEY POSTERED THE SUBWAY AND GOT THAT INFORMATION OUT THERE SO THAT THE PUBLIC COULD ASSIST IN THE SEARCH. WE HAD AN INDIVIDUAL CALL OUR CALL CENTER AND THEY SAID, I'M LOOKING AT THIS POSTER OF THIS CHILD, THE CALLER WAS SAYING I'M LOOKING AT A POSTER, AND I'M HOLDING MY HAND OF THE CHILD. WHAT SHOULD I DO? SO, THERE'S JUST DOZENS OF STORIES. WE GET ALL THOSE AT THE MISSING CHILDREN DIVISION. WE ALWAYS HEAR ABOUT THE RECOVERIES OF OUR KIDDOS THROUGH OUR POSTERS, SO ANOTHER WAY FOLKS CAN ENGAGE IS THROUGH PROGRAMS, YOU CAN SIGN UP AT THE PARTNERSHIP TO RECEIVE THOSE POSTERS, GEO TARGETED SO IF THERE'S A MISSING CHILD AND WE BELIEVE THEY MAY BE IN THE LOCATION YOU'LL GET THAT NOTIFICATION, AND THE PUBLIC CAN PARTICIPATE. FACEBOOK HELPS AND OTHER PARTNERS AS WELL. AND WE HAVE THE ANALYTICAL SUPPORT THAT OUR ANALYTICAL SERVICES DIVISION CAN PROVIDE TO LAW ENFORCEMENT SO YOU CAN SEE ON THE SLIDE THERE'S ALL KINDS OF DIFFERENT RESOURCES THAT WE HAVE THAT ARE DONATED TO THE NATIONAL CENTER. THERE'S ALSO A LOT OF OPEN SOURCE STUFF OUT THERE, LIKE YOU SEE FACEBOOK, INSTAGRAM, A LOT OF THINGS THAT ARE AVAILABLE JUST OPEN SOURCE. WE ALSO HAVE PARTNERSHIPS WITH THESE ORGANIZATIONS AS WELL. BUT THE UNIQUE THING WE CAN TAKE ALL THESE DIFFERENT PIECES OF INFORMATION THROUGH OUR PARTNERSHIPS THAT ARE PUBLIC AND PRIVATE AND PUT THEM TOGETHER FOR LAW ENFORCEMENT. AS I MENTIONED, MOST HAVE LESS THAN 50 ON THE STAFF, MOST MAY NOT HAVE ANALYTICAL SERVICES UNIT IN THEIR LAW ENFORCEMENT, AND EVEN IF THEY DO WE HAVE AN ENTIRE TEAM OF FOLKS DEVOTED TO THIS AND WHO HAVE INCREDIBLE EXPERTISE. EVERYTHING I'M TALKING ABOUT WE COULD TALK ABOUT FOR AN HOUR OR TWO IN TERMS OF WHAT THESE FOLKS ARE ABLE TO DO, LIKE I SAID TEAM ADAM FOLKS WHEN THEY GET TRAINED AND COME ON BOARD THEY ARE WITH US FOR ALMOST A WEEK GETTING TRAINED ON ALL THE FREE RESOURCES THAT WE HAVE. SO JUST KIND OF DUSTING THE SURFACE HERE. I ALSO MENTIONED OUR FAMILY SERVICES DIVISION, REALLY SPECIAL HUMAN BEINGS, A LOT OF THE FOLKS WHO ARE PART OF OUR TEAM HOPE THAT YOU SEE HERE HAVE EXPERIENCED A MISSING OR EXPLOITED CHILD IN THEIR LIFE, RIGHT? I KNOW I TALKED TO A PARENT WHO HAD A CHILD ON THE AUTISM SPECTRUM, UNFORTUNATELY SHE WAS TAKING A SHOWER, THE CHILD BOLTED AND SHE WAS LATER FOUND, BUT SHE HAS TAKEN THAT TRAGEDY AND PROVIDES THAT PEER-TO-PEER SUPPORT, WHEN WE HAVE A PARENT WITH THE SAME EXPERIENCE, RIGHT? JUST REALLY INCREDIBLE, REALLY SPECIAL, AND WE ALSO HAVE A LOT OF RESOURCES THROUGH THE FAMILY ADVOCACY DIVISION THAT CAN PROVIDE SUPPORT AND THEY ARE ALL FREE AND NEVER GO AWAY. HERE'S ANOTHER FEDERAL PARTNER THAT I MENTIONED. WE HAVE THE U.S. POSTAL INSPECTION SERVICE, WE HAVE OUR HOMELAND SECURITY, U.S. SECRET SERVICE, ICE, INCREDIBLE AMOUNTS OF FOLKS WHO HAVE THEIR EXPERTISE AND CAPABILITIES THAT WE'RE ABLE TO LINK UP WITH BECAUSE WE'RE ARE A NON-PROFIT ORGANIZATION BUT WE ARE MANDATED THROUGH CONGRESS TO CARRY OUT A LOT OF OUR FUNCTIONS THAT WE ARE GOING TO -- ARE CARRYING OUT WHICH I'LL TALK ABOUT MOMENTARILY. SO, EARLIER THIS YEAR, AS PART OF OUR OUTREACH AND AWARENESS, REALLY FOCUSING ON OUR LAW ENFORCEMENT PARTNERS WE'VE DONE A COUPLE TRAININGS, ONE IS HOW LOCAL LAW ENFORCEMENT CAN BUILD AN OUTREACH AND AWARENESS PROGRAM. I'M SURE A LOT OF FOLKS WHO ARE PART OF THIS COMMITTEE ARE FAMILIAR WITH OFFICER LORI REYES, SHE'S A LEADER IN THIS SPACE AND HAS BEEN AN INCREDIBLE FRIEND AND MENTOR TO ME. BUT REALLY SHE GAVE A PRESENTATION TALKING ABOUT HOW EASY IT IS TO BUILD THESE PROGRAMS, RIGHT? FOR OUR LOCAL LAW ENFORCEMENT. AND CORE COMPONENTS WERE AN OUTGROWTH OF THAT TRAINING, OFFICER TRAINING, WHICH KRISTIE MENTIONED WAS ALSO BROUGHT UP IN OUR ROUNDTABLE EARLIER THIS YEAR. I MEAN, IT'S JUST NOT SOMETHING THAT MOST LAW ENFORCEMENT OFFICERS ARE MANDATED TO LEARN ABOUT. THERE'S JUST POCKETS OF DIFFERENT ORGANIZATIONS. I KNOW ILLINOIS HAS SOME. THERE'S DIFFERENT STATES THAT HAVE DIFFERENT REQUIREMENTS THAT IT'S SO ESSENTIAL THAT WE GET OUR OFFICERS TRAINED SO THAT WE CAN HAVE THOSE STATES INTERACTIONS AND SWIFT RECOVERIES. NOT JUST ON THE AUTISM SPECTRUM BUT AS KRISTIE MENTIONED OUR WANDERING COMMUNITIES INCLUDING ALZHEIMER'S. AT ANY RATE, SO I'M JUST GOING TO FAST FORWARD. SOME OF OUR OUTREACH AND AWARENESS WE'VE TRIED TO BUILD OVER THE LAST COUPLE YEARS, A LOT IS ON OUR WEBSITE BUT I WANT TO DRAW YOUR ATTENTION. WE TRIED THE MODEL PROGRAMS LIKE OFFICER REYES IN MONTGOMERY COUNTY SO THAT LAW ENFORCEMENT ORGANIZATIONS HAVE THOSE RESOURCES THAT ARE AVAILABLE TO HELP NOT ONLY THEIR ORGANIZATION BUT THEIR COMMUNITIES, RIGHT? SO WE HAVE THOSE ON OUR WEBSITE. WE HAVE A LOT OF MATERIALS LIKE OUR MISSING CHILDREN ON THE ALL SPECTRUM SEARCH PROTOCOLS FOR LAW ENFORCEMENT. WE UPDATED THAT LAST YEAR. I REACHED OUT TO DR. DANIELS ON THAT ALSO. WE HAVE THE REPORT I MENTIONED IN REFERENCE FROM THE DATA. NCMEC CONNECT RESOURCE IS FREE AND AVAILABLE TO ANYONE. YOU HAVE TO REGISTER AND GET VETTED AND FIGURE OUT WHICH CATEGORY YOU'RE IN. ONE IS CLOSED, IT'S FOR LAW ENFORCEMENT PARTNERS BUT THIS OTHER ONE IS AVAILABLE AND WE'LL DO ANOTHER ONE IN A COUPLE WEEKS THAT WILL BE CALLED RESOURCES FOR CHILDREN ON THE AUTISM SPECTRUM SO WE CAN TALK WITH OUR CAREGIVERS ABOUT DIFFERENT THINGS WE'VE LEARNED FROM OUR LAW ENFORCEMENT PARTNERS INCLUDING, AND I DON'T THINK I HAVE IT ON SLIDES, THE IMPORTANCE OF CALLING 911 AND CALLING NCMEC BUT OF COURSE 911 FIRST WHEN YOUR CHILD IS MISSING BECAUSE TIME IS OF THE ESSENCE. THE LONGER OUR KIDS ARE MISSING, THE MORE LIKELY WE ARE TO HAVE AN UNFORTUNATE OUTCOME. WHAT WE'VE LEARNED IS THAT SOMETIMES PARENTS DON'T WANT TO CALL BECAUSE THEY FEEL THEY ARE ASHAMED OR THEY ARE GOING TO LOOK LIKE A BAD PARENT BUT PART OF OUR JOB AT NCMEC IS NOT JUST HELPING LAW ENFORCEMENT UNDERSTAND THESE CHILDREN AND HOW TO SEARCH FOR THEM AND INTERACT WITH THEM BUT ALSO GIVING THAT SUPPORT TO OUR FAMILIES AND OUR CAREGIVERS SO THEY CAN START TO BUILD RELATIONSHIPS WITH LAW ENFORCEMENT AND SAY MY CHILD IS ON THE ALL SPECTRUM. THEY MAY RUN, THEY MAY BOLT. I NEED YOUR HELP, I NEED YOUR SUPPORT KEEPING MY CHILD SAFE SO WHEN LAW ENFORCEMENT HAS THAT INFORMATION AND UNDERSTANDING WE CAN, AGAIN, HAVE THOSE POSITIVE INTERACTIONS AND POSITIVE OUTCOMES. SO WE'VE DONE SOME BLOGS ON SAFETY, SEARCHING WATER, A GREAT RELATIONSHIP WITH LORI FROM NATIONAL AUTISM ASSOCIATION, SIMILAR TO DR. DANIELS I REACHED OUT TO HER TWO YEARS AGO. SHE'S BEEN AN INCREDIBLE FRIEND AND MENTOR AND INCREDIBLE PARTNER FOR NCMEC. SHE ACTUALLY CAN REPORT MISSING CHILDREN THAT SHE'S SEEN COME IN TERMS OF NEWS, RIGHT? SHE SENDS THAT TO OUR CALL CENTER AND SAYS PLEASE ASSIST, OUR CALL CENTER FOLKS GET ON AND IMMEDIATELY REACH OUT TO LAW ENFORCEMENT. REALLY INCREDIBLE HUMAN BEING AND ORGANIZATION. OF COURSE WE HAVE OUR PARTNERSHIP WITH THE INTERNATIONAL ASSOCIATION AND BUREAU OF JUSTICE ASSISTANCE SO WE'RE THRILLED ABOUT THAT PARTNERSHIP AND ALL OF THE THINGS WE'RE LEARNING AND WAYS WE CAN BETTER SUPPORT OUR FAMILIES WITH WANDERING POPULATIONS. NEXT I'M GOING TO TALK THROUGH SOME ISSUES WE SEE AROUND REDUCING CHILD SEXUAL EXPLOITATION AND ALSO SOME PREVENTION MATERIALS THAT WE HAVE. SO THIS GUIDE DESCRIBES WHAT IS SEXUAL EXPLOITATION. I WON'T GO INTO DETAIL. THESE TERMS ARE ALL TAKEN FROM THE LEGISLATION THAT TALKS ABOUT THIS ISSUE, AND PART OF -- AND DEFINES HOW WE CARRY OUT OUR MANDATE AS PART OF THE CYBER TIP LINE. ONE THING I WANTED TO DRAW ATTENTION TO IS THIS TERMINOLOGY CHILD SEXUAL ABUSE MATERIALS. IN THE LAW IN DIFFERENT LAWS WE STILL HAVE THE TERMINOLOGY OF CHILD PORNOGRAPHY WHICH AS AN ORGANIZATION WE DON'T USE THAT LANGUAGE. WE CALL IT WHAT IT IS, CHILD SEXUAL ABUSE MATERIAL. SO IF YOU INTERACT WITH FOLKS ON A REGULAR BASIS WE CALLED IT CSAM, THAT'S WHAT WE'RE TALKING ABOUT. IN TERMS OF ONLINE ENTICEMENT, I'LL READ THIS. THIS INVOLVES INDIVIDUAL COMMUNICATING WITH SOMEONE BELIEVED TO BE A CHILD VIA THE INTERNET WITH THE INTENT TO COMMIT A SEXUAL OFFENSE OR ABDUCTION. IT'S IMPORTANT HERE, BELIEVED TO BE A CHILD, BECAUSE SOME OF THE WORK THAT OUR ORGANIZATION DOES IS MAKE SURE WE'RE MAKING THAT DETERMINATION THAT A CHILD IS INVOLVED, AND OF COURSE ONCE WE KNOW THAT ALL OF THESE DIFFERENT THINGS ARE GOING TO COME INTO PLAY IN TERMS OF OUR SUPPORT FOR THESE KIDDOS. THIS SLIDE TALKS ABOUT OUR CYBER TIP LINE WORKFLOW. THE NUMBER I'LL SHARE AT THE END BUT WE SHARE THE SAME NUMBER, IT'S EASY TO REMEMBER, 1-800-THE-LOSS. THESE CAN COME THROUGH A TRADITIONAL PHONE, FOLKS CAN MAKE THESE TIPS ONLINE AS WELL. SO THE DIAGRAM HERE HAS AN INDIVIDUAL AT A COMPUTER. THIS COULD BE -- THIS IMAGE COULD BE THE CHILD THAT'S, YOU KNOW, REPORTING THE ABUSE THAT HAPPENED TO THEM, THIS IS REALLY ANYONE FROM THE PUBLIC, ANYONE CAN MAKE THIS REPORT, RIGHT? AND ALSO, ELECTRONIC SERVICE PROVIDERS, LOOKING AT THE NAME FOR THINGS, ELECTRONIC SERVICE PROVIDERS ARE MANDATED BY LAW TO REPORT CHILD SEXUAL ABUSE MATERIALS TO NCMEC. SO ONCE THOSE COME IN WE HAVE OUR CYBERTIPLINE WHO TAKE THE CASE AND PRIORITIZE, e-1, 2, OR 3, ELECTRONIC SERVICE PROVIDER, PRIORITY ONE THIS CHILD IS IN IMMINENT DANGER, WE HAVE TO ACT IMMEDIATELY, OKAY? PRIORITY 2 WE BELIEVE THAT THE CHILD IS GOING TO ACT OR THERE'S GOING TO BE SOMETHING THAT'S GOING TO TAKE PLACE. AND THEN PRIORITY 3, UNFORTUNATELY SOMETHING'S ALREADY HAPPENED. THIS HAS TAKEN PLACE, HAPPENED IN THE PAST, WE WANT TO GO IN AND START PROVIDING DIFFERENT RESOURCES WE HAVE. WHEN WE GET OUR PRIORITIZATION, OUR ANALYSTS ARE TRYING TO CONNECT THE DOTS FROM THE INFORMATION THAT'S BEEN REPORTED TO NCMEC. WE SAY IN ALL CASES, MISSING AND EXPLOITED CHILDREN, THE MORE INFORMATION, NO MATTER HOW SMALL, EACH PIECE OF INFORMATION IS UTILIZED AND CAN HELP CONNECT THE DOTS. WE'RE FIGURING OUT WHERE IN THE WORLD THIS IS TAKING PLACE, LITERALLY, RIGHT? WHERE IS THE CHILD? WHERE IS THE OFFENDER? SO WE CAN THEN START PUTTING TOGETHER OUR ANALYSIS AND GET THE RIGHT JURISDICTIONS AND FOLKS INVOLVED AND GETTING THAT INFORMATION TO LAW ENFORCEMENT THAT THEY CAN CONTINUE. THEY ARE THE INVESTIGATORS, BE CLEAR, WE'RE PROVIDING ANALYTICAL SUPPORT AND LAW ENFORCEMENT PARTNERS ARE DOING ALL OF THAT BOOTS ON THE GROUND INVESTIGATION. SO SOMETHING ELSE I WANTED TO BRING TO YOUR ATTENTION, SOME OF THIS INFORMATION IS AVAILABLE AGAIN ON OUR PUBLIC WEBSITE. WE JUST HAVE IT SOMETIMES IN DIFFERENT WAYS. WHAT'S IMPORTANT HERE TO SEE IS THAT IN THE CASES THAT ARE REPORTED TO US WHEN WE LOOK AT THE RELATIONSHIP OF THE EXPLOITER TO THE CHILD, 50% HAD DIRECT ACCESS TO THE CHILD. THAT MEANS THEY ARE KNOWN, RIGHT? GUARD PANS, PARTNER, BABY-SITTER, COACH, RELATIVE, FAMILY FRIEND. THERE'S A PIECE OF US THAT WANTS TO SAY THIS IS SCARY, RIGHT? THESE ARE FOLKS KNOWN TO THE CHILD. AND WHO ARE IN WHAT WE WOULD CALL TRADITIONALLY TRUSTED ADULTS, RIGHT? SO IT'S JUST SOMETHING TO BE AWARE OF AND WHY THESE NEXT MATERIALS ARE SO IMPORTANT FOR FOLKS TO BE FAMILIAR WITH AND KNOW THEY EXIST. THIS JUST HAS THE LATEST DATA THAT WE HAVE SEEN INCREASE FROM 2019 TO 2020. OF COURSE THE ENTIRE WORLD STARTED BEING AT HOME, BEING ONLINE AT THE ELEVATED LEVEL ALL OF LAST YEAR, CONTINUING THIS YEAR. WE'VE SEEN THIS INCREDIBLE SPIKE IN TERMS OF THE REPORTS, JUST GATHERING NUMBERS, RIGHT? THE OTHER THING TO KEEP IN MIND THINKING ABOUT ONLINE ENTICEMENT IS THAT PERPETRATORS ARE LOOKING FOR EASY TARGETS. THIS IS TRUE IN ANYTHING. BUT PERPETRATORS ARE LOOKING FOR EASY TARGETS. MANY OF OUR KIDDOS CAN FALL VICTIM TO THAT MANIPULATION. IT'S A VERY HUMAN NEED TO WANT TO FEEL LOVED, WANT TO FEEL CONNECTED, TO WANT TO FEEL LISTENED TO. THESE ARE THINGS THAT ARE NORMAL AND THAT ALL OF US FEEL, CHILD OR ADULT, BUT OUR CHILDREN HAVE MORE TROUBLE DISCERNING BAD BEHAVIOR OR DANGER WHICH INCREASES THEIR RISK. CHILDREN FEEL EXCLUDED SEEKING A CONNECTION ARE AT RISK. AT OUR ORGANIZATION WE'VE STARTED TO TAKE A LOOK NOT AT JUST SEARCH PROTOCOLS WHEN THINKING ABOUT THE AUTISM SPECTRUM BUT ALSO OTHER VULNERABILITIES THEY MAY HAVE, ANOTHER LENGTH WE'RE USING AS AN ORGANIZATION AND SOMETHING THAT WE'RE TRYING TO RAISE AWARENESS WITH THE FOLKS WHO ARE SUPPORTING AND CARING FOR CHILDREN ON THE AUTISM SPECTRUM. SO, I TALKED A LOT ABOUT SOME HARD TOPICS IN TERMS OF THE EXPLOITATION THAT WE SEE. I WANT TO WALK THROUGH SOME OF THE INCREDIBLE RESOURCES THAT WE HAVE FOR FAMILIES AND FOR CHILDREN. NETSMARTZ, ONLINE SAFETY PROGRAM FOR CHILDREN AND FAMILIES. ONE OTHER THING THAT A COLLEAGUE MENTIONED TO ME WHEN I WAS PREPARING FOR THIS PARTICULAR PRESENTATION. WE DON'T PUT BELLS ON OUR CHILDREN WHEN THEY ARE 18. WE DON'T WAIT UNTIL THEY ARE 18 YEARS OLD TO PUT THEIR SEAT BELTS ON, IN A CAR. WE DO THAT IMMEDIATELY, THE MINUTE THEY CAN GO IN A CAR, THEY ARE IN A CAR SEAT, SEAT BELT, THAT SEAT BELT IS ON. SO IT'S THAT SAME THING. WE DON'T WANT TO WAIT FOR OUR KIDS TO TALK ABOUT ALL THESE DIFFERENT ISSUES PARTICULARLY ONLINE SAFETY. WE WANT TO TALK AT A YOUNG AGE. WE HAVE GREAT RESOURCES ON THE WEBSITE. SOME ARE ACTIVITY GUIDES, ONLINE GAMES, PRESENTATIONS THAT CAN BE DOWNLOADED, THERE'S TIP SHEETS, VIDEOS. IN THE SHROUD SERIES IS -- CLOUD SERIES IS ENGAGING, TALKING ABOUT ISSUES AT THE LEVEL YOUNG FOLKS NEED TO HEAR IT. GREAT RESOURCES. THERE'S RESOURCES FOR HOW FOLKS CAN ASK FOR HELP, RIGHT? THEY WALK THROUGH ALL THE THINGS WE DO, EVEN WHEN TRYING TO DO OUR OWN PRESENTATIONS, RIGHT? SPEAK CLEARLY, BE HONEST, SPEAK WITH HEART, BAD NEWS DOESN'T GET BETTER WITH TIME, RIGHT? NOT ADDRESSING SOMETHING DOESN'T MAKE IT GO AWAY. WE WANT TO HAVE CONVERSATIONS AND FOCUS ON WHAT WE CAN DO GOING FORWARD. AND BEING CALM IS DIFFICULT WHEN WE'RE TALKING ABOUT THESE ISSUES, RIGHT? SO, WE'VE TALKED ABOUT -- I'VE TALKED A LOT OF PREVENTION MATERIALS THAT WE HAVE THAT ARE AVAILABLE FOR FREE. BUT THERE ARE INSTANCES SOMETIMES WHEN SOMETHING'S HAPPENED, RIGHT? WHEN THERE IS SOMETHING THAT'S HAPPENED TO A YOUNG PERSON WE HAVE THE CAPABILITY AT OUR ORGANIZATION TO HELP THEM REMOVE THOSE IMAGES AND COMMENTS ONLINE, PROVIDE THAT TECHNICAL SUPPORT, PROVIDE THAT EMOTIONAL SUPPORT. IF A YOUNG PERSON SHARES THEIR PICTURE WITH THEIR PARTNER OR BOYFRIEND, GIRLFRIEND, YOU KNOW, WHATEVER, THEY BREAK UP, THEN THIS PERSON WANTS TO PUT THAT INFORMATION OUT THERE, THESE ARE THINGS THAT ARE ACTUALLY -- THAT ACTUALLY HAPPEN, RIGHT? WE HAVE THE RESOURCES THAT CAN PROVIDE COMFORT AND SUPPORT TO YOUNG FOLKS AND FAMILIES WHO HAVE EXPERIENCED THAT AND WE HAVE OUR OFFICE OF LEGAL COUNSEL WHO CAN PROVIDE ASSISTANCE AND GUIDANCE THROUGH THIS PROCESS AND THEN WE'RE ALWAYS WORKING WITH OUR LAW ENFORCEMENT PARTNERS AND OTHER FOLKS TO HELP IN THE RESPONSE FOR CSAM IF SOMEONE HAS EXPERIENCED THAT. THE LAST THING IS JUST, AGAIN, A LOT OF FREE RESOURCES ARE AVAILABLE ON OUR -- IT'S CALLED NCMEC CONNECT SITE. SO YOU CAN TAKE A MUCH DEEPER DIVE IN UNDERSTANDING CHILD SEXUAL ABUSE MATERIAL AND ITS IMPACT, WE HAVE AN INTRODUCTION TO CHILD SEX TRAFFICKING WHICH I DIDN'T EVEN TALK ABOUT TODAY. AND THEN OUR OTHER CHILD SAFETY RESOURCES AND ALSO THOSE PRESENTATIONS THAT I MENTIONED ABOUT HOW LAW ENFORCEMENT CAN BUILD OUTREACH AND AWARENESS AND SEARCH PROTOCOLS, INCREDIBLE WEALTH OF FREE RESOURCES THAT ARE THERE. MY NAME IS JOY, AND THAT'S MY E-MAIL INFORMATION. 1-800-THE LOST. I ANSWER ALL MY E GALES JUST -- I ANSWER MY E-MAILS, JUST LIKE DR. DANIELS, SO REACH OUT, I WANT TO HELP FOLKS IN ANY WAY I'M ABLE. THAT'S WHAT I HAVE, DR. DANIELS. >> THANK YOU SO MUCH, JOY AND KRISTIE FOR THAT INFORMATION-PACKED SESSION. WE APPRECIATE YOUR PRESENTATIONS. WE'D LIKE TO TAKE A FEW MINUTES FOR QUESTIONS. I SEE THAT WE HAVE ONE HAND UP, A SECONDHAND UP. WE'RE RUNNING OVER SO I WON'T TAKE A LOT OF QUESTIONS BECAUSE WE DO WANT TO MOVE TO PUBLIC COMMENT BUT I DO WANT TO GIVE YOU A CHANCE FOR DISCUSSION. SO, FIRST HARI. YOU'RE ON MUTE, HARI. >> THERE IS ALSO UNDERREPORTING BY SERVICE PROVIDERS AND SCHOOL DISTRICTS, IN ONE OF MY OWN SPECIAL EDUCATION CLASSROOMS A KID WENT MISSING, I THINK THE CLASSROOM STAFF WERE TRYING TO LOOK FOR HIM AS THE REST OF US HAD TO STAY INDOORS. LATER HE WAS FOUND WANDERING A MILE AWAY AND RETURNED HIM TO THE NEAREST SCHOOL. THE MAIN CONVERSATION I OVERHEARD, THE FAMILY NEVER KNEW THEIR KID WAS MISSING FOR MOST OF THE DAY. THE QUESTIONS THIS RAISES ARE WHAT IF THAT GUY HAD NOT BEEN A ABOUT SAMARITAN, AT WHAT POINT WOULD FAMILY AND LAW ENFORCEMENT HAVE BEEN INVOLVED, HOW FREQUENT IS THIS SITUATION? >> SO, OH, THAT'S A TERRIBLE THING TO HEAR ABOUT DEFINITELY. AT THE END OF THE DAY LAW ENFORCEMENT ONLY KNOWS IF IT'S REPORTED, RIGHT? JUST LIKE US. WE ONLY KNOW IF THERE'S A REPORT. SO I MEAN TO ANSWER YOUR QUESTION, THIS PERSON WAS A GOOD CITIZEN BUT THIS IS ONE OF THE DANGERS, THAT'S UNFORTUNATE THAT THOSE FOLKS HAD THAT APPROACH OF NOT SHARING THAT WITH THE FAMILY. YEAH, WE WANT TO ENGAGE LAW ENFORCEMENT AND THE NATIONAL CENTERS AS QUICKLY AS POSSIBLE TO ENCOURAGE THAT TO OUR SCHOOL ADMINISTRATORS ALSO. WE DO HAVE SOME OUTREACH THAT WE DO WITH OUR -- WITH SCHOOLS, RIGHT? AND SO SHARING THAT INFORMATION A LOT OF THE TIME WHEN TALKING TO SCHOOLS WE'RE TALKING MORE ON THE EXPLOITED SIDE BUT IT'S AN IMPORTANT POINT TO NOTE WHEN THE YOUNG FOLKS GO MISSING, AND THEY DO GO MISSING FROM SCHOOLS, THAT'S SOME DATA WE HAVE ACROSS THE BOARD, THAT'S WHERE A YOUNG PERSON MIGHT GO MISSING FROM. WE'RE CONSTANTLY WORKING ON THAT IN TERMS OF GETTING FOLKS TO CALL 911 AND NCMEC AND OF COURSE INFORM THE FAMILY, DEFINITELY. >> THIS IS KRISTIE. KEVIN AND AVONTE GRANT PROGRAM, ONE OF THE PIECES WE WANT TO DO IS WORK TO EDUCATE THE PUBLIC TO RECOGNIZE THE SIGNS OF AN INDIVIDUAL THAT MIGHT BE MISSING AND SO WE ARE WORKING WITH OUR SITES TO DO THAT SO IN A SITUATION THAT YOU DESCRIBED, YOU KNOW, WE WOULD WANT THIS PERSON THAT LOCATED THE YOUNG MAN THAT HAD GONE MISSING FROM SCHOOL THAT OTHERS WOULD BE ABLE TO RECOGNIZE THAT, BUSINESSES WOULD BE ABLE TO RECOGNIZE SIGNS OF INDIVIDUALS WHO MAY BE IN DISTRESS AND MISSING AND THEN BE ABLE TO ALSO CONTACT LAW ENFORCEMENT IN A WAY THIS INDIVIDUAL DID. SO THERE'S A BIG EDUCATION PIECE TO THE KEVIN AND AVONTE PROGRAM THAT WE'RE WORKING ON. >> THANK YOU. I'M GOING TO TAKE QUESTIONS FROM A COUPLE PEOPLE WHO DIDN'T HAVE A CHANCE TO SPEAK YESTERDAY. >> I THINK YOU'RE MUTED. WE CAN'T HEAR YOU. >> IF YOU'RE TAKING A MOMENT TO TYPE SOMETHING INTO THE CHAT, WE CAN MOVE TO CRAIG JOHNSON FOR A MOMENT AND COME BACK TO YOU. CRAIG JOHNSON? >> YEAH, ONE OF THE THINGS THAT -- I'M A FATHER OF AN AUTISTIC SON. ONE OF THE THINGS WE FACE IS EDUCATING US AS PARENTS ON, YOU KNOW, OUR CHILD IF THEY ARE RUNNING OR IF THEY TAKE OFF OR IF THEY HAPPEN TO GET LOST LIKE THAT. DO YOU PROVIDE ANY TRAINING FOR PARENTS IN WORKING WITH THE KIDS, WITH OUR KIDS, AND SHOWING THEM WHAT TO DO WHEN THEY GET LOST OR WHEN THEY ARE IN A DANGEROUS SITUATION, BECAUSE I THINK THAT WOULD BE REALLY HELPFUL. ONCE THEY ARE THERE, IT'S REALLY CHALLENGING, YOU KNOW, FOR THE CHILDREN THAT THEY PUT THEMSELVES IN DANGEROUS SITUATIONS AT TIMES AND DON'T KNOW WHAT TO DO AND CAN EVEN HIDE THEMSELVES OR BE UNABLE TO RESPOND TO RESCUERS. SO IS THERE ANY TYPE OF EDUCATION THAT YOU DO FOR PARENTS TO WORK WITH OUR KIDS ON WHAT TO DO IN THOSE SITUATIONS? >> SO, THANK YOU FOR THE QUESTION. IN A COUPLE WEEKS WE'LL HAVE REALLY THAT FIRST WEBINAR WHERE IT'S FOCUSED ON CAREGIVERS OF CHILDREN ON THE AUTISM SPECTRUM. LIKE I SAID WE'RE ALWAYS TRAINING LAW ENFORCEMENT, LAW ENFORCEMENT PARTNERS, BUT TO YOUR EXACT POINT THAT'S SOMETHING THAT WE REALLY WANT TO ADDRESS AS AN ORGANIZATION. SO I'M STILL WORKING ON THE PRESENTATION. SO I'M TALKING TO LORI McELROY ABOUT THE PRESENTATION. I HAVE ALL THESE THINGS I WANT TO TALK ABOUT. WE HAVE DIFFERENT FOLKS WHO ARE GOING TO TALK ON THE LAW ENFORCEMENT PERSPECTIVE AND MY COLLEAGUE ABOUT TALK ABOUT THE EXPLOITIVE STUFF. WE CAN MAKE SOME CONCRETE INFORMATION FOR FAMILIES. WE INTEND TO FOCUS ON TO CALL 911, WE HAVE A 911 SCRIPT, I'M SORRY, I'M TAKING UP TOO MUCH TIME. TAKE MY E-MAIL, I WOULD LOVE TO CHAT ABOUT THE PRESENTATION. I FORGOT I WENT OVER MY TIME. >> SUSAN, I'M WONDERING IF WE CAN HEAR -- MAYBE WE'LL HAVE MORE TIME IF WE CAN GET THROUGH THE PUBLIC COMMENT. >> THAT SOUNDS GREAT. I DO HAVE A COMMENT HERE FROM RENEKE. THANKS FOR YOUR PRESENTATION. IT WAS VERY THOUGHT PROVOKING AND ENCOURAGING TO LEARN OF SOME OF THE SUCCESSES IN TERMS OF CHILDREN BEING SAFELY REUNITED WITH PARENTS AS A RESULT OF RESOURCES THAT HAVE BEEN PROVIDED TO ENTITIES AS A RESULT OF YOUR PROGRAM. I HAVE TO SHARE THAT I HAVE A GREAT SENSE OF AMBIVALENCE ABOUT THIS AS AN EDUCATOR, I WILL NEVER FORGET SENSE OF DREAD I FELT WHEN I WAS NOTIFIED A CHILD IN THE CAMPUS WHERE I WAS EMPLOYED AT THE TIME WAS MISSING. AND AS A MOM WHO KNOWS FROM PERSONAL EXPERIENCE THAT ALARMS, GATES AND CAMERAS HELP BUT DON'T PREVENT A CHILD FROM FINDING THEIR WAY OUTSIDE OF THE HOME. THIS IS AN IMPORTANT TOPIC FOR MANY FAMILIES. WANDERING HAS BEEN A CONCERN BECAUSE IT'S SOMETHING OUR FAMILY HAS DEALT WITH. HOWEVER, I AM ALSO A BLACK AUTISTIC OF PARENT ON THE CHILDREN AND A CHILD WITH INTELLECTUAL DISABILITY, ALSO BLACK, I'M EXTREMELY FEARFUL ABOUT IMPLICATIONS OF SURVEILLANCE AND TRACKING DEVICES. BEFORE THE WORLD SEES AN AUTISTIC PERSON THEY SEE A BLACK PERSON AND LIKELIHOOD A DISABLED PERSON OF COLOR WILL HAVE CHALLENGING ENCOUNTERS ENCOUNTERS WITH LAW ENFORCEMENT IS HIGH. THIS WOULD BE LAST RESORT OPTION BUT I BELIEVE THERE ARE A NUMBER OF POLICE REFORMS THAT NEED TO BE MADE BEFORE WE CONSIDER THESE TYPES OF TOOLS. RESPECTFULLY THEY ARE PROFILING AND KILLING US FOR THE COLOR OF OUR SKIN, I DON'T KNOW THAT I FEEL CONFIDENT THAT THERE'S COMPETENT DEVELOPMENTAL DISABILITY KNOWLEDGE AND SKILLS NOR SUFFICIENT CULTURAL COMPETENCY TO ENTRUST INDIVIDUALS WITH SUCH AUTHORITY. SO THAT IS THE COMMENT. AND KRISTIE AND JOY, YOU'RE WELCOME TO RESPOND. >> I CAN RESPOND JUST FROM THE SPACE THAT I ALSO SUPPORT THAT I MENTIONED AT THE NATIONAL CENTER, WHICH IS OUR MISSING CHILDREN OF COLOR AND INDIGENOUS CHILDREN. WE DEFINITELY SEE SOME DATA THAT WE ARE CONCERNED ABOUT AS AN ORGANIZATION, AND I KNOW THAT WHEN I WAS SPEAKING EARLIER I WAS TALKING ABOUT HOW WE'RE TRYING TO ENCOURAGE SAFE INTERACTIONS AND SWIFT RECOVERIES, RIGHT? AND THAT'S KIND OF WHAT YOU JUST TOUCHED ON, FORGIVE ME, THE INDIVIDUAL WHO JUST RAISED THAT IS, YOU KNOW, THERE ARE INSTANCES WHERE POLICE ARE RESPONDING AND WE -- NOT WE, THEY, YOU KNOW, OUR LAW ENFORCEMENT PARTNERS ARE COMING WITH ALL KINDS OF THINGS THAT WE'RE TRYING TO ADDRESS IN TERMS OF RACIAL BIASES AND PREJUDICE AND SO WE DO A LOT OF TRAINING ON THAT ALSO. SO DEFINITELY AN IMPORTANT ISSUE THAT WE'RE LOOKING AT, AT THE NATIONAL CENTER AND I'LL JUST PAUSE FOR KRISTIE BECAUSE I THINK YOU WERE -- >> THANK YOU FOR YOUR COMMENT, FIRST OF ALL. I WOULD SAY THE KEVIN AND AVONTE PROGRAM THERE IS A BIG FOCUS ON TRAINING LAW ENFORCEMENT, THAT'S A BIG COMPONENT. THERE'S A PART, TWO CATEGORIES TO THE PROGRAM, ONE IS PRO-ACTIVE PREVENTION TRAINING PIECE AND THE OTHER IS LOCATIVE TECHNOLOGY. SO I THINK WE'RE COGNIZANT OF THE FACT THAT WE DO NEED TO DO MORE TRAINING WITH LAW ENFORCEMENT. I WOULD SAY THE BIG PICTURE THOUGH WHERE I WORK AND WHERE THE PROGRAM IS HOUSED WE HAVE ALL SORTS OF PROGRAMS THAT WE STOOD UP OVER THE PAST YEAR THAT ARE VERY INTENTIONAL WHEN IT COMES TO TRAINING FOR LAW ENFORCEMENT. WE HAVE OUR CRISIS INTERVENTION TRAINING, WE HAVE OUR JUSTICE AND MENTAL HEALTH COLLABORATION SITE. SO THERE ARE PROGRAMS THAT WE HAVE OUT THERE THAT HELP TO ADDRESS SOME OF THE ISSUES THAT YOU MENTIONED. I KNOW WE HAVE BEEN, YOU KNOW, THERE'S AN INCREASED FOCUS ON CONSTITUTIONAL POLICING IN COMMUNITY VIOLENCE REDUCTION STRATEGY. SEVERAL THINGS THAT YOU TOUCHED ON ARE THINGS THAT WE ARE WORKING TO INCLUDE AS FAR AS MAKING THIS SORT OF TRAINING AVAILABLE SO INSTANCES THAT YOU TALK ABOUT THAT YOU SPEAK OF ARE LESS FREQUENT. BUT I'M HAPPY TO TALK TO YOU OFFLINE ABOUT THAT AS WELL. >> THANK YOU. I KNOW THERE WAS AN ADDITIONAL QUESTION, I'M AFRAID WE DON'T HAVE TIME FOR ANYONE ELSE RIGHT NOW. BUT PLEASE FEEL FREE TO REACH OUT TO THE TWO SPEAKERS. IF WE CAN FINISH WITH PUBLIC COMMENT DISCUSSION EARLY ENOUGH CAN GET BACK TO THIS TOPIC IF SPEAKERS WOULDN'T MIND HANGING ON OR IF NOT WE CAN FORWARD QUESTIONS TO THEM ALSO BY E-MAIL AS WELL. >> I'LL BE AVAILABLE. >> THANK YOU VERY MUCH. GREAT. >> THANK YOU. >> SUSAN, I SUGGEST WE TAKE A BREAK TO 2:10 BECAUSE PEOPLE NEED TO TAKE CARE OF THEIR BIOLOGY AND TAKE A MOMENT AND THEN START UP THE PUBLIC COMMENTS AT 2:10, TEN MINUTES LATE. SEE EVERYONE IN FOUR MINUTES. >>I WANT TO MOVE FORWARD ON PUBLIC COMMENT SESSION. WELCOME BACK, DR. GORDON. WE'RE GOING THROUGH PUBLIC COMMENT TODAY. WE HAVE A FEW VIRTUAL COMMENTERS AND APPRECIATE THEM BEING HERE WITH US LIVE TO GIVE THEIR COMMENTS. YOU'LL NOTE THAT ON THE MEETING MATERIALS THAT ARE LISTED ON THE WEBSITE YOU CAN FIND THE FULL TEXT OF THE WRITTEN COMMENTS THAT WERE RECEIVED FOR THIS MEETING AND IN ADDITION A SPECIAL PACKET OF COMMENTS RELATED TO A SPECIFIC TOPIC. YOU'LL FIND THOSE IF YOU SCROLL DOWN. THE NAMES OF FIVE COMMENTERS TODAY ARE ADRIENNE REPORT EL OH, CRYSTAL HERNANDEZ, JULIA BASCOM, EILEEN NICOLE SIMON AND SHANNON DESROCHES ROSA IN THAT ORDER. WELCOME. >> THANK YOU. CAN EVERYONE HEAR ME? >> YES. >> GREAT. THANK YOU TO THE DEPARTMENT OF JUSTICE AND NCMEC FOR BRINGING ATTENTION TO THE LAW TO FRUITION. I'M A PARENT OF AN AUTISTIC CHILD, EDUCATOR, THROUGH MY WORK AND EFFORTS THROUGH A GRANT FROM THE NEW JERSEY DEPARTMENT OF HUMAN SERVICES WE FOUND INDICATIONS OF SAFETY RISKS, MANY COMPOUNDED WITH ISSUES OF INTERSECTIONALITY AND COMMUNICATION AND HEARING, VISION, IDD, PHYSICAL IMPAIRMENTS, MENTAL HEALTH AND MORE. SEVERE KITCHEN BURNS, PEDESTRIAN INDUSTRY, OR ACCIDENTAL POISON, MEDICATION INSTRUCTIONS WERE UNCLEAR. CALLS TO POISON CONTROL CENTERS DON'T RECORD IF A CALLER IS AUTISTIC OR OTHER POTENTIAL FACTORS WHICH MIGHT INFLUENCE POISONING WITH NO RECORDS OF REPETITIVE EPISODES. BY IDENTIFYING PATTERNS IN HOUSEHOLDS AND COMMUNITIES WE CAN DEVELOP AGGREGATE DATA FOR MORE EFFECTIVE PREVENTION AND SAFETY EDUCATION. LOOKING AT THE INTERACTIONS BETWEEN LAW ENFORCEMENT AND AUTISTIC PEOPLE AND RELATED INTERSECTIONALITY ISSUES THESE INCIDENTS ARE OFTEN DOCUMENTED WITH ELEMENTS OF BIAS, DATA RELATED TO QUALITY OF SAFETY EDUCATION AND AUTISM TRAINING FROM LAW ENFORCEMENT, FROM EMERGENCY RESPONDERS ARE MOSTLY ANECDOTAL. WE MUST STUDY EFFICACY AND IMPACT OF CURRENT AND EMERGING SAFETY EDUCATION TO DETERMINE SAFETY RISKS, IDENTIFY DISPARITIES AND INFORM THE DEVELOPMENT OF EFFECTIVE SAFETY EDUCATION AND PROFESSIONAL TRAINING. FUNCTIONAL DATA FOR AUTISM SAFETY ARE MOST OFTEN SUBJECTED, INADEQUATE, DISCRIMINATORY, WE MUST BEGIN TO IDENTIFY AND QUANTIFY AND ANALYZE OUTCOMES TO IMPLEMENT PREVENTION PRACTICES AND SERVICES. THIS NEEDS TO BE DONE EQUITABLY AND ENSURING DATA IN METHODS THAT PREVENT MISUSE AND BIAS. CRITICAL TO EMPOWER AUTISTIC PEOPLE TO BETTER UNDERSTAND AND SAFELY PRACTICE LIFE SKILLS, BY IDENTIFYING POTENTIAL CORRELATIONS AND PATTERNS WE CAN ESTABLISH SAFETY INTERVENTIONS FURTHER INCREASE SAFETY, IMPROVE SERVICES, AND ENHANCE QUALITY OF LIFE OF AUTISTIC PEOPLE. THANK YOU. >> THANK YOU, AND WE'RE GOING TO HAVE EACH COMMENTER JUST GIVE YOUR COMMENTS AND WE'LL HAVE A DISCUSSION PERIOD AFTER WE'VE GONE THROUGH EVERYTHING. NEXT I'LL CALL ON CRYSTAL HERNANDEZ. THANK YOU SO MUCH. >> HELLO. GOOD AFTERNOON. MY NAME IS DR. KRYSTAL HERNANDEZ, CHEROKEE AND LATINA, SERVING ON SUPPORT GROUPS AND PANELS WORKING ON TRIBAL INCLUSION PROJECTS AND RESEARCH. I'VE SEEN STORIES FROM GRANDPARENTS AND PARENTS, COMMUNITIES, INDIVIDUALS, STRUGGLING TO FIND SERVICE AND TREATMENT FOR AUTISTIC LOVED ONES. I SEE CONTINUED DISPARITIES AND ACCESS TO QUALITY CARE, WITHIN COMMUNITIES, UNDERREPRESENTATION AND CULTURAL EXCLUSION. IT'S A PIVOTAL MOMENT WHERE TRIBAL NATIONS ARE STARTING TO BE SEEN AND INCLUDED BUT THERE'S STILL MUCH WORK TO BE DONE. AUTISM IN INDIAN COUNTRY IS UNDERREPRESENTED IN NATIONAL AND STATE DATA. WE MUST FOCUS ON IMPROVING CULTURALLY RELEVANT TOOLS AND SCREENING INSTRUMENTS AND TRAINING THOSE WORKING WITHIN THE FIELD ON CULTURAL HUMILITY AND RESPONSIVENESS, WITH FOCUS ON EMBEDDING APPROPRIATE CALLED REALLY RELEVANT SCREENING PRACTICES IN A VARIETY OF CONVENTIONAL AND UNCONVENTIONAL SETTINGS SUCH AS HEALTH CARE CLINIC, DAY CARES, COMMUNITY CENTERS, NUTRITION PROGRAMS, HEAD STARTS, BEHAVIORAL HEALTH CARE SETTINGS. A FOCUS ON COMMUNITY AND EXTENDED FAMILY COMPOSITIONS IN SYSTEM BUILDING IS NEEDED. WE MUST CHANGE THE NARRATIVE WITHIN COMMUNITIES AND LEARN FROM THOSE WALKING THE JOURNEY, REPRESENTATION MATTERS IN ALL THE PLACES WHERE DECISIONS ARE MADE, NOT JUST IN THEORY BUT IN CONTINUED PRACTICE. THERE'S A NEED TO IMPROVE ACCESS TO CARE IN COMMUNITY SETTINGS, MEETING THE THE PERSON WHERE THEY ARE, REMOVING BARRIERS. WE MUST LOOK BEYOND GAP ANALYSIS AND FOCUS ON ACTUAL ITEMS FOR CONTINUED SYSTEM OVERHAUL. WE NEED TO ALLOW CULTURALLY ROOTED CARE TO BE VIEWED WITH THE SAME FIDELITY AND REIMBURSEMENTS THAT ALL MAINSTREAM TREATMENTS ARE. GIVING HONOR TO LANGUAGE, CUSTOMS, BELIEFS, VALUES, PRACTICES, IS THE ONLY WAY FORWARD. THE VAST ARRAY OF TRIBAL NATIONS ARE NOT HERE TO SIMPLY BE SERVED BUT RATHER WE'RE HERE TO BE PART OF BUILDING MEANINGFUL SYSTEMS OF SERVICE. THANK YOU FOR THIS OPPORTUNITY. >> THANK YOU FOR THAT COMMENT. NEXT JULIA BASCOM. >> THANK YOU SO MUCH. I'M THE EXECUTIVE DIRECTOR OF THE AUTISTIC ADVOCACY NETWORK. THANK YOU FOR THE OPPORTUNITY TO PRESENT KEY THEMES. WE'RE CONCERNED BY LACK OF COMPREHENSIVE RESEARCH AIMED AT ETHICALLY SUPPORTING AUTISTIC PEOPLE WHO LACK EFFECTIVE MEANS OF COMMUNICATION WHO STRUGGLE WITH SELF-INJURY OR AGGRESSION OR REQUIRE INTENSIVE SUPPORT. WITHIN THE SMALL AMOUNT OF RESEARCH THAT LOOKS AT SERVICES AND SUPPORT, SHOCKINGLY LITTLE ATTENTION IS PAID TO URGENT HUMAN RIGHTS ISSUES SUCH AS NEED FOR EFFECTIVE COMMUNICATION. WE URGE YOU TO CHANGE THIS. AS NOTED IN OUR COMMENTS THERE ARE TROUBLINGLY FEW STUDIES WHICH EXAMINE HOW BEST TO SUPPORT NON-SPEECH FORMS OF COMMUNICATION FOR AUTISTIC PEOPLE GIVEN THAT APPROXIMATELY 1/3 DO NOT DEVELOP USABLE ORAL SPEECH, IT'S IMPERATIVE THAT SIGNIFICANT RESEARCH DOLLARS BE DEDICATED TO UNDERSTANDING AND SCALING APPROACHES. THERE IS A ROBUST BODY OF EVIDENCE SHOWING AAC IS EFFECTIVE FOR INDIVIDUALS WITH DISABILITIES THAT IMPACT SPEECH IN GENERAL, INCLUDING PEOPLE WITH SIGNIFICANT INTELLECTUAL DISABILITIES AND INCLUDING AUTISTIC PEOPLE AND THAT ACCESS TO EFFECTIVE COMMUNICATION IS KEY TO REDUCING CHALLENGING BEHAVIORS AND IMPROVING QUALITY OF LIFE. HOWEVER, RESEARCH IS MORE LIMITED ON BEST PRACTICES TO SUPPORT AUTISTIC PEOPLE SPECIFICALLY WITH ASSOCIATED MOTOR, COGNITIVE AND LANGUAGE DIFFERENCES, VERY LITTLE GUIDANCE EXISTS LOOKING TO ACCESS LEVEL OF COMMUNICATION FOR MORE THAN SIMPLE REQUESTS AND RECOMMEND IACC PRIORITIZE DEVELOPMENT OF SUBSTANTIAL RESEARCH ON BEST PRACTICES FOR SUPPORTING ROBUST AND EFFECTIVE AAC FOR AUTISTIC PEOPLE. THE OTHER THING I WANT TO RAISE IS CURRENTLY AUTISTIC PEOPLE WHO STRUGGLE WITH SELF-INJURY OR AGGRESSION LACK ACCESS TO MENTAL HEALTH SERVICES AND ARE ONLY OFFERED BEHAVIOR MODIFICATION PROGRAMS OR MEDICATION WITH LITTLE ATTEMPT TO ADDRESS UNDERLYING NEEDS. THIS IS AN URGENT HUMAN RIGHTS CRISIS, IN ALL CASES AUTISM RESEARCH TO ADDRESS CHALLENGING BEHAVIORS SHOULD ATTEMPT TO UNDERSTAND AND ADDRESS THE ROOT CAUSES OF THAT BEHAVIOR BUT THAT'S NOT WHAT WE'VE SEEN. ASAM RECOMMENDS THE IACC CHANGE THE CHARGE IN RESEARCH THAT EXPANDS OPTIONS AVAILABLE. POSSIBLE TOPICS INCLUES BEST PRACTICES FOR IDENTIFYING AND ADDRESSING UNDERLYING MEDICAL, MENTAL HEALTH, COMMUNICATION NEEDS, EFFECTIVE PROVISION OF COMMUNITY-BASED MENTAL HEALTH SERVICES FOR PEOPLE WITH IDD ESPECIALLY PEOPLE WHO LACK EFFECTIVE MEANS OF COMMUNICATION. PILOT PROGRAMS OF PARTICULAR SERVICES AND SUPPORTS THAT MAY ADDRESS THESE UNDERLYING NEEDS ON INDIVIDUALIZED BASIS AND SCALING EFFECTIVE APPROACHES AND BUILDING CAPACITY OF PROVIDERS TO SUPPORT PEOPLE WITH IDD WHO MAY STRUGGLE WITH CHALLENGING BEHAVIOR SAFELY AND HUMANELY IN THE COMMUNITIES. THIS RESEARCH SHOULD BE CONDUCTED TO MAXIMUM EXTENT POSSIBLE, IN PARTNERSHIP WITH AUTISTIC PEOPLE PARTICULARLY AUTISTIC PEOPLE OF CO-OCCURRING MENTAL HEALTH OR INTELLECTUAL DISABILITIES, AND WHO CURRENTLY OR BY HISTORY STRUGGLE WITH SELF-INJURY OR AGGRESSION. THANK YOU SO MUCH. >> THANK YOU, JULIA. NEXT I'D LIKE TO MOVE TO EILEEN NICOLE SIMON. WELCOME. >> THANK YOU. MY AUTISTIC SON WAS NEARLY 6 YEARS OLD BEFORE HE LEARNED HOW TO SPEAK. LANGUAGE DISORDER IS THE MOST SERIOUS HANDICAP OF AUTISTIC CHILDREN. SOCIAL DISORDER IS THE RESULT OF THE LANGUAGE DISORDER BUT SINCE THE 1980s SOCIAL DISORDER HAS BECOME THE FOCUS OF MOST RESEARCH. THIS HAS LED TO RECENT CLAIMS BY MANY PEOPLE WHO BELIEVE THEY ARE AUTISTIC BUT THEIR AUTISM WAS MISSED AS CHILDREN. I WANT TO URGE IACC TO MAINTAIN FOCUS ON DEVELOPMENTAL LANGUAGE DISORDER AND ITS CAUSES. INFANTS LEARN LANGUAGE THROUGH SENSE OF HEARING. PROFESSOR ROGER BROWN AT HARVARD DETERMINED THAT SPEECH BEGINS WITH THE USE OF STRESSED SYLLABLES. STRESSED SYLLABLES BECOME MORE AND MORE DIFFICULT TO DETECT DURING THE FIRST TEN YEARS OF LIFE. THIS IS WHY LEARNING A NEW LANGUAGE BECOMES MORE AND MORE DIFFICULT. LANGUAGE DEVELOPMENT SHOULD BE THE PRIMARY FOCUS OF RESEARCH. USE OF SINGLE SYLLABLES SHOULD BE ENCOURAGED IN ATTEMPTS TO TEACH AUTISTIC CHILDREN TO LEARN TO SPEAK. PLEASE DISCUSS LANGUAGE DEVELOPMENT AS THE MOST IMPORTANT FOCUS OF RESEARCH WITH AUTISTIC CHILDREN. THANK YOU. >> THANK YOU, DR. SIMON. AND NEXT WE HAVE SHANNON DESROCHES ROSA. YOU'RE ON MUTE STILL. THANK YOU SO MUCH. >> I'M NO LONGER ON MUTE. HI, I'M SHANNON ROSA. I AM THE MOTHER OF A 20-YEAR-OLD HIGH SUPPORT AUTISTIC YOUNG MAN AND SENIOR EDITOR OF THE AUTISM INFORMATION AND ADVOCACY COMMUNITY THINKING PERSON'S GUIDE TO AUTISM. MY SON IS A THINKING, FEELING, HUMAN BEING JUST LIKE YOU. HE DESERVES A GOOD LIFE. MY HUSBAND AND I LOVE HIM DEARLY, ENJOY HIS COMPANY AND DO OUR BEST TO HELP HIM FEEL HEALTHY, HAPPY, SAFE. HOWEVER, IT IS CHALLENGING FOR FAMILIES TO GIVE OUR AUTISTIC LOVED ONES THOSE LIVES THEY DESERVE AS CURRENT PUBLIC AND PRIVATE AUTISM EFFORTS FOCUS DISPROPORTIONATELY ON THEORETICAL UNBORN AUTISTIC PEOPLE RATHER THAN INVESTING IN BEST SUPPORT PRACTICES FOR EXISTING AUTISTIC PEOPLE LIKE MY SON. PER THE IACC'S ANALYSES, AUTISM RESEARCH FUNDING IS PRIMARILY FUNNELED INTO RISK FACTORS AND BIOLOGY, WITH LESS THAN 10% PRIORITIZING LIFESPAN ISSUES AND SERVICES. I DO NOT UNDERSTAND HOW THIS IS CONSIDERED ACCEPTABLE. MY SON AND THE AUTISTIC COMMUNITY DESERVING TO BE LIVING THEIR BEST LIVES NOW, DESERVE FAMILY, CAREGIVERS AND THERAPISTS WHO UNDERSTAND HOW TO HELP THEM THRIVE NOW. THEY DESERVE ACCESS TO WELL-TRAINED AND PAID EDUCATORS AND SUPPORT WORKERS NOW. THEY DESERVE MEDICAL PROFESSIONALS VERSED IN BEST PRACTICES FOR TREATING AUTISTIC PEOPLE NOW. IN ONE YEAR MY SON AND HIS PEERS WILL AGE OUT OF THE SCHOOL SYSTEM, YET NO EXISTING FEDERAL, STATE OR LOCAL FRAMEWORK EXISTS TO TRANSITION TO OR SUPPORT THEM IN FULFILLING AND DIGNIFIED LIVES AS ADULTS. WE NEED THOSE FRAMEWORKS NOW. EVEN SO, MY FAMILY WAS LUCKY. WE HAVE DECENT AUTISM SERVICES IN OUR AREA, AND WE HAVE THE LANGUAGE, KNOW-HOW AND SOCIOECONOMIC ADVANTAGES NEEDED TO ACCESS THOSE SERVICES. AT THE SAME TIME, WE ALL KNOW THAT LESS ADVANTAGED AUTISTIC PEOPLE ARE MISSING OUT PARTIALLY OR ENTIRELY AS ARE AUTISTIC PEOPLE PERCEIVED AS LOWER SUPPORT THAN MY SON YET WHO STILL REQUIRE SIGNIFICANT ACCOMMODATIONS. THIS IS UNCONSCIONABLE. FINALLY, WE NEED TO RECOGNIZE THAT AUTISM ISSUES MUST HAVE AUTISTIC GUIDANCE. MY SON'S QUALITY OF LIFE IMPROVED DRAMATICALLY ONCE WE ALL HAD ACCESS TO AUTISTIC INSIGHTS ON SUPPORTING AUTISTIC PEOPLE AND EVERY AUTISTIC CHILD AND ADULT IN THIS COUNTRY DESERVES THE SAME OPPORTUNITIES AND BENEFITS. THANK YOU FOR LISTENING. >> THANK YOU, SHANNON. THANK YOU TO ALL OUR VIRTUAL COMMENTERS FOR TAKING THE TIME TO BE HERE AND SHARE YOUR SHOTS. WE ALSO HAVE PEOPLE THAT SENT WRITTEN COMMENTS AND I'LL ACKNOWLEDGE THOSE AND I BELIEVE THAT YOU CAN SEE MY SCREEN. SO WE HAD SEVERAL WRITTEN COMMENTS THAT CAME IN. YOU CAN FIND THE FULL TEXT OF THESE COMMENTS ON THE IACC WEBSITE UNDER THE MEETING MATERIALS FOR THIS MEETING. I'M NOT GOING THROUGH READING OFF EVERY NAME AS IT'S A LONG LIST OF NAMES BUT YOU CAN SEE THEM HERE AND YOU CAN READ THE ACTUAL COMMENTS. SO WE RECEIVED COMMENTS ON A NUMBER OF TOPICS INCLUDING PROGRAMS, SUPPORTS, HOUSING OPTIONS FOR AUTISTIC INDIVIDUALS WITH HIGH SUPPORT NEEDS AND THERE WERE A NUMBER OF COMMENTERS THAT COMMENTED ON THAT. ANOTHER GROUP COMMENTS ABOUT CONCERN ABOUT MEDICAL PRACTICES AND POTENTIAL CAUSES OF AUTISM. THERE WAS ANOTHER GROUP OF COMMENTS ABOUT THE ROLE OF THE IACC AND THE FEDERAL GOVERNMENT. LET'S SEE IF IT'S ADVANCING FOR ME. THERE WE GO. WE HAD SOME COMMENTS ON SERVICE NEEDS, RESOURCES, POLICY IMPLICATIONS. NEEDS OF THE DIRECT SUPPORT PROFESSIONAL WORKFORCE INDIVIDUALS. TREATMENT OF AUTISTIC INDIVIDUALS IN MEDICAL SETTINGS. SERVICES AND SUPPORTS FOR ADULTS WITH AUTISM, OR ON THE SPECTRUM, AND COMMENTS FOR THE IACC STRATEGIC PLAN UPDATE. AND SO I WILL REFER YOU TO THE ACTUAL FULL TEXT COMMENTS AND I KNOW THE COMMITTEE RECEIVED THOSE IN ADVANCE AND HAS HAD A CHANCE TO READ THEM. SO WE'LL BE PREPARED TO RESPOND. IN ADDITION, WE HAVE A PACKET OF COMMENTS THAT ARE CONCERN ABOUT THE USE OF GRADUATED ACCELERATED -- GRADUATED ELECTRONIC DECELERATORS, GED DEVICES, WE TALKED ABOUT THIS AT THE LAST MEETING BUT THIS IS THE FULL LIST OF ALL THE COMMENTERS THAT SENT IN COMMENTS ABOUT THIS TOPIC AND THE FULL TEXT IS AVAILABLE ON OUR WEBSITE. AND WE ALSO WELCOME PEOPLE TO DISCUSS THAT IF YOU WOULD LIKE. SO AT THIS TIME WE HAVE SOME TIME NOW FOR THE COMMITTEE TO HAVE SOME DISCUSSION ABOUT ALL THE PUBLIC COMMENTS RECEIVED. >> THANK YOU, SUSAN. >> GO AHEAD. >> THANK YOU, SUSAN, FOR OVERSEEING THE COMMENTS. THANK YOU VERY VERY MUCH TO OUR ORAL COMMENTERS FOR COMING TO US TODAY AND PRESENTING YOUR COMMENTS TO US DIRECTLY. ARE THERE QUESTIONS OR COMMENTS OR FOLLOW-UP FROM ANY MEMBERS OF THE IACC? TIFFANY? >> YES. SUSAN ASKED ME TO TALK ABOUT THE ELECTRONIC STIMULATION DEVICE ISSUE AND I DID CHECK WITH OUR LITIGATOR, SO JUST AS AN OVERVIEW FDA BANNED THEIR USE OF THESE DEVICES AND THEN THIS WAS THE -- THE BAN WAS OVERTURNED BY THE D.C. CIRCUIT BUT IT WAS JUST - A THREE-JUDGE PANEL AND TWO OF THE THREE JUDGES VOTED TO STRIKE DOWN THE BAN. SO NOW THE FDA HAS APPEALED THAT DECISION, FDA AND DOJ APPEALED, IT'S NOW PENDING DECISION BY THE FULL D.C. CIRCUIT FOR ALL 11 JUDGES. THAT'S THE CURRENT STATUS OF THAT ISSUE. BUT IT DID PASS THE ENTIRE LIST OF THE DOCUMENT TO THE TEAM OF LAWYERS SO THEY ARE AWARE OF ALL OF THAT INFORMATION AND CONCERNS. >> THANK YOU FOR THE UPDATE. REALLY APPRECIATE IT. DENA AND ALICIA. >> GOOD AFTERNOON. NICE TO BE HERE. I JUST WANTED TO ADDRESS SOME OF THE THINGS THAT CAME IN. I WANT TO THANK EVERYBODY FOR THEIR COMMENTS TRULY. DR. ROBERTIELLO, I APPRECIATE YOUR COMMENTS AND I JUST WANT TO EXPRESS FOR YOUR COMMENT AND SO MANY OTHERS, YOU KNOW, I'M VERY SENSITIZED TO NEEDS OF HIGH SUPPORT NEEDS INDIVIDUALS. YOU KNOW, I THINK MOST OF US ARE, ALL OF US ARE, WE SEEK TO BE AT LEAST. IT'S JUST IMPORTANT FOR US AS A COMMITTEE AND FOR US AS A COMMUNITY TO REMEMBER THAT NOT ALL HIGH SUPPORT NEEDS ISSUES ARE SUBJECTIVELY OBSERVABLE, NOT EVERYBODY CAN SEE THEM. SO WHEN IT COMES TO LOOKING FOR HOUSING, MENTAL HEALTH SERVICE, SAFETY TRAINING, BETTER INTERVENTIONS TO PROLONG AND ENHANCE THE QUALITY OF LIFE FOR AUTISTIC INDIVIDUALS, I JUST THINK IT'S SO IMPORTANT THAT WE STAND AS A UNIFIED BODY ON THESE POINTS AND RECOGNIZE TOGETHER WE CAN DO MORE. I WANTED TO MENTION TO PEGGY WHO SUBMITTED A COMMENT ABOUT IEP, REACH OUT TO IACC, THEY WILL PUT YOU IN TOUCH WITH ME AND I THINK I CAN HELP YOU WITH SOME THINGS. AND SO I JUST WANTED TO POINT OUT THAT WHILE WE CONTINUE TO HEAR HOW ONE SIDE OF THE COMMUNITY IS LEAVING OUT PEOPLE WITH HIGH SUPPORT NEEDS, I POINT OUT THE (INDISCERNIBLE) TESTIMONY TODAY WHEREBY OVER THREE-QUARTERS WAS FOCUSED ON EXACTLY THAT POPULATION. SO WE NEED TO COME TOGETHER AS A COMMUNITY. I JUST CAN'T EXPRESS THAT ANY STRONGER. IN TERMS OF SAFETY NEEDS GOING BACK TO EARLY PRESENTATION AND THEN WHAT WE'VE HEARD FROM TODAY, I HAVEN'T HEARD MUCH ABOUT TRAINING AUTISTIC INDIVIDUALS TO BE SAFE IN THE COMMUNITY. OBVIOUSLY THERE'S NO GUARANTEES BUT ALL THESE PROGRAMS REALLY NEED TO INVEST IN EQUAL AMOUNT OF TIME ON NOT ONLY HEARING FROM AUTISTIC PEOPLE ABOUT SAFETY NEEDS BUT ALSO EDUCATING AUTISTIC PEOPLE ON HOW TO BE SAFE IN THE COMMUNITY. WE DID HEAR FROM A MEMBER ABOUT INFORMING PARENTS BUT MANY AUTISTIC INDIVIDUALS HAVE NEVER HAD AN OPPORTUNITY TO LEARN FUNCTIONAL SKILLS BECAUSE THEY HAVE BEEN IN ACADEMICS, AND MANY TIMES THEIR FUNCTIONAL SKILL SET IS LOWER BECAUSE WE HAVEN'T GIVEN THEM DIRECT INSTRUCTION, I WANTED TO EMPHASIZE THAT. THANKS SO MUCH. >> THANK YOU, DENA. ALICIA? >> THANK YOU FOR ALLOWING ME A CHANCE TO COMMENT. I WANT TO ECHO THE FACT THAT THERE WERE -- THERE WAS TWO AMAZING PRESENTATIONS ABOUT SAFETY TODAY AND AT LEAST ONE IF NOT MORE PUBLIC COMMENTS ABOUT SAFETY. I THINK THIS MIGHT BE A TOPIC THAT THE IACC NEEDS TO FURTHER ADDRESS BEYOND INCORPORATING WHAT OTHER PEOPLE HAVE SAID AND WHAT HAS BEEN DONE WITH KEVIN AND AVANTE'S LAW HAS BEEN MIRACULOUS BUT MORE COULD BE DONE AND WE SHOULD CONTINUE THAT DISCUSSION. I WANT TO ALSO POINT OUT A COUPLE COMMENTS THAT WEREN'T ON THE ORAL COMMENTS, THEY ARE ON WRITTEN BUT THERE WAS MORE THAN TWO ABOUT URGENT NEED OF FAMILIES WHO HAVE INDIVIDUALS IN THEIR FAMILY WHO ARE DESPERATELY SEEKING HELP BECAUSE THEY END UP IN A HOSPITAL ENVIRONMENT, THEY DON'T HAVE -- THERE'S NO HOSPITAL TYPE ENVIRONMENT OR THERE ARE VERY FEW OF THEM THAT CAN HELP PEOPLE WITH AUTISM THERE'S PRONGS TO TRAIN HOSPITAL PERSONNEL BUT WE'RE TALKING ABOUT CRISIS PROGRAMS, THERE HAVE BEEN PILOT PROGRAMS TO HELP WITH SEVERE MENTAL HEALTH NEEDS. I DON'T THINK THEY HAVE BEEN PILOTED WITH AUTISM YET BUT THIS COMES THROUGH AUTISM SCIENCE FOUNDATION, SEEING IT ON THE WRITTEN COMMENTS THAT WE OUGHT TO MAYBE THINK ABOUT HAVING FURTHER DISCUSSION ABOUT CRISIS SITUATIONS, HOW TO HANDLING CRISIS SITUATIONS AND WHAT NEEDS TO BE DONE TO MANAGE THEM. >> THANK YOU. I HAVE IVANOVA NEXT. >> I'M PASSIONATE ABOUT MAKING SURE AUTISTICS WOULD LIKE TO EXPLORE THAT THE BIGGEST SUPPORT THEY CAN EXPLORE. IT WOULD BE REALLY COOL IF THESE PROGRAMS FUBBEDDED -- FUNDED NATURE WALKS OR WAYS TO EXPLORE IN THEIR COMMUNITY, GET SWIMMING LESSONS SO THAT THEY CAN SWIM IN WATER SAFELY. MY PARENTS MADE ME GET SWIMMING LESSONS. AFTER THEY ADOPTED ME FROM THE INSTITUTION. AND IT TOOK A COUPLE OF YEARS FOR ME TO LEARN IT BUT I EVENTUALLY LEARNED HOW TO SWIM AND IT'S MADE MY LIFE SO MUCH BETTER BECAUSE I'M ABLE TO BE SAFE IN WATER AND I EVEN GOT TO DO SPECIAL OLYMPICS WITH SWIMMING. PEOPLE WITH INTELLECTUAL DISABILITIES CAN SWIM, WE JUST NEED TO BE GIVEN PROPER SUPPORT TO LEARN HOW TO BE SAFE IN AND WATER AND EXPLORE COMMUNITIES. MANY OF US LOVE TO GO HIKING AND ON ADVENTURES IN THE WOODS AND NATURE, AND EXPLORE THINGS IN NATURE. WE SHOULD GET SUPPORT TO DO THOSE THINGS. THAT'S WHAT I WOULD LOVE RESEARCH IN, SUPPORTING US AND DOING THOSE THINGS SAFELY IN OUR COMMUNITIES AND I'M PASSIONATE ABOUT NOT USING THESE GED DEVICES THAT CAUSE PAIN. WE EXPERIENCE PAIN LIKE ANYONE ELSE. TO MAKE US DO CERTAIN BEHAVIORS IS CRUEL AND UNUSUAL PUNISHMENT WHICH IS IN THE CONSTITUTION, AND SO WE NEED TO SUPPORT THE FDA SUPPORTING THE ENDING OF THOSE DEVICES ON AUTISTIC PEOPLE BECAUSE THEY CAUSE US MUCH PAIN. THANK YOU VERY MUCH. >> THANK YOU FOR THAT PERSPECTIVE. VERY IMPORTANT WE HEAR IT. NEXT TO READ A COMMENT, IF YOU WISH TO MAKE THE COMMENT PLEASE UNMUTE. THANK YOU FOR YOUR POIGNANT MESSAGE. THIS IS IN REFERENCE TO THE FIRST COMMENTER. THANK YOU FOR YOUR POIGNANT MESSAGE AND EMPHASIZEING IMPORTANCE OF SAFETY DATA. I AGREE IN THEORY. IN ACTUALITY I COULD NOT ADVISE MOST INDIVIDUALS OR FAMILIES I'M ACQUAINTED WITH TO REPORT THE FREQUENCY OF THESE EVENTS, DISABLED FAMILIES BEAR A DISPROPORTIONATE BURDEN. WHY WOULD WE GIVE MORE AMMUNITION TO THOSE ALREADY CONVINCED THAT WE ARE INCAPABLE OF MANAGING OUR HOUSEHOLDS? THAT WOULD BE LIKE A STREAM OF BLOOD IN WATER FILLED WITH SHARKS. UNTIL THERE'S BETTER INTEGRATION WHAT PRACTICAL BENEFIT WOULD THERE BE TO AN AUTISTIC PARENT AND NON-AUTISTIC PARENT OR CAREGIVER OF AN INDIVIDUAL ON THE SPECTRUM. THANK YOU FOR THE COMMENT. SORRY ABOUT THE DOG IN THE BACKGROUND. LINDSAY, SAM, SCOTT, JENNY, AND JUDITH ACROSS THE TOP. WE HAVE TIME TO GET TO ALL I THINK. LINDSEY, GO AHEAD. >> I HAD TO PRE-WRITE THIS BECAUSE OTHERWISE I LOSE TRACK. I WANTED TO PROVIDE SOME REMARKS IN RESPONSE TO WRITTEN COMMENTS AND ORAL COMMENTS PRESENTED TO US FOR THIS MEETING AS WELL AS PART OF THE PAST FULL COMMITTEE MEETING. I HAD GONE BACK AND FORTH WHETHER TO EVEN MENTION ANYTHING ABOUT THIS AND I'LL BE HONEST, I AM SOMEWHAT HESITANT AND NERVOUS BUT I THINK IT NEEDS TO BE ADDRESSED. ONE OF THE THEMES THAT HAD POPPED UP WITH ME WHEN I WAS GOING THROUGH ALL OF THE PUBLIC COMMENTS IS UNFORTUNATE REALITY OF TOXICITY AND DIVISION THAT EXISTS WITHIN OUR OWN COMMUNITY. I WANT TO ECHO THE POINT WITH MY OWN OBSERVATIONS AS A COMMITTEE MEMBER AND BRIEF MESSAGE FOR OUTSIDE AUDIENCE IN THE COMMUNITY WHO MAY BE FRUSTRATED OR UPSET THAT THEY ARE NOT FEELING HEARD. SINCE MY FIRST TIME ATTENDING AN IACC FULL COMMITTEE MEETING 11 YEARS AGO I'VE PRESENTED ORAL COMMENTS AND REPEATEDLY EMPHASIZED IMPORTANCE OF INCREASING SUPPORT, ACCESS TO COMMUNICATION IN NON-SPEAKING AUTISTIC PEOPLE. WHICH AFFECTS AT LEAST A THIRD OF AUTISTICS, A POINT THAT JULIA BASCOM MENTIONED IN HER ORAL COMMENTS TODAY. AND I WANT TO KINDLY REMIND OUR AUDIENCE WHO MAY BE TURNING INTO A MEETING ABOUT A COUPLE THINGS TO BE CLARIFIED AS I WAS READING COMMENTS. APPOINTMENT TO A FEDERAL COMMUNITY IS A VOLUNTARY COMMITMENT. WE DO NOT RECEIVE A PAYCHECK FOR OUR TIME AND EXPERTISE IN SERVING THIS APPOINTMENT. MY COLLEAGUES AND I ARE HERE BECAUSE OF THE WELL-BEING OF AUTISTICS AND THEIR FAMILIES OF ALL SUPPORT NEEDS. THEN IT'S THAT IMPORTANT TO US. I CAN'T SPEAK FOR THE EXPERIENCES OF MY OTHER AUTISTIC COLLEAGUES WHO ARE CURRENTLY SERVING OUR HAVE SERVED IN THE PAST, I KNOW THAT MY ABILITY TO PERFORM EFFECTIVELY IN THIS WORK IS DIFFICULT WHEN I RECEIVE HURTFUL COMMENTS AND ATTACKS FROM PEOPLE AND THEY DON'T BELIEVE I UNDERSTAND THE IMPORTANCE OF VALIDATING AUTISTICS, WHAT COMPLEX OR HIGH SUPPORT NEEDS. I'M NOT THE ONLY ONE WHO HAS EXPERIENCED THIS. THIS IS NOT ABOUT IDENTIFYING OR POINTING FINGERS. WHEN YOU GET TO THE CORE, WHO IS NOT RELEVANT. BUT ON BEHALF OF THE AUTISTIC MEMBERS OF OUR COMMITTEE, I WOULD LIKE TO KINDLY ASK EACH OF YOU TO PLEASE TAKE A MOMENT TO LEARN MORE ABOUT A PERSON'S STORY BEFORE YOU MAKE YOUR JUDGMENT. I UNDERSTAND LIFE CAN BE CHAOTIC AND CONFLICTING, I CAN APPRECIATE HOW EASY IT CAN BE TO DEVELOP OUR OWN CONCLUSIONS, AND EXPRESS ANGER AND ADDITIONAL TIME IT CAN TAKE TO LEARN ABOUT A PERSON'S BACKGROUND OR FAMILY STORY INVOLVING AUTISM. ESPECIALLY IF YOU'RE NOT FEELING HEARD. BUT IT'S REALLY, REALLY IMPORTANT TO LEARN ABOUT OTHER PEOPLE. FOR EXAMPLE, IF YOU HAD TAKEN SOME TIME TO UNDERSTAND MY OWN BACKGROUND, YOU WOULD KNOW THAT I ALSO HAVE AN AUTISTIC BROTHER WITH COEXISTING INTELLECTUAL DISABILITY WHO IS NON-SPEAKING, DOES NOT USE AAC, HAS LIVED IN A GROUP HOME SINCE 16 YEARS OLD AND TO WHOM I HAVE DEDICATED A LOT OF MY CHILDHOOD TOWARDS HELPING MY PARENTS TAKE CARE OF HIS NEEDS, WITH LOVE AND PATIENCE AND SCARS TO PROVE IT. YOU WOULD KNOW AT TIMES OUR EXPERIENCE AS GROWING UP INVOLVED TRAUMATIZING INCIDENTS FOR MY FAMILY AS WELL AS FOR MY BROTHER. HE IS A SIGNIFICANT MOTIVATOR OF MY ADVOCACY EFFORTS TO ENSURE HAPPINESS AN SAFETY OF ALL AUTISTICS INCLUDING AUTISTICS WITH HIGH SUPPORT NEEDS. I AM MINDFUL THAT EVEN THOUGH I AM AUTISTIC MYSELF, I'M IN A POSITION OF PRIVILEGE. I CAN APPRECIATE AND UNDERSTAND WHY ONE WOULD BE QUICK TO JUDGE AND ASSUME MY LACK OF UNDERSTANDING OF THE DIVERSE TESTIFY OF NEEDS OF AUTISTIC INDIVIDUALS BASED ON MY EXPERIENCE AND SPEECH. BY SAYING I OR SOME OF MY COLLEAGUES IN OUR COMMITTEE HAVE, QUOTE, NEVER SEEN A TRULY AUTISTIC PERSON OR, QUOTE, HIJACKED A DIAGNOSIS AND MADE AN EXPLETIVE OR HAVE NO REQUESTED -- NO IDEA WHAT IT IS YOU'RE PERSONALLY OFFENDING ME AND INVALIDATING EXISTENCE OF MY OWN BROTHER, ONE OF THE MOST PORN PEOPLE OF MY LIFE, DOING THE VERY SAME YOU WERE AFRAID WE ARE DOING TO YOU AND YOUR LOVED ONES. WE MAY HAVE OUR DIFFERENCES AND OUR EXPERIENCES AND OUR OPINIONS, BUT I THINK IT'S SAFE TO SAY WE'RE ALL IN AGREEMENT THAT NONE EVER US ARE ARE OR LOVED ONES WANT TO FEEL INVALIDATED. PLEASE OPEN YOUR HEARTS TO THE POSSIBILITY THAT WE AS COMMITTEE MEMBERS ARE HERE TO SUPPORT YOU AND EVERY PERSON ON THE AUTISM SPECTRUM, AND WE ARE ALL CONTINUING TO LEARN TOGETHER. THAT'S ALL I HAVE TO SAY AT THIS TIME. >> THANK YOU. THAT MUST HAVE BEEN DIFFICULT BUT I APPRECIATE IT. SAM, SCOTT, JENNY, JUDITH. >> HELLO. SO I WANTED -- SINCE WE'RE STILL TALKING ABOUT SAFETY AND I WANTED TO CONNECT IT BACK TO SOME OF THE DISCUSSION THAT UNFORTUNATELY GOT CUT A BIT SHORT, ONE OF THE THINGS I WAS REALLY HOPING TO SAY AND I WOULD LOVE TO BE ABLE TO CONTACT THE PRESENTER AS WELL TO GIVE HER THIS FEEDBACK BUT I REALLY APPRECIATED THE EFFORT THAT WAS BEING MADE TO CONNECT WITH A LOT OF DIFFERENT STAKEHOLDERS ON TRACKING DEVICES FOR THE AVANTE'S LAW WORK GROUP BUT THAT ABSOLUTELY HAS TO INCLUDE AUTISTIC PEOPLE THEMSELVES IN THE WORK GROUP AND I DIDN'T HEAR THEM BEING MENTIONED. IN PARTICULAR, WE HAVE A LOT OF PEOPLE IN OUR MEMBERSHIP WHO HAVE BEEN LABELED WITH WANDERING BEHAVIORS IN THE PAST, AND HEARING FROM THEM ABOUT WHAT KINDS OF INTERVENTIONS HURT, HELP, AND HOW TO SAFEGUARD THEIR RIGHTS WHILE TRYING TO ENSURE SAFETY WOULD BE REALLY, REALLY HELPFUL. IT'S ONE UNFORTUNATE ISSUE WE'RE RUNNING INTO IS THAT A LOT OF THESE TRACKING DEVICES ARE BEING MARKETED BY PRIVATE COMPANIES AND ABSOLUTELY ANYONE CAN BUY THEM AND USE THEM TO TRACK LOCATION OF ANOTHER PERSON WHO MIGHT NOT BE CONSENTING. SO THERE'S REALLY QUITE A LOT OF OPPORTUNITY FOR ABUSE AND MISUSE OF THESE DEVICES. WE WANT TO MAKE SURE THAT THAT'S HEARD WHEN WE'RE MAKING FEDERAL STANDARDS FOR HOW THEY ARE USED BOTH PRIVATELY AND BY LAW ENFORCEMENT. >> WE STILL HAVE THE SPEAKERS FROM EARLIER WITH US I BELIEVE. COULD YOU RESPOND? I WOULD APPRECIATE, NUMBER ONE, ON SAM'S QUESTION REGARDING WHETHER INDIVIDUALS ON THE SPECTRUM ARE INCLUDED IN ADVISORY GROUPS AS YOU CONSIDER WHAT TO DO FORWARD AND SECOND CLARIFYING SOME ABOUT WHAT ROLES THAT YOU HAVE WITH REGARD TO MISSING CHILDREN VERSUS MISSING ADULTS. JOY, I SAW YOU POP UP IF YOU WANT TO SAY A COMMENT WITH REGARD TO EITHER OF THOSE TWO ISSUES. >> SURE. AS AN ORGANIZATION OUR FOCUS IS ON MISSING CHILDREN. THERE ARE CERTAIN TIMES WHERE WE ARE ABLE TO PROVIDE ASSISTANCE TO FOLKS WHO ARE UNDER THE AGE OF 21 PARTICULARLY IF WE'RE WORKING WITH LAW ENFORCEMENT AND THERE'S A CHILD MISSING FROM CARE. I WILL ALSO JUST SAY AS AN ORGANIZATIONAL STANDPOINT WE DON'T -- I'LL SAY THIS. OUR FOCUS IS ON THE PRO-ACTIVE APPROACHES THAT WE CAN UTILIZE IN NON-TRACKING SITUATIONS BECAUSE FROM WHAT WE'VE LEARNED AS AN ORGANIZATION AND WE'RE STILL LEARNERS WE DON'T WANT TO TRACK TO A DEATH OF A CHILD. WE CONSIDER IT A TOOL IN THE TOOLBOX THAT'S AVAILABLE BUT SOMETHING THAT'S LAST RESORT AND ALSO I KNOW KRISTIE WILL PROBABLY SPEAK TO THIS, A LOT OF LEARNING WE'VE DONE AS AN ORGANIZATION IS EVERYTHING THAT SAM JUST DESCRIBED, AND SO IN THE NCMEC PERSPECTIVE WE'RE FOCUSED ON OTHER WAYS THAT WE CAN PREVENT MISSING INCIDENTS AND ADDRESS MISSING INCIDENTS, DEFINITELY -- AND I -- >> I WANT TO CLARIFY. PEOPLE ON THESE TASK FORCES MIGHT BE ADULTS, I WANT THEM TO BE ABLE TO ALSO SPEAK TO THEIR EXPERIENCES AS CHILDREN WHEN THEY WERE LABELED WITH WANDERING AND THERE CAN CERTAINLY BE SITUATIONS WHERE THESE TRACKERS CAN BE USED EVEN IF BEING USED ON CHILDREN RATHER THAN ADULTS, FOR EXAMPLE, WITH A CONTESTED CUSTODY SITUATION, WHEN USED TO LISTEN IN ON PRIVATE CONVERSATIONS OF A TEENAGER, ET CETERA. >> FAIR ENOUGH. KRISTIE, I WONDER IF YOU MIGHT RESPOND. >> SURE. AS FAR AS THE WORKING GROUP THAT WE HAD, LOCATIVE TECHNOLOGY WORKING GROUP WE JUST HAD, I WOULD SAY UNFORTUNATELY NO, WE DID NOT HAVE THAT PERSPECTIVE AND THAT WAS ONE OF THE KEY TAKEAWAYS THAT CAME OUT OF THAT DISCUSSION WAS THAT WE NEED TO MAKE SURE THAT WE'RE INCLUDING THIS PERSPECTIVE OF FOLKS AS YOU MENTIONED. AND SO AS WE THINK ABOUT THE CONVENING -- BIGGER CONVENING SPONSORED BY NIJ IN SPRING OF 2022 THAT'S WHERE WE CAN MAKE SURE THAT WE HAVE THAT PERSPECTIVE OF FOLKS WITH AUTISM, CHILDHOOD EXPERIENCE WITH AUTISM, LIVED EXPERIENCES. WE CAN MAKE SURE WE HAVE THOSE FOLKS REPRESENTED WHEN WE HAVE THAT BIGGER DISCUSSION IN 2022. I THINK ALSO, YOU KNOW, AS WE LOOK AT WAYS LIKE EVERY YEAR WE PUT FUNDING OUT UNDER THE KEVIN AND AVANTE PROGRAM, AND I HAVE AN OPPORTUNITY TO REWRITE THE SOLICITATION FOR FUNDING AND ADD THINGS TO THE SOLICITATION FOR FUNDING. SO JUST LISTENING ON THE DISCUSSION THAT YOU ALL HAVE BEEN HAVING I'M ALREADY THINKING OF WAYS MAYBE WE CAN ENHANCE THE WORK OF WHAT WE'RE PUTTING IN THOSE CATEGORIES THAT PEOPLE CAN APPLY FOR FUNDING FOR. I REALLY LIKE THE IDEA OF, YOU KNOW, SWIM CLASSES, AS SOMETHING DOING PRO-ACTIVE THINGS THAT WE CAN APPLY FUNDING FOR. I THINK THAT WE LOOK TO OUR -- THE ORGANIZATIONS THAT WE FUND UNDER CATEGORY ONE, UNDER PRO-ACTIVE PREVENTION PROGRAMMING. WE HOPE THEY HAVE THAT DIVERSE PERSPECTIVE AMONGST BOARD MEMBERS IN THEIR ORGANIZATION, BUT I THINK WE CAN BE MORE INTENTIONAL IN OUR WORDING AND HOW WE PUT THINGS OUT TO MAKE SURE WE'RE GETTING THAT VOICE. UNFORTUNATELY, I DON'T THINK WE'VE BEEN THAT INTENTIONAL WHEN IT COMES TO MAKING SURE WE'RE HAVING THE VOICE OF PEOPLE WITH THOSE LIVED EXPERIENCES REPRESENTED. >> THANK YOU. KRISTIE. SCOTT? >> THANK YOU, DR. GORDON. I APPRECIATE THE COMMENTS THAT WERE SHARED IN TERMS OF WRITTEN PUBLIC AND ORAL. I WANT TO EMPHASIZE MY APPRECIATION FOR MY FEDERAL COLLEAGUES OVER AT FDA IN TERMS OF I KNOW THEY ARE LIMITED IN WHAT THEY CAN SAY BUT BECAUSE OF THE LEGAL PROCESS BUT I APPRECIATE THE WORK THAT THEY WENT THROUGH TO ADOPT IN TERMS OF RULEMAKING REGULATION PROCESS WITH FOLKS THAT ARE HARMFUL TO PERSONS, I WOULD ARGUE IS A HUMAN RIGHTS VIOLATION IN TERMS OF THE ELECTRIC SHOCK WITH THAT. I HOPE TO UNDERSTAND THAT WE HAVE THE APPRECIATION IN THE REST OF THE FEDERAL GOVERNMENT AND I'M SURE FOLKS OUTSIDE THE GOVERNMENT ARE APPRECIATIVE AS THEY ARE CONTINUING TO WORK IN THIS COURT CASE TO TRY TO IMPROVE THE OUTCOME HERE IN TERMS OF BANNING THOSE DEVICES. I APPRECIATE SOME COMMENTS AND DISCUSSIONS ON FULL ACCESS TO COMMUNICATION AND SUPPORTING THE BROADER FOCUS WITH HEALTH AND SAFETY TO MAKE SURE AUTISTIC PEOPLE HAVE -- PERSPECTIVE IS INCLUDED AND THAT INCLUDES MENTIONING WHAT ARE SAFETY SKILL DEVELOPMENT FOR SWIMMING SKILLS BECAUSE I THINK SOMETIMES IT'S NOT MENTIONED AS MUCH AS IT SHOULD THAT IF WE HAD FUNDING WE WOULD HAVE FEWER FOLKS WHO ARE DROWNING AND I THINK THAT'S NOT JUST AUTISTIC PEOPLE, WE NEED TO DO A BETTER JOB WITH HEALTH AND SAFETY WITH WATER SAFETY SKILLS THAT FOLKS MAY KNOW THAT THERE ARE FOLKS FROM DIVERSE AND UNDERREPRESENTED RACIAL AND ETHNIC GROUPS ARE LESS LIKELY TO LEARN THE SKILLS. IT'S A LARGE PROBLEM HISTORICALLY AS FAR AS THE ISSUES THERE THAT I THINK WE CAN DO A BETTER JOB OF PROMOTING AREAS OF HEALTH AND WELLNESS IN THOSE FOCUSES FOR ALL AND BROADER LIVED EXPERIENCE. THEN ALSO APPRECIATE SOME COMMENTS MENTIONED AS FAR AS THE AMERICAN INDIAN POPULATION, AS FAR AS DISPARITIES THAT ARE THERE AND DEFERRING TO COLLEAGUES AT HHS AS FAR AS INDIAN HEALTH SERVICE, THAT'S THEIR JURISDICTION BUT I TAKE IN MIND A LOT ON THE LINGUISTIC AND CULTURAL COMPETENCE WE HAVE TO DO A BETTER BEYOND AND I THINK SUPPORTING GROUPS AND OTHER DEVELOPMENTAL DISABILITIES AND THAT'S PART OF OUR CHARGE WITH DIVERSITY, EQUITY, AND INCLUSION AND ACCESSIBILITY, IT ALIGNS WITH PRIORITIES WE HAVE NOW UNDER THE CURRENT ADMINISTRATION. AND SO I'M VERY GLAD FOLKS WERE EMPHASIZING THAT AND EMPHASIZING SUPPORTS THAT REAL FAMILIES NEED RIGHT NOW AND INDIVIDUALS NEED RIGHT NOW WHERE THEY ARE CONTINUING BARRIERS, WE CAN DO BETTER AS FAR AS RESEARCH AND ENHANCEMENT OF SUPPORTS AND SERVICES TO IMPROVE QUALITY OF LIFE AND ACCESS AND OPPORTUNITY AND MAKE SURE THAT THE VOICE OF AUTISTIC PEOPLE AND FAMILY MEMBERS IS WELL INTEGRATED INTO THESE CONVERSATIONS AND ALL THESE AREAS THAT WE'RE TALKING ABOUT AND THESE ARE REAL PEOPLE'S LIVES AND I THINK WE SHOULD NEVER LOSE SIGHT OF THAT ON THE COMMITTEE THAT I THINK ESPECIALLY WITH FOCUS ON RESEARCH THAT FOLKS FORGET ABOUT REAL CHALLENGES THAT FOLKS ARE LIVING ON A REAL DAY-TO-DAY BASIS AND SOMETIMES THEIR VOICES ARE NOT BEING HEARD. THEY ARE NOT BEING FOCUSED AS MUCH IN TERMS OF RESEARCH AND PRACTICES AND SERVICES AND SUPPORTS AND I THINK THAT GIVES IT A LOT OF OPPORTUNITY I THINK FOR US TO INFORM WHAT THE COMMITTEE I THINK IS GOING TO DO AS FAR AS STRATEGIC PLAN IN TERMS OF HEEDING THESE FOCUSES AND MAKING SURE THERE'S COVERAGE IN THE PLAN ITSELF. THANKS. >> THANK YOU, SCOTT. WE HAVE A NUMBER OF FOLKS WHO WANT TO COMMENT. WE HAVE A LITTLE BIT MORE TIME BUT I'M GOING TO ASK EACH OF YOU TO KEEP YOUR REMARKS BRIEF SO WE CAN GIVE EVERYBODY A CHANCE. JENNY? >> THANK YOU TO SPEAKERS AND PUBLIC COMMENTS. I WILL BE BRIEF. I WANT TO ECHO SOME POINTS SCOTT BROUGHT UP ABOUT SWIMMING BEING AN IMPORTANT FOCUS BECAUSE OF DROWNING INCIDENCES IN AUTISTIC INDIVIDUALS. BUT I WANT TO ALSO BRIEFLY MENTION IN CASE ANY OF THE PUBLIC LISTENERS OR VIEWERS DIDN'T CATCH THE FIRST MEETING THAT WE HAD BACK EARLIER IN THE SUMMER IS THAT I'M ALSO A PARENT TO TWO AUTISTIC CHILDREN, WHO CANNOT SWIM, AND I SOUGHT COMMUNITY HELP TO FIND INSTRUCTORS TRAINED TO WORK WITH AUTISTIC CHILDREN. AND IT WAS VERY DIFFICULT TO FIND ANY SWIM INSTRUCTORS WHO CAN WORK SPECIFICALLY WITH MY CHILDREN'S NEEDS. AND SO I ENDED UP TEACHING MY CHILDREN HOW TO SWIM MYSELF. AND I CANNOT SWIM. BUT I HAVE LEARNED TECHNIQUES OF SWIMMING ENOUGH SO I CAN TEACH MY CHILDREN. AND BECAUSE I'M THEIR PARENT, I KNOW THEIR NEEDS AND I KNOW WHAT, YOU KNOW, THEIR LIKES AND DISLIKES ARE. SO A LOT OF THESE CONCERNS WITHIN FAMILIES DO FALL HEAVILY ON CAREGIVERS AND PARENTS, AND I KNOW MUCH OF THE CONVERSATIONS HAVE BEEN CENTERED ON AUTISTIC INDIVIDUALS AS WELL AS RESEARCH BEING FOCUSED ON AUTISTIC INDIVIDUALS. BUT I ALSO WANT TO ADD A PLUG TO REMEMBER FAMILY MEMBERS AND CAREGIVER SUPPORT BEING HIGH PRIORITY BECAUSE A LOT OF THESE NEEDS DO FALL ON FAMILY MEMBERS AND SPECIFICALLY FOR AUTISTIC FAMILY MEMBERS AND CAREGIVERS WHO THEY THEMSELVES NEED SUPPORT, AND THEY ARE NOT GETTING THEIR OWN SUPPORT AS WELL AS SUPPORT FOR THEIR CHILDREN. AND AS WE KNOW THERE ARE DISPROPORTIONATE NUMBER OF RACIAL MINORITY FAMILIES WHO AREN'T GETTING THESE SERVICES AND SO I DO APPRECIATE SCOTT'S COMMENT ABOUT MAKING THAT A PRIORITY SO BROADLY WHAT WE MEAN WHEN WE SAY DEI WHAT DOES DIVERSITY ACTUALLY MEAN AND TO DEFINE THAT. I BRING AN EXAMPLE OF NON-NATIVE ENGLISH SPEAKING FAMILIES, SO BILINGUAL FAMILIES WHO MAY NOT UNDERSTAND ENGLISH BUT SERVICES THAT MAY BE AVAILABLE TO THEM ARE MOSTLY IN ENGLISH AND THEY NEED TRANSLATORS TO HELP UNDERSTAND WHAT THESE SERVICES ARE ACTUALLY DOING FOR THEM AND THEIR CHILDREN. SO I'LL LEAVE MY COMMENT THERE. THANK YOU. >> THANK YOU VERY MUCH. JUDITH COOPER. >> GOOD AFTERNOON, EVERYONE. I AND MY INSTITUTE DIRECTOR ARE BOTH HERE ON THE COMMITTEE. WE'RE ARE THE NATIONAL INSTITUTE ON DEAFNESS AND COMMUNICATION DISORDERS. TWO THINGS RELATED TO SOME COMMENTS THAT WE HEARD TODAY ABOUT COMMUNICATION AND CHALLENGES FOR SOME INDIVIDUALS ON THE SPECTRUM. FIRST WE HAVE A PROGRAM ON AUGMENTIVE AND ALTERNATIVE COMMUNICATION. NIDCD HAS BEEN A LEADER OVER FIVE TO TEN YEARS ENCOURAGING RESEARCH ON MINIMALLY VERBAL INDIVIDUALS WHERE AUTISM. WE HAVE A NUMBER OF PROJECTS THAT FOCUS ON THAT. SO I JUST WOULD ENCOURAGE WE WERE LISTENING CAREFULLY TO COMMENTS WE HEARD AND WANT TO CONTINUE THAT DIALOGUE. IF YOU HAVE OTHER COMMENTS, THOSE WHO SPOKE ON THIS ISSUE AND IMPORTANCE OF IT, IF YOU WOULD SEND THOSE COMMENTS TO SUSAN DANIELS AND SHE CAN SEND THEM TO DR. TUCCI AND I AND WE CAN SHARE THOSE WITH THE STAFF AND FIGURE OUT PERHAPS NEXT STEPS. THANK YOU. >> THANK YOU, I'LL POINT OUT THAT AS WE THINK ABOUT SOME OF THE COMMENTS REGARDING WHAT WE ARE OR ARE NOT DOING FROM RESEARCH PERSPECTIVE OR INVESTING FROM CARE PERSPECTIVE AS WELL, WHEN WE THINK ABOUT THE BALANCE OF WHERE THINGS SHOULD BE I THINK IT WILL BE IMPORTANT FOR THIS COMMITTEE TO BECOME ACQUAINTED WITH THE ACTUAL DATA AND PORTFOLIO THAT WE ACTUALLY HAVE AT THE NIH AND ELSEWHERE FROM RESEARCH AND CARE PERSPECTIVE, THERE ARE WERE INACCURACIES IN PUBLIC COMMENT AND NUMEROUS EXCELLENT POINTS SO WE WANT TO MAKE SURE THE COMMITTEE IS APPRAISED AS WE MOVE ALONG WITH THE STRATEGIC PLAN PROCESS OF WHAT IS GOING ON. WE ARE JUST ABOUT OUT OF TIME. THERE ARE THREE MORE PEOPLE WHO WOULD LIKE TO COMMENT. I'M GOING TO RESTRICT IT TO THOSE THREE. AND THEN WE WILL MOVE TO THE NEXT PROGRAM AND I APOLOGIZE IF YOU'RE WAITING, WE WERE SUPPOSED TO START AT 3:00. WE'LL GET STARTED AT 3:10 IS MY GUESS. >> HELLO. I WANT TO SAY I WAS AT THE INSTITUTIONALIZED FOR THE FIRST FIVE AND A HALF YEARS OF MY LIFE, NON-SPEAKING. I DIDN'T UNDERSTAND MANY THINGS. I DID NOT UNDERSTAND EVEN MY OWN NAME. AND IT WAS NOT UNTIL I WAS TAUGHT THINGS AND PEOPLE REALLY DID ONE ON ONE SUPPORT WITH ME THAT I STARTED TO LEARN THINGS AND STARTED TO GAIN ABILITIES AND BEING ABLE TO BE IN MY COMMUNITY. IT'S BECAUSE PEOPLE DIDN'T THINK THAT I COULD NOT LEARN. THIS IDEA THAT PEOPLE WITH INTELLECTUAL DISABILITIES CAN'T LEARN IS A VERY DANGEROUS IDEA AND LEADS TO US BEING HARMED AND SO I THINK IT'S IMPORTANT WE GET THE SUPPORT TO LEARN AND GET TEACHERS EQUIPPED, NEED TO HELP PARENTS TEACH CHILDREN THAT WE GROW JUST LIKE ANYONE ELSE AND WE SHOULD BE GIVEN A CHANCE AND DIGNITY TO LEARN HOW TO SWIM, TO LEARN HOW TO CROSS THE STREET, IF WE NEED SUPPORT, IF WE NEED ONE-ON-ONE SUPPORT TO CROSS THE STREET WE SHOULD BE GIVEN THAT SUPPORT TO CROSS THE STREET. WE SHOULDN'T BE SHUT AWAY IN AN INSTITUTION JUST BECAUSE WE CAN'T -- BECAUSE WE'RE STRUGGLING TO LEARN SOMETHING. I STRUGGLED TO READ AND THE SCHOOL SAID YOU'LL NEVER LEARN HOW TO READ BUT MY MOTHER, SHE SAID NO, I WON'T BELIEVE THAT AND MY MOTHER SAT IN THE HALLWAY WITH ME EVERY DAY IN THE SCHOOL AND TAUGHT ME TO READ, TO USE SIGN LANGUAGE, VISUALS, TO USE A DIFFERENT METHOD THAT TEACHERS DIDN'T USE AND I LEARNED HOW TO READ. IT MADE IT TO HAVE ACCESS TO ACADEMIC COURSES, IT'S NOT FAIR TO NOT BE GIVEN THAT ACCESS AND BE DENIED THAT ACCESS TO HAVE TO FIGHT TO BE ABLE TO HAVE ACCESS THAT ANYBODY ELSE WOULD WANT, JUST BECAUSE OF AN I.Q. SCORE, WE NEED TO STOP THAT AND WE NEED TO LOOK AT PEOPLE AS HUMAN BEINGS WHO WANT TO LEARN AND WE NEED TO MAKE SURE EVERYONE HAS THE RIGHT TO LEARN AND THAT WE ALL HAVE THE RIGHT TO GROW UP. WE ARE NOT MENTALLY CHILDREN. AUTISTICS WITH INTELLECTUAL DISABILITIES GROW UP LIKE EVERYONE ELSE AND WE NEED TO LEARN HOW TO BE SAFE AND WE NEED TO LEARN IF WE WANT TO HAVE ONE EVER THESE DEVICES, GPS DEVICES, WE SHOULD BE TAUGHT, INFORMED CONSENT, WE SHOULD BE TOLD WHAT THE DEVICE DOES AND WHAT WE WANT IT TO DO AND WHAT WE DON'T WANT IT TO DO AND IF WE WANT TO GO EXPLORE COMMUNITY WE SHOULD HAVE SOMEBODY HELP US AND SUPPORT US IN THE COMMUNITY TO EXPLORE. IF I WANT TO GO ON A WALK NEAR A RIVER, BUT I NEED SUPPORT, HAVE SOMEBODY GO WITH ME AND HELP ME EXPLORE. DON'T JUST TAKE AWAY THAT RIGHT FOR ME TO EXPLORE. THAT'S BAD. AND THAT DOESN'T HELP AN AUTISTIC PERSON FEEL LIKE THEY ARE ALLOWED IN THEIR COMMUNITY AND WE SHOULD ALL BE ALLOWED IN YOUR COMMUNITY. IF WE NEED EXTRA SUPPORT FOR THAT, WE SHOULD BE GIVEN THAT. IT'S OUR CONSTITUTIONAL RIGHT. THANK YOU. >> THANK YOU, APPRECIATE THE COMMENT AND YOUR PASSION. JOY? >> THERE'S SO MANY WONDERFUL FOLKS AND ADVOCATES ON HERE, I'M HONORED TO BE HERE AND SO MANY FOLKS MENTIONED SWIMMING LESSONS, FORGIVE ME, MY FOCUS WAS ON ONLINE SAFETY BUT THIS IS AN ISSUE THAT WE'RE GOING TO BE TALKING ABOUT WITH OUR PARENTS. I WANT TO RAISE THE FACT THE Y HAS DONE INCREDIBLE WORK WITH INCLUSIVE SWIMMING LESSONS, SOMETHING WE'LL BE HIGHLIGHTING IN THE PRESENTATION AND I LOVE KRISTIE BECAUSE SHE THINK ABOUT WAYS WE CAN RAISE MONEY AND FUNDS, SO THAT'S DEFINITELY SOMETHING WE CAN HOPEFULLY CONTINUE TO PARTNER AND ADDRESS THAT ISSUE BECAUSE NOT JUST FOR SAFETY BUT RESILIENCY FOR FOLKS THAT SCOTT TALKED ABOUT. THANK YOU FOR BRINGING THAT UP. WE'LL CONTINUE TO ADVOCATE. I REACHED OUT TO DR. PIERCE TO CONNECT WITH CRYSTAL BUT WANT TO DO MORE WORK IN THE AREA. WE HAVE A TRIBAL FELLOWSHIP OUT THERE. HOPEFULLY WE CAN CONNECT TO FOLKS ONLINE, PLEASE, I WANT TO CONNECT WITH YOU AFTER THIS CALL. THANKS FOR RAISINGS THOSE ISSUES. >> AND FINAL COMMENT TO READ. I'LL READ WORD FOR WORD. I'M NOT CERTAIN HOW TO COMMUNICATE THIS IN A SENSITIVE MANNER, SHE WRITES, BUT I WILL CRY. CAN YOU SHARE THE MECHANISMS USED TO DISTINGUISH A POTENTIAL TRAFFICKING VICTIM FROM INDIVIDUAL WHO MIGHT BE ENGAGED IN CONSENSUAL SEX WORK AND/OR TRANSACTIONAL SEX OF THEIR OWN VOLITION? FOR A VARIETY OF REASONS, FOR SIDESSABLE IT MIGHT BE A MEANS OF SURVIVAL IN A WORLD WITH NOT A GREAT DEAL OF VIABLE EMPLOYMENT AND/OR FINANCIAL OPTIONS ACCESSIBLE. THIS IS ESPECIALLY SO FOR GENDER DIVERSE, QUEER, AUTISTIC INDIVIDUALS AS WELL AS THOSE WITH OTHER INTERSECTIONAL MARGINALIZATIONS. I DON'T KNOW IF KRISTIE OR JOY CARE TO COMMENT ABOUT THOSE POINTS THAT WERE RAISED. >> I'LL ANSWER FROM THE NCMEC PERSPECTIVE, WASN'T TO BE CLEAR I'M NOT IN THE EXPLOITED CHILDREN DIVISION SO I DON'T WANT TO ANSWER ON BEHALF OF MY COLLEAGUES WHO ARE EXPERTS AND WOULD MAKE THOSE DETERMINATIONS. BUT I WILL ENCOURAGE YOU TO E-MAIL ME SO THAT I CAN GET YOU CONNECTED WITH THE RIGHT FOLKS SO WE GET THE RIGHT ANSWERS AND INFORMATION AND ALSO THE FEEDBACK THAT YOU'RE SHARING SO WE CAN INFORM OUR OWN PROGRAMMING. >> AND I SEE COMMERCIAL SEX WORK, NOT CONSENSUAL, I READ THE ABBREVIATION WRONG. AND I SAW A THUMBS UP WHEN YOU INDICATED THAT SHE SHOULD CONTACT YOU AND YOU CAN CONNECT WITH PEOPLE IN YOUR ORGANIZATION. I THINK THAT WILL HAVE TO DO FOR THE COMMENTS ON THE PUBLIC COMMENTS. AND I'M GOING TO TURN IT BACK OVER TO SUSAN. >> I'D LIKE TO MAKE A BRIEF COMMENT AS WELL JUST REGARDING ALL THESE COMMENTS ON SWIMMING LESSONS, I WOULD BE HAPPY TO CONNECT JOY AND KRISTIE WITH THE CDC PROGRAM ON WATER SAFETY. THEY DO HAVE A PROGRAM AND I WAS INQUIRING OF THE CDC AND THEY SAID THEY DON'T NECESSARILY WORK ON AUTISM BUT MAYBE WE CAN BRING THEM INTO THE CONVERSATION TO HELP TOO. >> AND GIVEN THE LATENESS OF THE HOUR, WE WERE SCHEDULED TO START THE NEXT SESSION AT 3:00, WE WERE SCHEDULED FOR A FIVE-MINUTE BREAK. WHAT WE SHOULD DO IS MOVE RIGHT INTO THAT SESSION. ACKNOWLEDGE PEOPLE MIGHT NEED A FEW MINUTES FOR BIOLOGY OR MENTAL HEALTH AND SO IF YOU NEED TO DO SO TAKE IT NOW. YOU'LL MISS SOME OF THE INTRODUCTION. OR TAKE IT WHEN YOU NEED IT DURING THE NEXT HOUR. SO IT'S MY PLEASURE TO INTRODUCE THIS NEXT SESSION ON THE NATIONAL AUTISM INDICATORS REPORT WITH REGARD TO MENTAL HEALTH. WE'LL BE HEARING FROM ALREADY LINDSAY SHEA AND JESSICA RAST FROM DREXEL UNIVERSITY FOLLOWED BY TEAL BENEVIDES AND STEPHEN SHORE. JESSICA RAST IS A RESEARCH ASSOCIATE IN THAT AUTISM INSTITUTE ALSO AT DREXEL, THEY WILL BE SPEAKING FIRST. AND THEN TEAL IS ASSOCIATE PROFESSOR AT AUGUSTA UNIVERSITY IN GEORGIA, STEPHEN SHORE ASSISTANT PROFESSOR AT ADELPHI UNIVERSITY IN NEW YORK. AND SORRY, DREXEL IS IN PENNSYLVANIA. DR. SHEA, PLEASE BEGIN. >> I'M GOING TO PASS TO MY COLLEAGUE JESSICA FOR THE FIRST SLIDE. >> I'M JESSICA, HAPPY TO BE HERE. YOU GAVE A GREAT OVERVIEW OF THE TITLE SLIDE SO I DON'T NEED TO REPEAT. PRIORITIES AND POTENTIAL FOR ARM AND MENTAL HEALTH RESEARCH IS THE TITLE, HOPEFULLY BY THE END YOU'LL AGREE WITH THE TITLE. I WILL START. THANK YOU FOR THE INTRODUCTION. I DON'T NEED TO REPEAT. I WORK AT DREXEL, LIFE COURSE OUTCOMES RESEARCH PROGRAM. I WILL SPEND MY INTRODUCTORY FEW SECONDS TO ASSERT MENTAL HEALTH IS VITAL COMPONENT AND FOLLOWING MENTAL HEALTH CARE IS INTEGRAL PART OF HEALTH CARE FOR ALL PEOPLE. >> THANKS, JESSICA. THANK YOU TO THE IACC FOR HAVING ALL OF US AND FOCUS ON THIS IMPORTANT ISSUE. WE APPRECIATE THE TIME AND ATTENTION TO WALK THROUGH OUR RESEARCH AND HAVE A DISCUSSION AS WELL. I'M HERE TODAY BECAUSE I'M IN PART DIRECTOR OF THE POLICY AND ANALYTICS CENTER AND THE GOAL IS TO SEEK TO UNDERSTAND HOW THE HEALTH CARE SYSTEM CAN IMPROVE ACCESS AND SERVICES FOR AUTISTIC INDIVIDUALS. AND THAT'S DRIVEN BY SERVICE EXPERIENCES AND NON-AUTISTIC INDIVIDUALS ACROSS THE EXPERIENCES THAT THEY HAVE, TYPES OF SERVICES THEY USE AND HOW WE CAN BEST SUPPORT PROFESSIONALS WHO DELIVER THEIR SERVICES . THE REPORT YOU'LL HEAR ABOUT TODAY WAS AUTHORED BY JESSICA RAST, ONE PRODUCT FROM A FUNDED INITIATIVE THAT WE HAVE THROUGH HRSA, TRANSITION RESEARCH PROJECT, WE HAVE SEVERAL COMPONENTS OF ATRP AS WE CALL IT, ONE OF THOSE IS ALSO THE TRANSITION ODYSSEY, A QUALITATIVE EFFORT TO UNDERSTAND HOW THE TRANSITION TO ADULTHOOD LOOKS AMONG A DIVERSE GROUP OF ADOLESCENCE AS THEY AGE. WHY DO WE DO A REPORT FOCUSED ON MENTAL HEALTH? WE BELIEVE AND HAVE SEEN INITIAL DATA THAT INDICATED THAT MENTAL HEALTH MATTERS IN TRANSITIONS, TRANSITIONS SET THE TONE FOR WHAT HAPPENS NEXT IN LIFE AND BY ADDRESSING, UNDERSTANDING THE NEEDS OF INDIVIDUALS THROUGH THOSE TRANSITIONS WE'RE MORE READILY PREPARED TO SUPPORT, THEY MEAN LIFE CONTINUES ON. MENTAL HEALTH MATTERS IN SYSTEMS BECAUSE OFTEN SYSTEMS ADDRESS CERTAIN SETS OF SYMPTOMS OR ADDRESS CERTAIN DIAGNOSES AND BY UNDERSTANDING HOW THE DATA EMERGE FROM THOSE SYSTEMS WE'RE READY TO SUPPORT IN CHANGING TO MEET NEEDS OF AUTISTIC INDIVIDUALS. MENTAL HEALTH MATTERS IN FAMILIES. FAMILIES ARE IMPACTED AND SEEK TO SUPPORT FAMILY MEMBERS. THESE ARE ALSO COMMON IN THE GENERAL POPULATION, EVEN MORE COMMON AMONG INDIVIDUALS LIVING ON THE AUTISM SPECTRUM. SO UNDERSTANDING MENTAL HEALTH AMONG THIS GROUP, USING LARGE DATA SOURCES HELPS US THINK BACK TO THE SERVICES THAT MAY BE NEEDED AND ENSURE -- WORK TO ENSURE ACCESS. WE KNOW CARE IS COMPLEX. WHEN INDIVIDUALS MAY HAVE MULTIPLE DIAGNOSES OR NEEDS, THEY CAN BE SUPPORTED TO MEET THEIR OWN GOALS. PER THE DISCUSSION WE JUST HEARD WE NEED TO UNDERSTAND THOSE NEEDS AND DRIVE TOWARD THE DELIVERY OF THE SERVICES TO MEET THEM WHERE THEY ARE. JESSICA, I WILL HAND IT BACK TO YOU. >> SO, TODAY I'M GOING TO TALK ABOUT OUR MOST RECENTLY PRODUCED NATIONAL AUTISM INDICATORS REPORT WHICH FOCUSES ON MENTAL HEALTH AND MENTAL HEALTH CARE. THE PURPOSE OF THE REPORT WAS TO CATALOG INDICATORS OF MENTAL HEALTH AND MENTAL HEALTH CARE, HIGHLIGHT AREAS OF NEEDED IMPROVEMENT AND PRACTICE POLICY. THIS REPORT IS A FOLLOW-UP TO A PREVIOUS REPORT THAT CAME OUT, IT'S BEEN OVER A YEAR NOW, THAT WAS FOCUSING ON HEALTH AND HEALTH CARE. AND WE FOUND AUTISTIC CHILDREN SPECIFICALLY HAD HIGH RATES OF MANY MENTAL HEALTH CONDITIONS AND MORE LIKELY TO SEE A MENTAL HEALTH PROVIDER AND TO USE PSYCHOTROPIC MEDICATION THAN THEIR PEERS. WE FOUND WHILE AUTISTIC CHILDREN HAD HEALTH INSURANCE ALMOST ALL HAD HEALTH INSURANCE, FEWER THAN HALF OF PARENTS REPORTED THE COVERED 50% OF THE COSTS. WE START FROM THE IDEA AUTISM IS NOT A MENTAL HEALTH CONDITION. WE GO TO EXAMINE WHY HIGHER RATES OF MENTAL HEALTH MIGHT BE PRESENT IN AUTISTIC PEOPLE FROM GENETIC AND SOCIAL ORIGINS. PARENTS HAVE HIGHER RATES OF ANXIETY AND DEPRESSION THAN PEERS WE ALSO KNOW THAT EXPERIENCES OF ADVERSITY, ISOLATION AND STIGMA MAY PLACE AUTISTIC PEOPLE AT INCREASED RISK FOR MENTAL HEALTH CONCERNS. EMERGING EVIDENCE (INDISCERNIBLE) TO BLEND INTO SOCIAL SITUATIONS IS ASSOCIATED WITH INCREASED DEPRESSION AND ANXIETY IN AUTISTIC ADULTS. AND THERE'S BEEN SOME RESEARCH INTO HEIGHTENED INTOLERANCE OF UNCERTAINTY LEADING TO INCREASED ANXIETY IN AUTISTIC AND NON-AUTISTIC PEOPLE. AND INCREASINGLY PHYSICIANS NOTING STIGMA AND LACK OF UNDERSTANDING, ACCOMMODATION, ACCESS TO SERVICES ARE CONTRIBUTED TO MENTAL HEALTH DIFFICULTIES. WE HAVE INFORMATION ABOUT SERVICES, SUPPORTING MENTAL HEALTH REQUIRES ACCESSIBLE AND APPROPRIATE CARE. PROVIDERS IN THE U.S. PLAY KEY ROLE IN IDENTIFYING AND MANAGING MENTAL HEALTH NEEDS. AND THEY ARE FIRST POINT OF CONTACT, WELL POSITIONED TO HAVE A WHOLISTIC PICTURE AND IDENTIFYING EMERGING CONCERNS BUT THEY ARE OFTEN NOT EXPERTS AND HAVE EXPERTISE IN MENTAL HEALTH CARE DIRECTLY ESPECIALLY AS NEEDS ARE COMPLEX. ON THE OTHER SIDE MANY MENTAL HEALTH PROVIDERS ARE INADEQUATELY PREPARED TO CARE FOR AUTISTIC PATIENTS. HALF HAD NO EXPERIENCE, AND MAY LACK UNDERSTANDING OF AUTISM IN GENERAL AND HOW AUTISTIC PEOPLE EXPERIENCE AND COMMUNICATE SPECIFICALLY IN REGARD TO MENTAL HEALTH ISSUES. FURTHER THEY MAY HOLD BIASED ASSUMPTION ABOUT MEANINGFUL PROGRESS AND IMPROVING MENTAL HEALTH. WE'VE TALKED ABOUT THIS, I'VE HEARD CONTINUES ALREADY, AS I'VE BEEN LISTENING THAT BLACK AND LATINOS EXPERIENCE ADDITIONAL BARRIERS RESULTING IN MISSED DIAGNOSIS OF MENTAL HEALTH CONCERNS. AND THEN IN GENERAL OTHER BARRIERS TO CARE INCLUDE FRAGMENTATION OF SERVICE SYSTEMS, COST, HIGH COST, STIGMA. SO HERE'S DATA WE USED FOR THIS PARTICULAR REPORT. FOR CHILDREN WE USED TWO NATIONAL SURVEYS TO LOOK AT MENTAL HEALTH CARE AND SERVICES AND EXPERIENCES. WE ALSO LOOKED AT NATIONAL SOURCE OF HOSPITAL INPATIENT STATES AS WELL AS MEDICAID RECORDS FOR PEOPLE ENROLLED IN MEDICAID. FOR ADULTS WE LOOKED AT TWO SAME SAMPLES, THIS HOSPITAL SAMPLE AND MEDICAID FILES, AND IN ADDITION USED SAMPLE OF ADULTS THAT RECEIVE -- INSURED BY KAISER PERMANENTE OF NORTHERN CALIFORNIA, THIS IS PREVIOUSLY PUBLISHED RESEARCH FROM COLLEAGUES THAT USED THAT DATA. I INCLUDE THIS TO UNDERSTAND CONCLUSIONS AND WE HAVE A LOT LESS INFORMATION ABOUT MENTAL HEALTH FOR AUTISTIC ADULTS AT THE NATIONAL LEVEL. THIS IS A REALLY STRONG DATA ADVOCACY ARGUMENT. I LIKE TO POINT THIS OUT AND LIMITATIONS OF WHAT WE HAVE AVAILABLE TO US. AND THEN ALSO WE'RE USING THIS COMBINATION OF DATA TO BUILD AN EMERGING PICTURE OF MENTAL HEALTH ACROSS THE LIFE COURSE AND THIS IS THE WAY WE WENT ABOUT THAT. THE MOST COMMON CO-OCCURRING CONDITION IN CHILDREN, BEHAVIOR AND CONDUCT PROBLEMS, ADHD, ANXIETY. THIS IS VARYING BY RACE AND ETHNICITY, THE GRAPH I'M SHOWING HERE. I'D LIKE TO HIGHLIGHT A FEW THINGS. THE FIRST THING I WANT TO POINT OUT IS ANXIETY. ANXIETY WAS MORE COMMONLY REPORTED BY PARENTS OF WHITE AUTISTIC CHILDREN THAN IT WAS FOR ANY OTHER CHILDREN OF ANY OTHER RACE OR ETHNICITY. ABOUT HALF OF PARENTS REPORTED THIS COMPARED TO ABOUT A THIRD OF PARENTS OF OTHER -- CHILDREN OF ANOTHER RACE OR ETHNICITY. AND THEN THE OTHER THING TO POINT OUT IS THE RELATIVELY LOW RATE OF PARENTS ENDORSING CONDITIONS WHEN THEY HAVE HISPANIC AUTISTIC CHILDREN. SO ABOUT 2/3 -- WELL, RELATIVELY LOW. 2/3 OF PARENTS OF AUTISTIC CHILDREN WHO AREN'T HISPANIC HAD ONE OF THESE CONDITIONS OR MORE. COMPARED TO 73 OR 80% OF CHILDREN OF ANOTHER ETHNICITY. AND THEN HERE'S SOME INFORMATION ABOUT ADULTS, SO WE KNOW THAT THIS IS FROM MEDICAID, ADULTS ENROLLED IN MEDICAID, ABOUT A QUARTER HAVE ONE OF THE TOP FOUR BARS, ANXIETY, BIPOLAR, ADHD, DEPRESSION. NEARLY ALL WERE MORE COMMON IN AUTISTIC ADULTS THAN ADULTS WITH INTELLECTUAL DISABILITY AND NO AUTISM, DEPRESSION WAS THE EXCEPTION HERE. ALL OF THESE CONDITIONS, ALL SEVEN, ARE MORE COMMON IN AUTISTIC ADULTS THAN IN ADULTS IN GENERAL SAMPLE POPULATION WITHOUT AUTISM OR INTELLECTUAL DISABILITY. WE ALSO HAVE THE OPPORTUNITY TO EXAMINE COMPONENTS OF MENTAL HEALTH RISKS, HERE WE'RE LOOKING AT ADVERSE CHILDHOOD EXPERIENCES, ACEs, EXPERIENCES DURING CHILDHOOD THAT CARRY INCREASED RISK OF IMPAIRED MENTAL HEALTH IN LIFE, HALF EXPERIENCE AT LEAST ONE ACE, SIM WHAT ARE TO OTHER CHILDREN WITH UNIQUE NEEDS, 3% HIGHER THAN CHILDREN WITH NO SPECIAL HEALTH CARE NEEDS. AND APPROXIMATELY 12% OF AUTISTIC CHILDREN EXPERIENCE FOUR, DIFFICULTY COVERING BASICS LIKE FOOD AND HOUSING ON THE FAMILY INCOME, THIS FINDING ALIGNED WITH PREVIOUS RESEARCH. POTENTIAL FACTORS ARE HIGH COST OF CARE AND EMPLOYMENT UNCERTAINTY TO NAME A FEW THAT ARE RELATED TO THIS WORK. THERE'S MANY UNMEASURED ACE s INCLUDING SOME THINGS I MENTIONED LIKE DISCRIMINATION AND MARGINALIZATION, ISOLATION, AND POTENTIALLY CAMOUFLAGING. THE MAIN CONCERN, IT'S IMPORTANT FOR HEALTH, QUALITY OF LIFE, SAFETY, MOST ASPECTS OF LIFE, PRIMARY TREATMENT IS NOT ADEQUATELY ADDRESSED CONDITIONS CAN LEAD TO CRISIS LEVEL. SO WE FOUND NEARLY HALF OF AUTISTIC CHILDREN RECEIVE SOME SORT OF TREATMENT OR COUNSELING IN THE PAST YEAR COMPARED TO A THIRD OF CHILDREN WITH OTHER SPECIAL HEALTH CARE NEEDS. TREATMENT IS MORE COMMON IN OLDER CHILDREN THAN YOUNGER ONES BUT WE FOUND THAT MORE THAN HALF OF PARENTS REPORTED IT WAS DIFFICULT FOR THEM TO RECEIVE THIS CARE WHICH IS THE GRAPH HERE, SO OVER HALF SAID THEY HAD DIFFICULTY GETTING MENTAL HEALTH CARE CHILD NEEDED. AND THIS IS ABOUT AN OPPOSITE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS AND MANY MORE THAN WE SEE WITH CHILDREN WITH NO SPECIAL HEALTH CARE NEEDS, WHERE ONLY A THIRD OF PARENTS REPORT THIS DIFFICULTY. THIS GRAPH HIGHLIGHTED IN ORANGE HOSPITALIZATIONS FOR MENTAL HEALTH CONDITIONS. AND THIS IS AN IMPORTANT CONSIDERATION WHEN WE LOOK AT THESE CONDITIONS ADEQUATELY TREATED IN EVEN OUTPATIENT OR PRIMARY CARE. MOST COMMON REASON INVOLVES CHILDREN AND ADULTS MOOD DISORDERS. FOR CHILDREN WE ALSO SEE DISRUPTIVE CONDUCT DISORDERS AS WELL AS SCHIZOPHRENIA AND FOR ADULTS WE SEE MOOD DISORDERS AS NUMBER ONE, SCHIZOPHRENIA AS NUMBER TWO. WE DO NOTICE DIFFERENCES IN RACE BY THE MOST COMMON REASON FOR HOSPITALIZATION WHERE SCHIZOPHRENIA IS THE PRIMARY REASON IN BLACK CHILDREN AND BLACK ADULTS THAN FOR WHITE CHILDREN AND HISPANIC CHILDREN. MENTAL HEALTH CONDITIONS ARE COMMON AND WHEN WE THINK ABOUT HOW TO ADDRESS THESE CONCERNS FOR PEOPLE WE KNOW MEDICATION IS AN IMPORTANT CONSIDERATION IN CONDITION MANAGEMENT. IDEALLY SHOULD BE PART OF A PLAN THAT INCLUDES PSYCHOSOCIAL INTERVENTIONS, TRAUMA INFORMED CARE PRINCIPLES. PSYCHOTROPIC MEDICATION WAS COMMON IN AUTISTIC CHILDREN WHERE HALF OF CHILDREN TOOK SOME SORT OF PSYCHOTROPIC MEDICATION IN THE PAST YEAR, AND THAT USE DID VARY BY CO-OCCURRING CONDITION, IN THE GRAPHIC HERE. CHILDREN WITH ANXIETY -- DEPRESSION AND AUTISM WERE THE MOST LIKELY TO USE PSYCHOTROPIC MEDICATION SO 79% USED MEDICATION IN THE PAST YEAR. AND THEN WE SEE DECREASES FROM THERE. AND THEN WE DO KNOW ABOUT ADULTS FROM THE KAISER PERMANENTE CALIFORNIA RESULTS, WE SEE ABOUT 2/3 OF AUTISTIC ADULTS USE PSYCHOTROPIC MEDICATION, THAT WAS MORE THAN THEIR PEERS WITH ADHD OR SAMPLE OF GENERAL POPULATION WITHOUT EITHER OF THOSE CONDITIONS. WITH SUPPORT CHALLENGES CAN IMPROVE AND BECOME MORE RESILIENT. WE KNOW MENTAL HEALTH PROVIDERS CAN SUPPORT PEOPLE WITH APPROPRIATE ACTIVITIES WHICH COULD BE PLAYING SPORTS OR ORGANIZED ACTIVITIES, IT COULD BE MORE ENGAGEMENT IN THE COMMUNITY, COMMUNITY SERVICE OR EMPLOYMENT, ALL THESE SORTS OF THINGS. AND WE ALSO KNOW THAT PARTICIPATING IN THESE TYPES OF ACTIVITIES THAT IS A POSITIVE IMPACT ON PEOPLE'S MENTAL HEALTH AND WELL-BEING. WE'RE EXAMINING RELATIONSHIP BETWEEN RECEIPT OF MENTAL HEALTH CARE AGES 12-17, WE FOUND THAT AUTISTIC YOUTH WHO RECEIVE CARE THEY NEED OR THAT PARENT REPORTS THEY NEED ARE LEAST LIKELY TO PARTICIPATE IN THESE ACTIVITIES, FIRST IS CHILDREN WHO RECEIVED ALL THE CARE THEIR PARENT REPORTED THEY NEEDED. THE SECOND BAR HIGHLIGHTS THOSE WHO DIDN'T RECEIVE ANY CARE AND DIDN'T REPORT NEEDING MORE CARE. EVEN THESE ARE LESS LIKELY TO BE ENGAGED IN ACTIVITIES THAN THOSE WHO RECEIVE ALL THE CARE THEY NEED. BOTTOM ROW IS UNMET NEED FOR MENTAL HEALTH CARE. FINDINGS SUGGEST THOSE WHO RECEIVE CARE THEY NEED HAVE MORE SUPPORT TO PARTICIPATE IN THEIR COMMUNITY. TO WRAP UP SOME FINDINGS WE SAW NEED FOR MENTAL HEALTH SERVICES AND SUPPORTS IS CRITICAL AND ADDRESSING NEEDS OF THE POPULATION OFTEN REQUIRES CHANGES TO POLICIES THAT IMPACT ACCESS, PROVIDE TRAINING AND RESOURCES. SO CHANGES CAN IMPACT WHAT IS COVERED, WHO IS COVERED, WHERE, AND HOW. I'M GOING TO END WITH A FEW RECOMMENDATIONS THAT WE MADE BASED ON THIS WORK. FIRST WAS TO MAKE CARE MORE EQUITABLE WHICH HAS BEEN COMING UP ON THE CALL TODAY. I'M TALK ABOUT THIS IN THE TEXT OF TWO GROUPS, RACIALIZED COMMUNITIES, THERE'S BEEN HISTORIC DISINVESTMENT, UNEQUALLY ACCESS TO CARE, UNEQUALLY TREATMENT EFFECTIVENESS AND TREATMENT -- LOWER TREATMENT RELEVANCE IN THESE COMMUNITIES. ANOTHER POINT THAT I WANT TO TAKE THE TIME TO MAKE IS THE MENTAL HEALTH WORKFORCE IS DISPROPORTIONATELY WHITE WHICH MAKES RECEIVING CARE FROM THE SAME RACE PROVIDER DIFFICULT FOR PEOPLE WHO ARE NOT WHITE. AND CARE FOR SAME RACE PROVIDERS ADDS A DEGREE OF CULTURAL COMPETENCE, AN IMPORTANT ASPECT OF CARE. THE OTHER THING IS EVIDENCE-BASED PRACTICES SO WE KNOW AUTISTIC PEOPLE ARE UNDERREPRESENTED IN MENTAL HEALTH RESEARCH, RECENT REVIEW OF -- WELL, NOT RECENT BUT REVIEW OF 300 CLINICAL TRIALS FOUND PEOPLE WITH INTELLECTUAL DEVELOPMENTAL DISABILITIES WITH REPRESENTED IN 2% OF CLINICAL TRIALS, HOW WE BUILD AN EVIDENCE BASE FOR EVIDENCE-BASED PRACTICES. AND UNDERREPRESENTED IN MENTAL HEALTH RESEARCH AS WELL. SOME THERAPEUTIC APPROACHES ARE IMPROVING SOME, BUT MAY NEED TO BE DIFFERENT IN DIFFERENT POPULATIONS, RESEARCH IS SOMETHING THAT IS REALLY NECESSARY. ENGAGEMENT CONTINUES TO BE NEEDED TO INFORM THESE FUNDING POLICY PRIORITIES. SECOND IS PROBLEM OF LOCATION. MANY PEOPLE ACCESS CARE THROUGH EITHER THROUGH PRIMARY CARE PROVIDER OR PRIMARY PHYSICIAN BUT PRIMARY PHYSICIANS DON'T HAVE EXPERTISE TO MANAGE COMPLEX MENTAL HEALTH CONCERNS, ESPECIALLY IN THEIR AUTISTIC PATIENTS. ONE POTENTIAL POLICY SOLUTION IS INTEGRATION OF MENTAL HEALTH CARE INTO PRIMARY CARE SETTING IMPROVING ACCESS TO HIGH QUALITY MENTAL HEALTH CARE. THIS INCLUDES INTEGRATION CO-LOCATION OF PRIMARY CARE PROVIDERS, MENTAL HEALTH PROVIDERS, BUT ALSO IS A LITTLE MORE DETAILED AND INCLUDES INTEGRATION OF MEDICAL RECORDS, SCHEDULING, CARE PLANNING, ALL ASPECTS OF CARE IMPORTANT FOR COMPREHENSIVE AND CONTINUOUS CARE. PRIMARY CARE SPECIALISTS ARE OFTEN IN SILOED, MEDICAL RECORDS AND FUNDING ARE SEPARATE, AND TIME FOR COORDINATION OF THESE EFFORTS IS OFTEN NOT ACCOUNTED FOR IN INSURANCE MODELS. ANOTHER CONSIDERATION HERE IS THAT PLANS CARVE OUT MENTAL HEALTH CARE THROUGH A DIFFERENT INSURER, AND PROVIDERS ARE NOT REIMBURSED MORE MENTAL HEALTH CARE OR DIAGNOSES AND THESE BARRIERS MAXIMIZE INCENTIVES TO CHANGE THIS TYPE OF MODEL SO WE CAN INTRODUCE PAY FOR PERFORMANCE METHODS, ADJUST INDIVIDUAL PAYMENTS FOR CARE COMPLEXITY AND REWARD PRACTICES THAT ARE IN THESE METHODS. NEXT RECOMMENDATION IS IMPROVE SYSTEMS OF CARE AND FIRST THING IS SYSTEMS OF CARE SHOULD BE CONNECTED SO PEOPLE AREN'T RESPONSIBLE FOR CARRYING RECORDS FROM SYSTEM TO SYSTEM, THAT COMES UP A LOT IN SOMETHING THAT SHOULD BE ADDRESSED, WE NEED A CRISIS CARE SYSTEM AS PART OF A WELL-FUNCTIONING WHOLE SYSTEM OF MENTAL HEALTH CARE. THERE ARE A FEW ORGANIZATIONS THAT HAVE SUGGESTIONS FOR CORE ELEMENTS AND HOW TO GO ABOUT CREATING AND IMPLEMENTING THOSE. INTHE NEED FOR MENTAL HEALTH PROVIDERS SPECIFICALLY IN AUTISTIC PATIENTS. THERE IS A NEED FOR TRAUMA INFORMED CARE, POLICIES FOCUSED ON SHORT-TERM THERAPIES WITHOUT ADDRESSING NEEDS OF MORE CHALLENGES. PARTICULARLY RELEVANT IN AUTISM. I WILL MOVE ON BECAUSE WE'RE CLOSE TO TIME. PROVIDER TRAINING IN MANY WAYS I DISCUSSED INTEGRATION OF CARE BEFORE. I WILL HAND IT OVER TO OUR PRESENTATION PARTNERS. >> THANK YOU. WE'LL HAVE QUESTIONS BUT WE'LL HOLD THAT TO THE END. NEXT DOCTORS BENEVIDES AND SHORE FROM AUGUSTA AND ADELPHI. >> THANK YOU FOR YOUR WELCOME. I'M TEAL BENEVIDES, DEPARTMENT OF OCCUPATIONAL THEIR, AUGUSTA UNIVERSITY IN AUGUSTA, GEORGIA. I'M HERE TO SHARE MENTAL HEALTH PRIORITIES TO GET RESEARCH IN AUTISM WITH MY COLLEAGUES DR. STEPHEN SHORE, AND COLLEAGUES REPRESENTING THE COMMUNITY COUNCIL IN OUR PROJECT, DR. SHORE? >> THANK YOU VERY MUCH. IT'S A PLEASURE TO RETURN TO THE IACC, HAVING SAT ON THE IACC I THINK FOR A FOUR-YEAR TERM, IT'S BEEN GREAT TO SEE THE WORK THAT IACC HAS BEEN DOING OVER THAT TIME AND CONTINUES. NOW THE FOCUS ON MENTAL HEALTH FOR AUTISTIC PEOPLE -- [ AUDIO DISTORTION ]. NEXT SLIDE. YOU HAVE ALL THE DISCLOSURES. NEXT SLIDE, NEED TO INVOLVE AUTISTIC PEOPLE IN THE RESEARCH. AND WHAT WE FOUND AND I'VE BEEN MYSTIFIED WHY WOULD WE SPEND ONLY 3% OF RESEARCH BUDGET IN ADDRESSING LIFESPAN ISSUES, WHEN THE AVERAGE ADULT, PERIOD AS ADULT, IS 60 TO 70% OF A PERSON'S LIFE? AUTISTIC CHILDREN, AND WE'VE HEARD VARIABLE INDICATIONS, GROW UP TO BE AUTISTIC ADULTS AND GROW UP TO BE AUTISTIC SENIORS. IF WE CONSIDER THE PAUCITY OF WHAT'S AVAILABLE FOR AUTISTIC ADULTS LOOK AT WHAT'S HAPPENING FOR SENIOR FOLKSs. WE NEED TO MAKE SURE AUTISTIC PEOPLE ARE DRIVING THE PROCESS, FOR RELIABILITY AND VALIDITY. AND WE ALSO FOUND MORE NEEDS TO BE DONE ON INVOLVING AUTISTIC PEOPLE IN SETTING PRIORITIES. THERE'S RESEARCH THERE INCLUDING WORK WE DID WITH ASSET, THERE NEEDS TO BE MORE. NEXT SLIDE. HERE IS YOUR COMMUNITY COUNCIL, DR. BENEVIDES AND I STARTED TALKING ABOUT THE PROJECT WE KNEW THERE HAD TO BE EQUAL AUTISTIC INVOLVEMENT, WHETHER THE PROJECT TEAM WHERE HALF ARE DIAGNOSED ON THE SPECTRUM OR THE COMMUNITY COUNCIL [ AUDIO DISTORTION ] MOSTLY AUTISTIC PEOPLE AND AUTISTIC GROUPS, SO AS WIDE A NET AS WE COULD CAST FOR RELEVANT STAKEHOLDERS AND DIVERSITY IN STAKEHOLDERS. HOW DID WE ENHANCE ENGAGEMENT OF AWES PARTIES? THROUGH OUR PUBLISHED COMPENSATION ENGAGEMENT GUIDE. HERE ARE SOME OF THE ACCOMMODATIONS WE MADE SO THAT EVERYBODY WHO IS INVOLVED HAD AN EQUAL CHANCE OF MEANINGFULLY AND AUTHENTICALLY ENGAGED IN OUR WORK. JUST TAKING A COUPLE OF THESE, ONE IS E-MAIL, WE DEVELOPED AN E-MAIL TEMPLATE, WE USED AN E-MAIL TEMPLATE, THAT MINIMIZED WORDS AND EMPHASIZED ACTION, SO WE HAVE A HEADER, PURPOSE OF E-MAIL, THAT MIGHT BE TO SHARE RESULTS OF THE MEETING, TO REQUEST FEEDBACK ON CONFERENCE SUMMARY AND WE HAVE A SHORT SUMMARY, DETAILS, WHAT ARE THE SPECIFICS THAT WE NEED PEOPLE TO DO IN RESPONSE, LIKE FEEDBACK. AND THEN ACTIONS. WHAT DO YOU HAVE TO DO? AND THAT LENDS TO VARYING ACTION IN A LONG E-MAIL THAT MANIFESTO THATTED -- THAT MIGHT BE HARD TO READ, WE GET TO THE CHASE. FOR EXAMPLE AN E-MAIL MIGHT BE WRITTEN, AND I MANIFESTO-IZE IT, OR I SEND TO HER AND SHE IMPROVED WHAT I STARTED. A DEADLINE HAS TO BE CLEAR. WE HAVE A CATEGORY, WHAT DOES IT DO AND INFORMATION THAT FOLLOWS THAT AND ANOTHER AREA WAS USING DIFFERENT MODALITIES DEPENDING ON MEANING AND CONTEXT. MEAN PEOPLE UNDERSTAND THAT SOME OF US MAY BE TALKIES, AND WE CAN ENGAGE USING SPOKEN WORD JUST LIKE I'M DOING NOW, LIKE MANY OF US DO. OTHERS WHERE SPEAKING IS JUST NOT A PRIMARY WAY TO COMMUNICATE SO WE HAVE TO MAKE ACCOMMODATIONS FOR THOSE WHO USE DEVICES AND OTHER MEANS AND ALSO SUGGEST THAT SOME PEOPLE MAY NEED MORE PROCESSING TIME SO QUESTIONS AND WE NEED TO PROVIDE THAT TIME. WHAT IS KEY HERE IS DEPENDING ON NEED AND CONTEXT, SO TODAY I MAY BE THE BEST ORATOR, MAYBE TEAM PERHAPS DUE TO SENSORY ISSUES, RESULTING FROM THE ENVIRONMENT, SOME SORT OF ANXIETY OF STRESS, SPOKEN WORD ISN'T WORKING FOR ME, I MAY NEED TO SWITCH TO ANOTHER TYPE OF COMMUNICATION. EVERY ONE OF YOU HAS DOES THAT IN A NOISY LOCATION WHERE IT'S TOO LOUD TO TALK ON THE PHONE SO THEN YOU RESORT TO TEXT. SO AS WE MOVE ON OTHER AREAS THAT WE MENTIONED IN OUR COMPENSATION ENGAGEMENT GUIDE, FINANCES, ONE THING THAT'S EGREGIOUS WHEN I SEE CONFERENCES PAYING NICE KEYNOTE SPEAKER FEES TO SCIENTISTS, DOCTORS, AND OTHERS, AND THEN THEY SAY, WELL, WE NEED TO BE INCLUSIVE, WE'RE GOING TO INVITE AND AUTISTIC PERSON TO SPEAK AND GIVE A KEYNOTE AND THEY MAY NOT EVEN GET REIMBURSED FOR EXPENSES OR PAID MUCH LESS AND THE WAY I LOOK AT IT IS EQUAL PAY FOR EQUAL WORK. THE NEXT SLIDE WE PUT A LOT OF EFFORT INTO BUILDING TRUST, AVOIDING TOKENISM. THERE'S A LOT OF BROKEN TRUST BETWEEN RESEARCHERS AND AUTISTIC PEOPLE. WE ALSO NEED TO BE OPEN TO CHANGE. WE THOUGHT FACEBOOK WAS A GREAT IDEA FOR CAPTURING PRIORITIES BUT MANY COMMUNITY COUNCIL MEMBERS WERE CONCERNED AND RAISED THESE POSSIBLE ISSUES SO WHAT DOES THAT MEAN, WE MAKE MODIFICATIONS BECAUSE WHAT IS PRIMARY IS THE INFORMATION IN THE DATA WE GET FROM AUTISTIC PEOPLE. AND RESPECT, PROVIDING OPPORTUNITIES TO DO EVERYTHING THAT EVERY OTHER RESEARCHER DOES, WHETHER IT'S INITIAL PLANNING, WHETHER IT'S AUTHORING AND CO-AUTHORING PRODUCTS, DISSEMINATION OF INFORMATION, EQUAL OPPORTUNITIES, EQUAL PAY FOR EQUAL WORK. AND THEN FINALLY, WE NEED TO HAVE MULTIPLE OPTIONS FOR SUPPORT. SO OFTEN THAT AUTISTIC PEOPLE WHO SAY, NO, I CAN'T DO IT, I DON'T KNOW WHAT TO DO, I'M NOT COMING, AND IF WE HAVE A MENU, WOULD IT BE HELPFUL IF WE HAD PROVISIONS FOR COMMUNICATING USING AN AAC DEVICE? WOULD IT BE HELPFUL IF WE FOUND A WAY TO FUND WHAT TO MOST PEOPLE $12 OR $20 TO GET TO A MEETING TO A POPULATION CHRONICALLY UNEMPLOYED, THAT'S SOME OF THE WORK WE DID AND I'M GOING TO TURN YOU OVER TO MY COLLEAGUE DR. BENEVIDES TO TALK ABOUT PRIORITY SETTINGS FOR HEALTH RESEARCH. >> THANK YOU FOR SHARING WHAT WE DID TO ENGAGE OUR AUTISTIC RESEARCH PARTNERS IN THIS PROCESS. I WANT TO ACKNOWLEDGE ALL OF OUR COMMUNITY COUNSEL MEMBERS FOR THEIR HARD WORK AND SHARING THIS INFORMATION ON BEHALF OF OUR ENTIRE TEAM. IT WAS A TEAM APPROACH. SO WHAT DID WE DO TO GATHER INFORMATION ABOUT PRIORITIES THAT AUTISTIC ADULTS FELT WERE VALUABLE? WE USED A MULTI-TIER PROCESS THAT HAPPENED OVER A PERIOD OF TWO YEARS. WE FIRST ASKED AUTISTIC ADULTS WHO ARE ATTENDING A CONFERENCE, AUTISM CONFERENCE, TO JOIN US THE DAY BEFORE THAT LARGE AUTISM CONFERENCE AND WORK WITH US TO UNDERSTAND GAPS IN EVIDENCE AS WELL AS AREAS THAT THEY WANTED TO SEE FURTHER RESEARCH ON. IN THIS YEAR 1 MEETING USED BREAKOUT SESSIONS AND KEYNOTE TALKS TO ALLOW CONVERSATION TO OCCUR UNDER WAYS WE COULD PROMOTE INVOLVEMENT IN RESEARCH AND AREAS TO ASK ABOUT IN FUTURE PRIORITY SETTING ACTIVITIES COMPOSED OF PRIMARILY AUTISTIC ADULTS. WE WORKED CLOSELY WITH COMMUNITY COUNCIL AND OTHER MEMBERS OF STAKEHOLDER TEAM TO IDENTIFY METHODS TO ENGAGE THE AUTISTIC COMMUNITY. WE WERE GOING TO USE FACEBOOK BUT COMMUNITY COUNCIL NOTED PROBABLY DANGERS WITH THE NEWS OF THE CAMBRIDGE ANALYTICA SCANDAL AROUND THAT TIME AND BEGAN TO WORK ON ONLINE SURVEY TO SOLICIT PRIORITIES FROM AUTISTIC ADULTS. WE WORKED HARD TO ENSURE THAT AUTISTIC PEOPLE WHO ARE RESPONDING TO THIS ONLINE SURVEY HAD OPPORTUNITIES TO USE NON-SPOKEN LANGUAGE TO RESPOND AS WELL AS VISUAL RESPONSE OPTIONS TO PROMOTE UNDERSTANDING OF THE QUESTIONS. WE PILOT TESTED THE SURVEY QUESTIONS IN COLLABORATION WITH OUR COMMUNITY COUNCIL, REVISED THE QUESTIONS, AND LAUNCHED THE SURVEY. WE ALSO WANTED TO ENGAGE AUTISTIC ADULTS WHO MAY NOT HAVE THE OPPORTUNITY TO ANSWER ONLINE SURVEYS AND DEVELOPED FOCUS GROUPS THAT ALLOWED US TO UNDERSTAND EXPERIENCES OF PEOPLE WHO WERE LIVING IN RURAL, SUBURBAN, URBAN SETTINGS. THREE FACE TO FACE GROUPS ASKED SIMILAR QUESTIONS AND ENGAGED PRIORITY SETTING ACTIVITIES. WE FINALLY INVOLVED A LARGE NUMBER OF OTHER STAKEHOLDERS INCLUDING RESEARCHERS, ADVOCACY ORGANIZATIONS, COMMUNITY ACADEMIC PARTNERS, AS WELL AS AUTISTIC ADULTS AND CAREGIVERS TO UNDERSTAND ALL OF THE INFORMATION THAT WE GATHERED AND TO HELP DRAFT AND PRIORITIZE SPECIFIC ELEMENTS OF PRIORITIES FOR FUTURE RESEARCH AND PRACTICE. THAT MEETING HAPPENED A DAY BEFORE THE ANNUAL MEETING AND INVOLVED A LARGE NUMBER OF INDIVIDUALS WHO CONTRIBUTED FOR WHICH WE'RE VERY GRATEFUL. I WANT TO TAKE A BRIEF MOMENT TO ILLUSTRATE SOME OF THE METHODS WE USED TO ENHANCE PARTICIPATION OF INDIVIDUALS WHO MAY NOT USE SPOKEN LANGUAGE TO PARTICIPATE IN THESE PRIORITY SETTING ACTIVITIES. ON THE SURVEY WE USED VISUAL SLIDING SCALES WHICH ALLOWED PEOPLE PICTURES TO RESPOND TO QUESTIONS. IN FOCUS GROUPS WE ENSURED PEOPLE USING AAC DEVICES AND PEOPLE WHO MAY HAVE INCONSISTENT SPEECH HAD AN OPPORTUNITY TO PARTICIPATE. WE USED INDEX CARDS AS WELL AS MOVEMENT AROUND A ROOM TO USE STICKY NOTES TO INVITE PARTICIPATION WITH THE QUESTIONS AND PRIORITY SETTING ACTIVITIES. ON THE RIGHT-HAND SIDE WE HAVE IMAGES OF INFOGRAPHICS AND WHITE BOARDS, INVITED PEOPLE TO USE STICKY NOTES FOR TOPIC AREAS, DID NOT REQUIRE SPOKEN LANGUAGE NOR DID THEY REQUIRE PEOPLE TO EXPRESS ANYTHING THAT THEY FELT WAS IMPORTANT TO THEM. THEY JUST NEEDED TO MOVE AROUND THE ROOM AND USE STICKY NOTES TO INDICATE THEIR PREFERENCES. THESE APPROACHES WERE FELT TO BE USEFUL IN PEOPLE WE TALKED TO IN TERMS OF ENSURING THAT EVERYONE HAD ACCESS TO THE ACTIVITIES. THE RESULTS REVOLVED AROUND THESE AREAS, MENTAL HEALTH INTERVENTIONS AND OUTCOMES, WHICH I'M GOING TO SHARE SHORTLY, AS WELL AS ACCESS TO HEALTH CARE AND ACCOMMODATIONS TO GET CARE. WE LEARNED ABOUT GENDER INEQUALITIES IN DIAGNOSIS, TREATMENT, SEXUALITY HEALTH. THOSE PRIORITIES WILL NOT BE PRESENTED BUT THEY ALSO RELATE TO MENTAL HEALTH IN MANY WAYS. IN OUR SURVEY AND FOCUS GROUPS WE HAD A RANGE OF PEOPLE WITH DIFFERENT GENDERS, APPROXIMATELY 23% OF OUR SAMPLE WAS MALE, 59% FEMALE, 18% IDENTIFIED AS NON-BINARY. WE HAD 4% OF SAMPLE IDENTIFYING AS HISPANIC, AND APPROXIMATELY 13% IDENTIFYING AS NON-WHITE. DEMOGRAPHIC QUESTIONS WERE AT THE END WITH QUITE A BIT OF DROP-OFF AT ANY POINT. MOVING INTO MENTAL HEALTH PRIORITIES, TOP PRIORITY WE LEARNED ABOUT FROM AUTISTIC ADULTS WAS WHAT IS IMPACT OF TRAUMA ON MENTAL HEALTH OUTCOMES AMONG AUTISTIC INDIVIDUALS. MANY PEOPLE REPORTED EXPERIENCING TRAUMA, ADVERSE CHILDHOOD EXPERIENCES, AND WONDERED THE MEASURES. FURTHER, WE HEARD MANY PEOPLE ASK FOR EVIDENCE BASED APPROACHES TO HELP THEM ADDRESS THE TRAUMA THEY EXPERIENCED ACROSS THEIR LIFE. ONE RESPONDENT FROM THE FOCUS GROUP SAID I WANT YOU TO WRITE SEXUAL ASSAULT ON THE WHITE BOARD, LET'S JUST BE REAL. ANOTHER PERSON I'VE BEEN DIAGNOSED WITH POSTTRAUMATIC STRESS DISORDER, WHEN I THINK THE SYMPTOMS ARE DUE TO PERSISTENT BULLYING WHILE GROWING UP, IMPACT CONSISTENT ACROSS EVERY RESPONSE WE RECEIVED. THIS IS AN IMPORTANT PRIORITY TO CONSIDER FOR FUTURE RESEARCH AND PRACTICE. THE NEXT MENTAL HEALTH PRIORITY FOCUSED ON IMPACT THAT SOCIETY HAS ON AUTISTIC PEOPLE. THIS PRIORITY READS WHAT IS IMPACT OF SOCIAL ISOLATION, STIGMA, DISCRIMINATION, AND OTHER FORMS OF MARGINALIZATION ON MENTAL HEALTH AND WELL-BEING OF AUTISTIC INDIVIDUALS. AUTISTIC PEOPLE EXPERIENCE SO MANY FORMS OF ISOLATION, STIGMA, DISCRIMINATION, FELT RESEARCH TO FOCUS ON IMPACT OF SOCIETY'S ATTITUDES ON THEIR MENTAL HEALTH AND WELL-BEING, WE HEARD THIS YESTERDAY IN DR. CUSACK'S PRESENTATION THAT ONE OF THEIR AREAS OF FOCUS IS ON SOCIETAL ATTITUDES TOWARDS AUTISTIC PEOPLE. WE FOUND SIMILAR PRIORITY. ONE EXAMPLE STATED PART OF THE ISSUE WE DON'T HAVE POSITIVE REPRESENTATION OF PEOPLE SUCCESSFUL. A SECOND PERSON I WANT TO SEE RESEARCH ON HOW SOCIETY IS TRAINED TO INCLUDE, ACCEPT, ACCOMMODATE AND VALUE OUR NEURODIVERSITY. THIRD PERSON INDICATED TRYING TO BE NORMAL WAS A FUTILE WASTE OF TIME, WHAT DOES THAT DO TO A PERSON'S MENTAL HEALTH? ISSUES RELATED TO MASKING WEIGH HEAVILY AROUND THIS IDEA AROUND SOCIAL ISOLATION, STIGMA, DISCRIMINATION. THIRD WAS WHEN, FOR WHOM, UNDER WHAT CONDITIONS DO SELF-MANAGED INTERVENTIONS AND PREFERRED ACTIVITIES REDUCE MENTAL HEALTH SYMPTOMS. AUTISTIC PEOPLE REPORTED THEY WANTED EVIDENCE ON THINGS THEY COULD SELF-MANAGE WITHOUT HAVING TO GO TO A GATE KEEPER OR ANOTHER MENTAL HEALTH PROVIDER. THEY WANTED ACCESS TO THINGS WITHIN THEIR COMMUNITIES AND EVIDENCE TO SUPPORT HOW THAT COULD HELP THEM IMPROVE THEIR OWN MENTAL HEALTH AND WELL-BEING. COMMUNITY AVAILABLE APPROACHES INCLUDED PEER-LED APPROACHES, EXERCISE, PHYSICAL ACTIVITY, YOGA, MINDFULNESS, AND OTHERS. FURTHER, MANY INDIVIDUALS BROUGHT UP MEDICAL MARIJUANA. PEOPLE WANTED EVIDENCE THAT THEY COULD USE TO HELP THEM SELF-MANAGE THEIR OWN MENTAL HEALTH AND WELL-BEING. FOURTH ADVERSE OUTCOMES OF CURRENTLY RECOMMENDED THERAPIES AND INTERVENTIONS. THESE INCLUDED OUTCOMES AND SIDE EFFECTS OF SOCIAL, BEHAVIORAL, PHARMACOLOGICAL INTERVENTIONING BEING USED ON AUTISTIC PEOPLE. ANOTHER PERSON WONDERED DOES LONG-TERM USE OF DEPRESSION DRUGS INCREASE RISK FRACTURES? WE HEARD THAT AUTISTIC PEOPLE WERE SIGNIFICANTLY MORE LIKELY TO BE USING PSYCHOTROPIC MEDICATIONS AND THIS GETS AT HOW DO SIDE EFFECTS AND OUTCOMES OF CURRENTLY RECOMMENDED THERAPIES EVALUATED OVER THE LONG TERM. FIFTH PRIORITY WAS ABOUT OUTCOMES AND MEASURING AUTISTICALLY PREFERRED OUTCOMES. THIS QUESTION WONDERS HOW CAN WE BETTER DEVELOP MEASUREMENT TOOLS FOR AUTISTIC QUALITY OF LIFE, DEPRESSION, ANXIETY, SOCIAL WELL-BEING, AND SLEEP AS EXPERIENCED BY AUTISTIC ADULTS. ONE INDICATED WE NEED TO MEASURE INTERESTS AND PRIORITIES OF AUTISTIC PEOPLE, AND SHOULD BE RESPECTED AND CONSIDERED VALID EVEN IF IT DOESN'T LINE UP WITH WHAT NORMAL SOCIETY CONSIDERS MOST IMPORTANT. AUTISTIC PEOPLE INDICATED THAT THE OUTCOMES CURRENTLY MEASURED AS A RESULT OF RESEARCH WERE NOT THINGS THEY FELT WERE MOST IMPORTANT. WE ASKED PEOPLE TO ORDER OUTCOMES THAT THEY FELT WERE IMPORTANT ON OUR SURVEY. AMONG THE OUTCOMES THAT PEOPLE INDICATED MATTERED TO THEM, TOP TEN INCLUDED QUALITY OF LIFE, ANXIETY, DEPRESSION, SOCIAL WELL-BEING, SLEEP, INTERPERSONAL RELATIONSHIPS, SUICIDAL IDEATION AND SUICIDE ATTEMPTS AS WELL AS CRISIS RESPONSE. MENTAL HEALTH IS SEEN AS ESSENTIAL COMPONENT FOR OVERALL WELL-BEING AND QUALITY OF LIFE. WE NEED EVIDENCE-BASED PRACTICES TO E EQUIP PEOPLE WITH INFORMATION TO HELP THEM SELF-MANAGE THEIR MENTAL HEALTH NEEDS. WE NEED A PARADIGM SHIFT TO CREATE SPACES AND PLACES FOR AUTISTIC PEOPLE TO HAVE A SENSE OF BELONGING, AND ARE SUPPORTED TO PURSUE THEIR INTERESTS AND GOALS. JESS QUARKS I'LL TURN IT BACK OVER TO YOU. >> THANK YOU. THANK YOU FOR YOUR GREAT PRESENTATION. I HAVE THE OPPORTUNITY TO INTRODUCE THE FOUR OF US, BRING BACK THE FOUR OF US TO DRAW COMPARISONS BETWEEN THE WORK I PRESENTED AND THE WORK NEEDED TO SOLVE, HIGHLIGHT COMPARISONS AND TAKEAWAYS. WE TOOK TWO APPROACHES AND ENDED UP WITH INFORMATION THAT CAN BE USED TO MOVE THE FIELD FORWARD. HOW TO CONTEXTUALIZE WITH INTEGRATED FRAMEWORK. WE ADAPTED THIS TO HELP EXPLAIN A FEW THINGS. HOW CAN WE UNDERSTAND DIFFERENCE BETWEEN WHAT WE FIND THROUGH NATIONAL DATA AND WHAT IS BEING PRIORITIZED, FIND COMMONALITIES AND MOVE FORWARD. ULTIMATE GOAL IS TO IMPROVE MENTAL HEALTH, AND CONTEXT OF SUPPORT. FRAMEWORK HAS THREE PHASES. WE CALL THEM CREATE INDICATORS AND IDENTIFY WHO, HOW MUCH, WHERE, WHEN, ALL THESE SORTS OF QUESTIONS. SECOND TO UNDERSTAND STAGE ONE LOOKING FOR DETERMINANTS AND RELATIONSHIPS AND MENTAL HEALTH IS INTEGRAL TO CONSIDER DETERMINANTS AT MULTIPLE LEVELS BECAUSE WE KNOW AND HAVE TALKED ABOUT CONTEXT IS HUGE DETERMINANT OF POOR MENTAL HEALTH. THIRD REDUCE DISPARITIES WITH POLICY AND SYSTEM CHANGES AND IMPLEMENTATION AND TRANSLATION. THIS IS OUR MODIFIED VERSION, EACH PHASE IS INFORMING THE PHASE BEFORE IT AND AFTER. AND WE CAN INFORM BETTER RESEARCH, BETTER PRACTICE, BETTER POLICY WITH ULTIMATE GOAL TO IMPROVE MENTAL HEALTH. AND MUCH OF THE RESEARCH AROUND MENTAL HEALTH IS STILL IN FIRST PHASE OF FRAMEWORK. THAT'S THE INFORMATION I PRESENTED TODAY. LOOKING AT DISPARITIES, CARE PEOPLE ARE ACCESSING AND UNDERSTANDING. NOW OFF TO DR. SHORE. >> THANK YOU VERY MUCH, DR. RAST AND DR. SHEA. WHAT WE'RE FINDING, WE'RE JUST IN THE FIRST DETECTION STAGE, THAT THERE ARE A NUMBER OF PRIORITIES. WE GOT THE FIRST FIVE. THE OTHER FIVE ARE ALSO IMPORTANT. WE'RE BEGINNING TO DO THE WORK. ONE PROJECT, AASET PROJECT I MENTIONED EARLIER, WORK ALSO DONE BY AUTISTICA IN THE UNITED KINGDOM WHICH CAME UP WITH SIMILAR RESULTS WHICH HELPS VALIDATE THIS RESEARCH. NOW ONCE WE RECOGNIZE WE NEED TO FIND -- NEED TO DEVELOP RELIABLE AND VALID MEASURES OF MENTAL HEALTH. AND HOW CAN WE BEST DO THAT? WE CAN DO THAT BY INVOLVING AUTISTIC INDIVIDUALS AS EQUAL PARTNERS IN THE PROJECT. AND ALSO MAKING SURE THAT THAT SQUARES WITH WHAT WE HAVE NOW FOR THERAPIES, STRATEGIES, INTERVENTIONS, AND UNDERSTANDING THE CONTEXT OF BARRIERS THAT KEEP US FROM GETTING MENTAL HEALTH SUCH AS ACCESSIBILITY MENTIONED BEFORE, DISCRIMINATION, TRAUMA, BEING TAUGHT POORLY. WE NEED TO DEVELOP UNDERSTANDING TO REACH THE NICE BRING FROM UNDERSTANDING TO REDUCING EFFECTS OF POOR MENTAL HEALTH AND IMPROVE ING IT. AS WE MOVE TO THE NEXT SLIDE, REALIZING THAT MENTAL HEALTH IS AN INTEGRAL COMPONENT OF HEALTH, AND EVEN IN THE NON-AUTISTIC POPULATION BIG DIFFERENCE BETWEEN WHAT INSURANCE COMPANIES WILL FUND FOR PHYSICAL HEALTH ISSUES, AS COMPARED TO MENTAL HEALTH ISSUES. WE NEED TO HAVE MENTAL HEALTH PARITY. AND SOMETHING THAT NEEDS TO BE EMBRACED, WE EMBRACE IT, WE HAVE TO GET EVERYBODY ELSE TO. IN CLOSING, WHAT CAN WE DO? WE HAVE A NUMBER OF IDEAS TODAY ON BOLSTERING AUTHENTIC AND MEANINGFUL AUTISTIC INVOLVEMENT IN RESEARCH AS PARTNERS AS RESEARCHERS AND SO THAT WE CAN CONTINUE ON OUR WORK ON PARTNERING TODAY FOR A BETTER TOMORROW. >> ACTUAL THOUGHTS TO HELP US ADDRESS AUTISTIC PRIORITIES INCLUDE EXPANDING OUR ABILITY TO HARNESS NATIONAL DATA ON AUTISTIC ADULTS, WE NEED MORE RESEARCH ON DIVERSE GROUPS, ESPECIALLY THOSE WHO HAVE INTERSECTIONAL IDENTITIES AND THOSE WHO WE'RE NOT ABLE TO FULLY REACH WITH OUR INITIAL PRIORITY SETTING ACTIVITIES. FURTHER, WE NEED LONGITUDINAL DATA TO BETTER UNDERSTAND THE PEOPLE'S OUTCOMES OVER A PERIOD OF TIME. OUR DATA ARE IMPORTANT ANSWERS TO MANY QUESTIONS, THOSE NEED TO BE SUPPLEMENTED WITH MEASURES OF PREFERENCE AND CONTEXT THAT AUTISTIC PEOPLE SHARE, ARE RELEVANT TO MENTAL HEALTH. THESE ARE MULTI-SITE COLLABORATIONS THAT USE MULTI-DATA SOURCES TO TACKLE THESE IMPORTANT QUESTIONS. >> THANK YOU. AS WE PUT TOGETHER OUR WORK FOR YOU TODAY, WE REALLY ENDED UP ON A TAKEHOME POINT OF MENTAL HEALTH BEING A FLAGSHIP ISSUE FOR THE FUTURE OF AUTISM RESEARCH. AND THAT THAT RESEARCH SHOULD CONTINUE WITH THE ENGAGEMENT OF DIVERSE AUTISTIC VOICES AND SUPPORT FOR AUTISTIC LEADERSHIP IN RESEARCH PROCESSES AND COMMUNITY PROCESSES IN ANY CAPACITY OR PROJECT, COLLECTING DATA, ANALYZING IT. WE PUT FORWARD THE INVESTMENT IN MENTAL HEALTH RESEARCH AND SIMULTANEOUSLY IN THE SERVICE SYSTEM IS NEEDED TODAY FOR DETECTING, UNDERSTANDING, IMPROVING MENTAL HEALTH THAT THERE ARE ENTIRE STATES, ENTIRE PROVIDERS ACROSS THE U.S. WHO ARE STRUGGLING TO UNDERSTAND HOW TO MOVE FORWARD AND RESEARCH AND AUTISTIC VOICES TO MOVE THIS FORWARD. THANK YOU FOR YOUR TIME AND THANK YOU TO MY CO-PRESENTERS AS WELL. >> I'M GOING TO OPEN THIS SESSION UP TO DISCUSSION FROM MEMBERS OF THE IACC. I APPRECIATE THE PERSPECTIVES OF THE FOUR SPEAKERS AND I'D LOVE TO HEAR FROM MEMBERS. I NOTE MANY OF THE THEMES WERE ECHOED THROUGHOUT OTHER DISCUSSIONS THROUGHOUT THE DAY. LET'S START WITH JENNY. WE HAVE A GOOD 30 MINUTES FOR DISCUSSION. JENNY? >> THANK YOU. ALSO THANK YOU, SPEAKERS, FOR TALKING ABOUT THIS VERY IMPORTANT TOPIC. I APPRECIATE THE WORK YOU'RE GOING TO ADDRESS MENTAL HEALTH SUPPORT FOR AUTISTIC PEOPLE. THREE POINTS. FIRST IS THERE'S RECOGNITION FOR CULTURALLY SENSITIVE CARE, AS YOU'VE MENTIONED, A DEVELOPING AREA OF RESEARCH AND TRAINING. I'D LIKE TO KNOW HAS ANYONE IN YOUR TEAM OR KNOW OF ANYONE DOING THIS WORK ON TRAININGS AND EFFECTIVENESS ON AUTISTIC SPECIALIZED MENTAL HEALTH CARE AS WELL AS THE INTERSECTION OF CULTURALLY SENSITIVE AND AUTISTIC SPECIALIZED MENTAL HEALTH CARE? MY NEXT COMMENT IS UNDER CATEGORY OF OTHER RACE IN YOUR PRESENTATION IT WASN'T CLEAR WHAT RACES WERE PLACED IN THAT CATEGORY REASONABLY WHEN THERE ISN'T DATA ON OTHER GROUPS AGGREGATING GROUPS TOGETHER IS A COMMON PRACTICE. MY HOPE IS IN PRESENTING AND TALKING ABOUT UNDERREPRESENTED AND UNDERSERVED RACIAL MINORITY GROUPS THAT RACIAL IS DISAGGREGATED TO SHOW TRUE NUMBERS, THERE ARE CERTAINLY EFFORTS TO INCREASE PARTICIPATION OF RACIAL MINORITY GROUPS AND MENTAL HEALTH STUDIES AS MANY OF YOU HAVE ALREADY ADDRESSED IN YOUR RESEARCH EFFORTS, AND MAY BE HELPFUL TO SHOW DISAGGREGATED DATA WHEN IT MAY LESS THAN 1% OF THE SAMPLE. I CAN BE BOLD BY GOING FURTHER TO SAY THIS IS EVEN MORE IMPORTANT TO SHOW TO REPRESENT AUTISTIC RACIAL MINORITY GROUPS WHO ARE WELL UNDERSERVED IN MENTAL HEALTH SERVICES. THE LAST STATEMENT MAYBE MORE DIRECTED FOR GRANT FUNDERS OR MAYBE ANY OF YOU IS RELATED TO ONE OF THE RESEARCH PRIORITIES ON STUDYING TRAUMA IN MENTAL HEALTH. I'D LIKE TO PUT TAGS ON FUNDING FOR RESEARCH ON ABUSE OF AUTISTIC CHILDREN, ADOLESCENTS AND ADULTS. MY UNDERSTANDING IS THAT IT IS A VERY CONTROVERSIAL TOPIC TO STUDY, AND NOT MUCH GUIDANCE HAS BEEN PROVIDED TO CONDUCT THIS KIND OF RESEARCH STUDY. IT WOULD BE HELP FOR FUNDERS TO PROVIDE GUIDANCE TO CONDUCT STUDIES AND WORK WITH AUTISTIC COMMUNITY AND STAKEHOLDERS TO DEVELOP GUIDELINES. IT'S AN IMPORTANT TOPIC GIVEN THE RATES ARE LIKELY UNDERREPORTED AND TO KNOW WHY TO HELP STUDY HOW TO PREVENT ABUSE. THANK YOU. >> ALICIA. >> THIS COMMITTEE OVERSEEN BY NATIONAL INSTITUTES OF MENTAL HEALTH SO WE'RE IN VERY GOOD HANDS WITH DR. GORDON AND DR. DANIELS IN TERMS OF MAKING SURE WE'RE RECOGNIZING NEEDS OF MENTAL HEALTH ISSUES, NOT JUST IN THOSE WITH AUTISM AND THEIR FAMILIES BUT EVERYONE BECAUSE THIS IS AN ISSUE AND I'VE BEEN REMINDED ON SOCIAL MEDIA THAT THIS IS NOT JUST AN ISSUE THAT AFFECTS THE AUTISM COMMUNITY. THESE ARE ISSUES THAT AFFECT EVERYBODY. THE OTHER THING I WANT TO SAY IS AFTER LISTENING TO DR. SHORE'S COMMENTS, I THINK WE NEED TO RECONSIDER THE TITLE OF THIS STRATEGIC PLAN PLAN, THE LIFESPAN ISSUES. I THINK IT'S DISINGENUOUS TO THINK OF THESE AS LIFESPAN ISSUES WHEN YOU THINK ABOUT THINGS LIKE DEPRESSION AND SLEEP AND ANXIETY, HAVE TO UNDERSTAND WHAT CAUSED THEM, HOW THEY ARE DIAGNOSED IN PEOPLE WITH AUTISM VERSUS NOT, HOW TREATED AND SUPPORTS. THIS CALLS FOR THE IDEA MAYBE WE RENAME LIFESPAN ISSUES BECAUSE I THINK THAT IT'S POSSIBLE THESE ISSUES ARE BEING UNDERREPRESENTED IN THE CATEGORIZATION OF THE LIFE OF THE STRATEGIC PLAN. >> THANK YOU AND THANKS FOR THE SHOUT OUT. LET ME MENTION THAT ONE OF THE THINGS I APPRECIATED ABOUT THE PRESENTATIONS WE HEARD TODAY IS THE CONCEPTUALIZATION, IMPLICIT, THAT AUTISM -- IN TERMS OF MENTAL HEALTH COVERAGE SHOULD BE CONSIDERED ITS OWN FORM OF DISPARITY, AND WHEN THEY DO GET CARE, WHAT KIND OF CARE DO INDIVIDUALS WITH AUTISM NEED. I THINK THAT'S A THEME WE HEARD THROUGHOUT. THAT'S SOMETHING THAT WE CAN AND SHOULD EMPHASIZE MORE IN RESEARCH APPROACH TO MENTAL HEALTH THAT'S SPECIFIC TO THE AUTISM COMMUNITY. THERE WERE MANY ISSUES LESS SPECIFIC TO THE AUTISM COMMUNITY. I CAN TELL YOU FROM PERSONAL EXPERIENCE GETTING MENTAL HEALTH CARE FOR MY OWN FAMILY, NO ONE IN MY FAMILY HAS AUTISM BUT MANY IN THE FAMILY, INDIVIDUALS HAVE VARIOUS MENTAL ILLNESS THAT NEED TREATMENT AND IT'S HARD. IT'S HARD FOR PEOPLE WITH GOOD INSURANCE TO GET MENTAL HEALTH CARE COVERAGE THAT DOESN'T MEAN IT'S NOT HARDER FOR INDIVIDUALS WITH AUTISM BECAUSE THAT'S WHAT THE DATA INDICATE. IT IS HARDER. THEY ARE LESS LIKELY TO GET CARE. THERE ARE ISSUES RAISED TODAY THAT ARE COMMON WITH N EUROTYPICALS AND MANY RAISED PARTICULAR TO THE AUTISM COMMUNITY, ENSURING WE STUDY BOTH FROM THE NATIONAL INSTITUTE OF MENTAL HEALTH PERSPECTIVE IS MY JOB. NEXT UP I HAVE JOSEPH. IN CASE YOU'RE TRYING TO GET YOUR HAND UP AND CAN'T, I DID. ENA, SCOTT, HARI AND IVANOVA. >> THANKS FOR THAT TALK. THAT SESSION WAS TERRIFIC. I'M A PSYCHIATRIST SO THIS IS NEAR AND DEAR TO MY HEART. IT'S MORE OF A PLUG THAN A QUESTION. TO THINK ABOUT MODEL ABOUT DETECTION, MOVE MORE TO THE LEFT AND PUTTING A PLUG FOR THINKING ABOUT PREDICTION AND THIS IS A HUGE PROBLEM CLINICALLY. PSYCHIATRIC DISORDERS IN AUTISM. BUT ONE THING THAT WASN'T SAID AS CLEARLY, IT'S DIFFICULT TO DIAGNOSE OFTEN PSYCHIATRIC DISORDERS IN PEOPLE, PEOPLE THAT DON'T HAVE LANGUAGE, FOR EXAMPLE, CAN'T TELL YOU IF THEY ARE HAPPY OR SAT WHICH IS ONE OF THE KEY QUESTIONS WE ASK A PSYCHIATRIST. BUT PREDICTING WHO IS AT ULTRA HIGH RISK OR HIGHEST RISK IS SOMETHING THAT WE NEED TO START THINKING MORE ABOUT. ONE OF THE MOST IMMUTABLE FINDINGS IN PSYCHIATRY DISORDERS RUN IN FAMILIES. JUST THE FACT THAT PARENTS HAVE A HISTORY OF AFFECTIVE DISORDER OR DEPRESSION IS EXTREMELY IMPORTANT INFORMATION. I THINK DREXEL IS A RESEARCH ORGANIZATION AND I THINK IT PROBABLY -- ADD THIS TO THE MODEL, THINKING ABOUT CHILDHOOD AND ADOLESCENT PREDICTORS THAT WOULD POINT US MORE TOWARDS KIDS THAT ARE AT EVEN HIGHER RISK FOR THINKING ABOUT THESE CONDITIONS. SO I WANTED TO PUT IN A PLUG FOR THAT. IT'S NOT OUTSIDE OF WHAT WE THINK ABOUT IN PSYCHIATRY. DIANA ROBBINS AND DREXEL IS THINKING ABOUT EARLY DETECTION OF AUTISM, THIS IS REALLY JUST A STEP BEYOND THAT TO START THINKING ABOUT HOW ARE WE GOING TO PREDICT COMORBID OR SO-CALLED COMORBID CONDITIONS IN AUTISM. THANKS. >> THANKS, JOSEPH. AND I THINK THAT GETS TO ONE POINT I WAS MAKING EARLIER ABOUT THE NATURE OF THE RESEARCH PORTFOLIO AND THOUGHTS THAT WERE MADE, A LOT OF WORK DONE IN EARLY DETECTION OF AUTISM NOT JUST TRYING TO FIGURE OUT -- NOT REALLY AT ALL NECESSARILY ABOUT PREVENTION BUT MAKING SURE WE CAN GET TREATMENT TO THOSE THAT NEED IT EARLY ENOUGH TO LEAD FULFILLING LIVES. AND YOUR POINT ABOUT TRYING TO PREDICT DIFFERENT OUTCOMES WITHIN AUTISM IS ALSO A PART OF THE RESEARCH PORTFOLIO THAT WE WANT TO SUPPORT IN ORDER TO BE ABLE TO DIRECT TREATMENTS THERE. THAT SAID, WE HEARD A CALL ABOUT THE NEED FOR MORE TREATMENT WITHIN MENTAL HEALTH IN AUTISM. JALYNN, I'M GOING TO YOU NEXT BECAUSE YOU'VE BEEN TRYING TO RAISE YOUR HAND AND CAN'T GET THAT TO WORK AND THEN WE'LL COME BACK TO DENA. >> THANK YOU KINDLY. I WANT TO COMPLIMENT LINDSEY ON COMMENTS, I HAVE HIGHEST REGARD FOR HER AND HER INTELLECT. I TALKED TO DR. SHORE KNOWING THIS WAS A PRESENTATION, I'M DELIGHTFULLY SURPRISED SOME THINGS INCLUDED IN IT ARE INCLUDED IN IT. WE FELL INTO AN INTERESTING SITUATION A WHILE AGO, OUR FOUNDATION ACTUALLY IS MORE LIKE AUTISTICA, WE HAD A FARM FALL INTO OUR LAPS SEVEN YEARS, 400-ACRE FARM OUTSIDE WASHINGTON, D.C. AND WE THOUGHT WE NEEDED TO LEARN TO BE FARMERS BUT WE LEARNED MANY, MANY, MANY OTHER LESSONS. AND WE LEARNED ABOUT THE HEALTH AND WELLNESS FOR SO MANY OF THOSE THAT HAPPENED TO COME OUT TO OUR AREA. WE'RE DEDICATED FIRST TO THOSE WITH AUTISM. WE DO HAVE IDD, WORKED WITH VETERANS, BECAUSE THIS IS VERY INTENTIONAL TO HAVE AN INTEGRATED SITUATION. WE HAVE THERAPEUTIC RIDING, GENERAL WELLNESS, JOB READINESS, COMMUNITY ENGAGEMENT. ALL OF THOSE THINGS PLAYING INTO GOOD MENTAL HEALTH AND WELLNESS BECAUSE PEOPLE ARE GETTING TO KNOW OTHER PEOPLE OUTSIDE OF THEIR CIRCLES IN A FRIENDLY ENVIRONMENT. AND THOSE THAT ARE WORKING ON WORK READINESS PROJECTS ARE DOING MANY OF THE THINGS THAT WERE LISTED IN I THINK NUMBER 3 BEING OUTDOORS, BEING ENGAGED IN THINGS OUTSIDE, BEING INVOLVED WITH YOGA. WE HAVE GOAT AND MINI HORSE YOGA, ALL SORTS OF TYPES OF THINGS AND FOUND OUT ESPECIALLY DURING COVID AND I WISH WE WOULD HAVE HAD MORE INSIGHT INTO A PANDEMIC, ABOUT KEEPING RECORDS, ABOUT HOW PEOPLE HAVE REACTED THAT HAD BEEN COMING TO RECEIVE DIFFERENT SERVICES OR ENGAGE WITH US OR COMMUNITY EVENTS. DURING COVID EVEN HAD ZOOM CALLS BETWEEN RIDERS AND HORSES WHEN THEY COULDN'T COME OUT. PEOPLE WOULD UNDERSTAND THAT THEIR ANIMALS WERE STILL THERE. WHICH WAS GREAT COMFORT. WE HAD SAFARIS IS AND PEOPLE CAME IN CARS AND SAW THE ANIMALS. THE RELEASE AFTER THE TENSION AND BEING CONFINED AND BEING OUTSIDE IN A SAFE WAY AND PARTICIPATING WITH OTHERS, WITH NATURE, IS ALSO BRANCHED INTO SOMETHING ELSE. THE CURB CUT WAS PUT INTO USE FOR INDIVIDUALS THAT HAD A HARD TIME WITH MOBILITY. WHO UTILIZED IT NOW? THOSE WITH STROLLERS, SUITCASES, VENDORS, BICYCLES. IT'S AN ANSWER FOR ONE SITUATION THAT IS ANSWERING MANY OTHERS. AND WE HAVE FOUND WITH THE HEALTH AND WELLNESS TARGETED TOWARD THE AUTISTIC POPULATION HAS BEEN HELPING OTHERS BECAUSE WE STARTED SOMETHING FOR FIRST RESPONDERS, THOSE ISOLATED IN CRITICAL CARE UNITS, THOSE BEHIND THE WHEEL IN AMBULANCES, POLICE OFFICERS, EVERYTHING THAT WENT THROUGH THEIR LIVES HERE IN THE WASHINGTON, D.C. AREA. AND THEY HAVE BEEN ABLE TO COME OUT TO THE FARM AND ENJOY A DAY OF REENVISIONS WHO THEY ARE, BEING EMPOWERED, AND HAVING A RELEASE THAT HAS HELPED THEM WITH THEIR MENTAL HEALTH. AND I WOULD SAY THAT THE PEOPLE THAT WE'RE WORKING WITH ON THE FARM, WITH AUTISM, HAVE REPORTED TO US BETTER ATTITUDES THAN MY ASSOCIATES WHO HAVEN'T HAD THE OPPORTUNITY TO PARTICIPATE IN OUTDOOR ACTIVITIES. AND DOING DIFFERENT THINGS OF THAT NATURE. SO THE MENTAL HEALTH ISSUES CAN OFTEN BE ADDRESSED BY SOFTER THINGS. IT'S NOT ALWAYS MEDICATION. IT'S BEING OUT AND DOING AND PARTICIPATING AND HAVING MORE ENVIRONMENTS WHERE PEOPLE ARE ACCEPTED INTO COMMUNITY AND HAVE INTEGRATION WITH OTHERS WITH NATURE AND WITH ANIMALS. WE'VE GOT HORSES, GOATS, EVERYBODY LOVES BEAUTIFUL HORSES, CHICKENS THAT YOU CAN PUT ON A LEASH IF YOU WANT TO. IT'S INTERESTING AND PROVIDES SOMETHING THAT PEOPLE NEED THAT IS BEYOND THEIR OWN COMPUTER SCREEN OR BEYOND THEIR OWN HOMES. AND I WISH THERE WERE MORE OPPORTUNITIES AROUND THE COUNTRY SO PEOPLE COULD HEAL THE WAY WE'VE HAD THE OPPORTUNITY TO SEE PEOPLE HEAL OVER THE LAST SEVERAL MONTHS. >> THANK YOU. YOU MENTIONED LINDSEY, I WANT TO INSERT A COMMENT BEFORE MOVING TO DENA. MY COMMENT OR QUESTION, I WANT TO ACKNOWLEDGE AND THANK THE PRESENTERS FOR GREAT AND INFORMATIVE PRESENTATION ON A TOPIC THAT'S IMPORTANT ESPECIALLY WHEN IT'S BECOME AN EMPHASIZED ISSUE AS A RESULT OF THE COVID-19 PANDEMIC. I'M MINDFUL OF INCLUDING AUTISTIC PEOPLE AS STAKEHOLDERS IN THIS PROJECT. DENA? >> I'M TRYING TO GET ORIENTED HERE, I CHECKED OUT FOR A MINUTE. I WANT TO SAY AS ONE OF THE COMMUNITY MEMBERS ON THE PROJECT THAT THE FIRST THING I WANT TO CHAMPION STEPHEN AND TEAL WITH IS THIS SYSTEM FOR COMMUNICATION, THE E-MAIL SYSTEM, HAVING TASKS CLEARLY DELINEATED HAS NOT ONLY HELPED ME WITH THIS PROJECT BUT I'VE CARRIED THAT INTO OTHER GROUPS I WORK WITH BECAUSE IT'S SO EFFECTIVE AND SO MUCH MORE ORGANIZATIONALLY DEFINED FOR PEOPLE WHO STRUGGLE WITH DEADLINES, PEELING OUT OF THE CONTENT WHAT'S IMPORTANT FROM WHAT'S NOT. I DID WANT TO BRING UP AND OVERLAP FROM ANOTHER WEBINAR AND OTHER RESEARCH I'VE BEEN PART OF. IN THE PRESENTATION BY JESSICA THERE WAS A DISTINCT OVERLAP IN REPORTING BASIC NEED DEFICITS OF PEOPLE EXPERIENCING WITH REPORTING ABOUT EFFECTS OF COVID-19 ON THE IDD COMMUNITY. SPECIFICALLY, 54% OF PEOPLE -- I HAVE TO GO TO MY SLIDE OR I WON'T REPORT CORRECTLY, 54% OF FAMILIES REPORTED EMPLOYMENT CHANGES BECAUSE PROGRAMS SHUT DOWN, LOSS OF P.T., LOSS OF JOB COACHING, ORGANIZATIONAL SHUTDOWNS SO THEY LOST THEIR JOB COACHES, AND THERAPEUTIC SUPPORT, AND THEN INCREASED TRANSPORTATION ISSUES. AND THIS WAS A VERY PRIVILEGED POPULATION WE SAMPLED. BUT IF IT WAS THAT BAD FOR PRIMARILY WHITE COMMUNITY THAT RESPONDED, I CAN ONLY BEGIN TO IMAGINE WHAT IT WAS LIKE FOR OTHER PEOPLE WITH OTHER MARGINALIZATIONS. AND THEN I WANTED TO ADD THAT ANOTHER RESEARCH ARTICLE BY TURK ET AL. DEMONSTRATED BECAUSE MUCH COVID-19 51% OF PEOPLE EXPERIENCED LOSS OF INCOME, 38% HAD DIFFICULTY PAYING USUAL HOUSE HOLD EXPENSES, 12% INCREASED FOOD INSECURITIES, 33% REPORTED HOUSING ISSUES, AN OVERLAP AS WE'RE ADDING RESEARCH ABOUT COVID. IN TERMS OF UTE LIESING DATASETS IT'S REALLY IMPORTANT FOR US AS WE'RE ANALYZING THEM TO KEEP IN MIND THESE DATASETS DEPEND ON A COUPLE FACTORS WE CAN'T PREDICT. NUMBER ONE, WE DON'T KNOW THAT THE PEOPLE WHO ARE IN THESE HOSPITAL SETTINGS OR THESE ENVIRONMENTS WE'RE DRAWING DATA FROM EVEN THOUGH THEY ARE ON THE SPECTRUM THEY MAY HAVE BEEN MISDIAGNOSED. WE HAVEN'T BEGUN TO LOOK AT MEDICAL MALTREATMENT AND THE ISSUES ASSOCIATED WITH MISDIAGNOSIS, AND THEN WE HAVE TO REMEMBER IF THE PRESENTING ISN'T AUTISTIC BEHAVIORAL ISSUE IF THEY COME IN BECAUSE THEY HAVE BEEN IN A CAR ACCIDENT WE MAY NOT GET THAT INFORMATION. YOU HAVE TO GUESSTIMATE THEY ARE SKEWED A LITTLE BIT TO CONSIDER THESE AREAS WHERE WE'RE NOT ABLE TO GET MEANINGFUL ACCESS TO THE LEGITIMATE INFORMATION. IT'S THE BEST WE CAN DO BUT WE HAVE TO KEEP THAT IN MIND. THANK YOU. >> THANK YOU. SCOTT? >> THANKS, DR. GORDON. THANKS TO PRESENTERS FOR YOUR SHARING THIS REALLY IMPORTANT WORK IN TERMS OF IMPROVING RESEARCH AND IN TERMS OF RESEARCH UNDERSTANDINGS AND IMPROVING WHAT WE'RE DOING IN PRACTICE AND SUPPORTS IN MENTAL HEALTH AND WELL BEING, AND I THINK A LOT OF THESE FOCUSES RESONATED AS FAR AS TRAUMA-INFORMED CARE, BETTER PARTNERSHIP AND COLLABORATION WITH AUTISTIC PEOPLE IN RESEARCH, THINKING ABOUT POSITIVE APPROACHES ON MENTAL HEALTH AND FOR US AT THE DEPARTMENT OF LABOR THAT THIS IS ESPECIALLY OF INTEREST ON IMPROVING ACCESS TO GAINFUL EMPLOYMENT BECAUSE EMPLOYMENT IS A CERTAINLY DETERMINANTS OF HEALTH AND IN THE OTHER DIRECTION FOLKS -- WORKERS ACCESS TO AUTISTIC WORKERS ACCESS TO HEALTH CARE SUPPORTS CAN BE A DIFFERENCE IN TERMS OF MAINTAINING JOBS, ADVANCING CAREER PATHWAYS SO THIS IS IMPORTANT TO INFORMING WHAT WE'RE DOING INCLUDING RESEARCH PROJECT ON AUTISM AND EMPLOYMENT. I WANT TO HIGHLIGHT BRIEFLY ON THE POSITIVE PSYCHOLOGY THE RESEARCH LITERATURE IS LIMITED ON OPTIMISM, RESILIENCE, POSITIVE ELEMENTS, AUTISTIC PEOPLE CAN DO AND OTHERS CAN DO TO HELP SUPPORT ADVANCEMENT ON POSITIVE ELEMENTS OF MENTAL HEALTH AND WELL-BEING THAT I THINK WE NEED TO MAKE BETTER STRIDES WITH THAT. I SUGGESTED SHOULD BE SOMETHING THAT MAYBE COULD BE EMPHASIZED IN THE STRATEGIC PLAN TO PRIORITIZE WHEN IT COMES TO MENTAL HEALTH-RELATED RESEARCH AND AUTISM TO MAKE SURE THERE'S MORE EMPHASIS ON THE POSITIVE PSYCHOLOGY AND IT'S NOT JUST LIMITED TO AUTISM. OVER THE LAST DECADES, POSITIVE PSYCHOLOGY HAS BEEN A VERY SMALL PIECE AT TIMES OF MENTAL HEALTH RESEARCH BUT SOMETHING THAT WE CAN MAKE SOME STRIDES IN THAT AREA. AND LASTLY BRIEFLY THE OF -- I LIKE PRIVATE SETTINGS, SOMETIMES PUBLIC SETTINGS RUN BY, SAY, STATE GOVERNMENT HAVE TRAINING, IN PENNSYLVANIA AND OTHER STATES, OFTEN PRIVATE SETTINGS WRITE IN SOME CASES ARE FOR PROFIT ORGANIZATIONS RUNNING THEM RATHER THAN NON-PROFITS THERE IS OFTEN NOT GOOD TRAINING ON DISABILITIES THAT LEADS TO MAJOR MARGINALIZATION, TRAUMA, BARRIERS FOR FOLKS IN INPATIENT SETTINGS. CAN YOU SPEAK TO ANYTHING YOU'RE DOING RIGHT NOW AND THAT INFORM WORK ON REPORT AND RELATED ACTIVITIES OR OTHER ACTIVITIES THAT MAY BE COMING UP THAT MAY HAVE THAT FOCUS ON INPATIENT SETTINGS AND INCREASING KNOWLEDGE AND UNDERSTANDING FOR TRAININGS FOR INPATIENT SERVICE PROVIDERS FOR MENTAL HEALTH TO SUPPORT, EMPOWER AUTISTIC PEOPLE AND FOLKS WITH DEVELOPMENTAL DISABILITIES IN THOSE SETTINGS? >> WOULD ANYONE LIKE TO COMMENT ON THE INPATIENT QUESTION? >> I CAN SAY A LITTLE BIT. THIS IS -- THE DATA IS FROM ALL TIMES OF HOSPITALS, COVERAGE IS ABOUT 97% OF THE U.S. SO IT'S A PRETTY GOOD REPRESENTATIVE OF WHAT'S HAPPENING IN INPATIENT HOSPITALIZATION FOR AUTISTIC PEOPLE. AND YOUR COMMENT IS WELL RECEIVED THAT THIS IS LIKELY NOT A FULL CAPTURE OF PEOPLE WHO ARE AUTISTIC IN HOSPITAL. WE ARE DOING WORK WITH THIS DATA AND INTERESTED IN EXPERIENCES. THIS DATA IS A LITTLE BIT LIMITED IN WHAT WE CAN KNOW ABOUT THEIR EXPERIENCE IN THE HOSPITAL. WE KNOW WHAT THEIR DIAGNOSES WERE AND WHAT PROCEDURES BUT THIS IS MORE IN THE CONTEXT OF PRIMARY CARE AND SPEAKS TO THE BIT ABOUT CRISIS CARE AND WHY PEOPLE END UP IN THE HOSPITAL AND HOW WE MAYBE COULD BE DIVERTING PEOPLE TO ANOTHER LOCATION IF THEIR MAIN CONCERN IS SOMETHING MENTAL HEALTH RELATED SO THEY CAN RECEIVE BETTER AND MORE APPROPRIATE CARE. DO YOU HAVE ANYTHING TO ADD, LINDSAY? >> YOU CAPTURED IT WELL, JESSICA. SCOTT, YOUR POINT AS SO OFTEN I FEEL THE POINTS YOU MAKE, VERY IMPORTANT BY WAY OF HOW WE ARE, AGAIN, LACKING RESEARCH TO HELP SUPPORT THE PEOPLE WHO ARE DOING THE REAL WORK EVERY DAY TODAY. NOT ABLE TO WAIT FOR THE RESEARCH, WHO REALLY NEED THIS DATA NOW AND NEED NOT JUST QUANTITATIVE BUT TESTED AND TRUE TRAINING SOLUTIONS. PAIRED APPROACH AND MOVING FORWARD IS TREMENDOUSLY URGENT. >> HARI, I HAVE YOU NEXT. PLEASE DO UNMUTE. THERE YOU GO. >> WONDERFUL SET OF PRESENTATIONS, ADVOCACY AND PRIORITIES. THANK YOU. IT'S SO TRUE WE DON'T HAVE MENTAL HEALTH PARITY FOR COVERAGE. RESEARCH HOSPITALS LIKE STANFORD AND UCSF DON'T TAKE STATE MEDICAID FOR MENTAL HEALTH. I'M COVERED BY MY DAD'S WORK INSURANCE BUT THAT -- MANY YEARS BACK DR. HARDEN SAID THAT PSYCHOTROPIC MEDS DON'T SEEM TO BE AS EFFECTIVE OR WORK THE SAME WAY IN AUTISTICS AS IN THE GENERAL POPULATION, YET THESE MEDS ARE SEEN AS THE FIRST LINE OF DEFENSE FOR ANY AUDISM BEHAVIOR, IF WE'RE MEDICATED WE NEED IT TO WORK WITH OUR PHYSIOLOGY, ALSO FACTOR IN MEDICAL COMORBIDITIED. THE OTHER CONCERN IS LONG TERM HEALTH EFFECTS, LONG TERM USE CAUSES LIVER DAMAGE, WE'RE ALREADY AT HIGHER RISK FOR NEUROPSYCHIATRIC DISORDERS. SO OLD AGE IS LOOKING SCARY ON TOP AS WE WILL HAVE TO FACE MORE ISSUES ON TOP OF EXISTING ONES AND SHRINKING SOCIAL SUPPORTS AS WE AGE THAT ECHO NEED FOR APPLYING ALTERNATIVES TO MEDICATION. >> THANK YOU, HARI. IVANOVA? >> A LOT OF THIS -- THIS IS IVANOVA SMITH. I WANTED TO SAY HAS THERE BEEN ANY RESEARCH TRYING TO FIND ALTERNATIVES TO INSTITUTIONALIZATION FOR CRISIS CARE, LIKE IF AN AUTISTIC PERSON IS HAVING A PUBLIC MELTDOWN, GAIN OF SUPPORT THAT ARE NOT INSTITUTIONAL LIKE PUTTING THEM IN AN INSTITUTIONAL WARD, GETTING THEM INTO AN OUTPATIENT SUPPORT, SERVICES TO HELP INSTEAD OF INSTITUTIONALIZING THEM. THANK YOU. >> THANK YOU. WOULD ANYONE FROM THE PANEL OR ANYONE ELSE LIKE TO RESPOND TO THAT QUESTION? >> I'M NOT DOING WORK RELATED TO THIS BUT IT'S AN IMPORTANT POINT AND AGAIN RELATED TO THE CRISIS CARE SYSTEM WE DON'T REALLY HAVE IN PLACE IN THE U.S. TO DEAL WITH IN GENERAL MENTAL HEALTH CRISES AND MORE SPECIFICALLY HOW THOSE INTERSECT WITH AUTISM. I DON'T HAVE EXPERTISE IN THAT AREA BUT I'VE SEEN SUGGESTIONS HOW THAT CAN BE CREATED SO THE SITUATION ISN'T QUITE SO POOR. >> NIMH HAS RESEARCH PORTFOLIO, I DON'T KNOW OFFHAND IF ANY STUDIES FOCUS ON AUTISM AND I DON'T KNOW IF LISA GELATI IS ON THE CALL OR ANYONE ELSE FROM NIMH WOULD WANT TO SPEAK UP? >> SUSAN, WHAT DID YOU SAY? >> LISA IS PROBABLY WATCHING ON VIDEOCAST, IT -- AND MIGHT NOT BE ABLE TO COMMENT. >> WE CAN GET THAT INFORMATION TO THE MEMBERS OF THE COMMITTEE. YETTA, I BELIEVE YOU'RE NEXT. >> I WANT TO THANK YOU FOR YOUR PRESENTATIONS, AND YOUR HARD WORK. UNFORTUNATELY DISPARITIES YOU MENTIONED ARE NOT SURPRISING TO ME PERSONALLY. THIS DATA FURTHER HIGHLIGHTS THERE'S MORE WORK TO BE DONE. WITH THAT SAID I MADE A POINT LITERALLY, WHERE IS THE STRATEGIC PLAN AND PRINTED IT OUT, AND LOOKED AT THE OBJECTIVES. I NOTICED MENTAL HEALTH WAS NOT SPECIFICALLY MENTIONED AND WOULD LIKE FOR MY IACC COLLEAGUES TO CONSIDER INCLUDING THAT OBJECTS I WAS -- OBJECTIVES TO INCLUDE MENTAL HEALTH. >> EXCELLENT POINT, I SEE SOME THUMBS UP FROM YOUR COLLEAGUES ON THE COMMITTEE. THIS IS ABOUT THE TIME WE PLANNED TO TAKE A BREAK. ARE THERE ANY OTHER COMMENTS OR QUESTIONS FOR OUR REALLY WONDERFUL PANELISTS WHO GAVE US A LOT TO THINK ABOUT? >> THANK YOU. >> I'LL ECHO THAT. THANKS, DE. >> THIS IS SCOTT. THANK YOU. >> THANK YOU VERY MUCH TO THE FOUR OF YOU FOR YOUR PRESENTATIONS. THE INFORMATION THEY CONTAINED AND THE PASSION THEY RELAYED. AND WE LOOK FORWARD TO THE OPPORTUNITY TO BE MORE INCLUSIVE OF THESE ISSUES IN THIS UPCOMING STRATEGIC PLAN. SUSAN, WE CAN AFFORD TO TAKE A BREAK NOW AND RETURN AT 4:45, AT WHICH POINT IN TIME WE WILL GO THROUGH ROUND ROBIN UPDATES. >> SO, YES, WE HAD SCHEDULED A FIVE-MINUTE BREAK, ORIGINALLY, BUT WE'RE AHEAD OF SCHEDULE. WE HAD TALKED ABOUT A LANGUAGE DISCUSSION. I DON'T KNOW IF WE WANT TO DECEIVER TO NEXT TIME, THAT MIGHT BE A LONGER DISCUSSION OR PREFER TO DO ROUND ROBIN. >> YEAH. >> I LEAVE THAT TO YOU TO DECIDE. >> MY RECOMMENDATION AS CHAIR THAT WE DON'T CUT OFF DISCUSSION WITH LANGUAGE TO COMPLY WITH THE TIME FRAME WE HAVE LEFT. THERE'S A LOT TO BE SAID ON THAT ISSUE. IF PEOPLE WANTED TO WE COULD COME BACK FIVE MINUTES EARLY AND TRY BUT I'M RELUCTANT TO DO SO GIVEN THE THAT THERE'S A LOT TO TALK ABOUT THAT. OKAY. NO ONE IS OBJECTING TO MY APPROACH. WE'LL TAKE -- IT'S 4:35, WE'LL RETURN AT 4:45. THOSE WHO WOULD LIKE TO ALERT THE COMMITTEE AS TO ANY UPDATES WITH YOUR ORGANIZATIONS OR WITH THE COMMUNITY IN GENERAL, YOU'LL HAVE AN OPPORTUNITY TO DO SO AND WE'LL CLOSE. AND FOR THOSE WHO MIGHT NEED TO LEAVE EARLY I'LL SAY RIGHT NOW OUR NEXT IACC FULL COMMITTEE MEETING WILL BE 10 A.M. WEDNESDAY JANUARY 19. AND IT WILL ALSO BE VIRTUAL. AND SO ANYWAY, WE'LL SEE YOU ALL IN TEN MINUTES. >> THANK YOU. IF YOU WANT TO READ OUR ROUND ROBIN UPDATES THEY ARE ON THE WEBSITE. WE HAVE SOME THAT WERE SUBMITTED IN WRITING. THANKS. I JUST WANTED TO FOLLOW UP ON THE DISCUSSION FROM YESTERDAY'S MEETING RELATING TO THE PRESENTATION FROM ASSISTANT SECRETARY WILLIAMS OF THE DEPARTMENT OF LABOR TO SHARE PREVIOUSLY WORKED AND ARE CONTINUING TO WORK WITH DEPARTMENT OF LABOR PARTICULARLY ODEP, OFFICE OF DISABILITY AND EMPLOYMENT POLICY, ON A NUMBER OF INITIATIVES AND ASSISTANT SECRETARY WILLIAMS AND COMMISSIONER MET LAST MONTH TO DISCUSS WAYS TO ADDRESS COMMON GOALS, MEETING THIS MONTH WITH A BROADER GROUP AT THE STAFF LEVEL. ODEP AND SSA COLLABORATED ON A NUMBER OF PROJECTS, AND WORKED WITH OTHER AGENCIES TO PROMOTE EMPLOYMENT AND WELL-BEING FOR ALL PEOPLE WITH DISABILITIES INCLUDING PEOPLE WITH AUTISM SPECTRUM DIAGNOSES. I'M HAPPY TO ANNOUNCE THAT DR. JEFFREY HAMETER, ASSOCIATE COMMISSIONER IN OFFICE OF RESEARCH DEMONSTRATION AND EMPLOYMENT SUPPORT OF SSA AGREED TO SPEAK AT THE NEXT IACC MEETING TO PRESENT WORK. I WANTED TO DRAW ATTENTION TO THE THIRD ITEM ON THE HANDOUT, ESSENTIALLY WE HAVE SOCIAL ADMINISTRATION LISTED OPEN REQUEST FOR INFORMATION, POTENTIAL DISABILITY INSURANCE AND SUPPLEMENTAL SECURITY INCOME DEMONSTRATIONS AND FEDERAL REGISTER, IF YOU LOOK YOU'LL SEE A LINK THERE AND THERE'S NEVER BEEN AN ASD SPECIFIC DEMONSTRATION, NOW IS THE OPPORTUNITY TO SHARE RECOMMENDATIONS RELATING TO THAT. THIS SEEKS PUBLIC INPUT ON POTENTIAL SERVICES TO SUPPORT OR POLICY CHANGES THAT COULD ACHIEVE THESE GOALS. THE INPUT WOULD INFORM DELIBERATIONS ABOUT POSSIBLE FUTURE DEMONSTRATIONS AND TESTS. IF YOU WOULD LIKE TO HAVE A SAY IN THAT, PLEASE SHARE YOUR COMMENTS AND THAT LINK IS IN THE ROUND ROBIN HANDOUTS, ENSURE COMMENTS ARE CONSIDERED WE MUST RECEIVE THEM NO LATER THAN NOVEMBER 16. >> THANK YOU. DIANA? >> I'M DIANA BIANCHI, DIRECTOR OF EUNICE KENNEDY SHRIVER, THREE UPDATES. I WANT TO INFORM YOU THAT NICHD HAS LAUNCHED THE STRIVE INITIATIVE, WHICH STANDS FOR STRATEGYS TO ENRICH INCLUSION AND ACHIEVE EQUITY, THE GOAL IS TO IMPROVE EQUITY, DIVERSITY, INCLUSION IN ALL ASPECTS OF OUR RESEARCH AND WORKFORCE. THREE THEMES IN ONE ENSURING EQUITY, DIVERSITY, INCLUSION, IN THE NICHD INTERNAL WORKFORCE, TWO IS ENHANCING OPPORTUNITIES FOR EQUITY, DIVERSITY, INCLUSION IN THE BROADER EXTRAMURAL SCIENTIFIC WORKFORCE AND THREE IS PLANNING, CONDUCTING, SUPPORTING HEALTH DISPARITIES RESEARCH. WE'VE HAD AN EXCELLENT SERIES OF FIVE WORKSHOPS, ALL RECORDED, THE LAST WAS HELD LAST WEEK. AND BASICALLY IF YOU GO TO THE STRIVE WEB PAGE YOU'LL SEE THE LINKS, RATHER THAN READ OFF A LONG WEB LINK YOU CAN FIND IT IF YOU JUST TYPE IN NICHD AND STRIVE INTO GOOGLE AND YOU'LL SEE THE PAGE COME UP. WE'RE ALSO LOOKING FOR IDEAS AND FEEDBACK TO INFORM RESEARCH ON HEALTH DISPARITIES ACROSS OUR ENTIRE PORTFOLIO FOR THE NEXT FIVE YEARS. THIS IS AN IDEA SCALE PLATFORM AND THAT I WILL READ TO YOU BECAUSE HTTPS://NICHD. IDEASCALE.GOV.COM, HASHTAG #CURRENT CAMPAIGN. I'LL CHIP IT -- I'LL TYPE IT IN THE CHAT BOX WHEN I'M DONE. THE SECOND THING JUST GOING LIVE YESTERDAY, A ABOUT INTRANASAL OXYTOCIN WHICH WENT LIVE LAST NIGHT. UNFORTUNATELY DESPITE ENCOURAGING DATA FROM SINGLE DOSE STUDIES AND ANIMAL STUDIES, OXYTOCIN TREATMENT DOES NOT APPEAR TO IMPROVE SOCIAL FUNCTIONING IN EITHER FLUENT FLUENTLY OR MINIMALLY VERBAL INDIVIDUALS. IT'S SAFE. DOESN'T CAUSE SIGNIFICANT ADVERSE EVENTS OR EFFECTS, THERE'S A SIGNIFICANT PLACEBO RESPONSE IN THE FIRST FOUR WEEKS THAT IS SIMILAR WITH BOTH TREATED INDIVIDUALS AND THOSE WHO RECEIVED PLACEBO. IT'S POSSIBLE THE DAILY TREATMENT FOR 24 WEEKS IS NOT OPTIMAL DUE TO THE BRAIN ATTEMPTING TO COMPENSATE FOR THE INCREASED PRESENCE OF EXTERNAL OXYTOCIN, AND THE BASELINE LEVEL OF PLASMA OXYTOCIN DOES NOT SEEM TO INFLUENCE WHO IS GOING TO RESPOND AND WHO WILL NOT RESPOND TO THE TREATMENT. WE DO KNOW THERE'S EVIDENCE OF THE EXOGENOUS OXYTOCIN TREATMENT GETS IN PLASMA AND INCREASES OXYTOCIN LEVELS, IT GETS THERE BUT DOES NOT SEEM TO AFFECT BEHAVIOR. GENETIC AND MODEL SYSTEMS DRIVERS TO UNDERSTAND THE MECHANISMS OF FUNCTION ARE STILL ONGOING. THE LAST THING I WANT TO MENTION IS THAT THE APPLICATION DUE DATE FOR THE AUTISM CENTERS OF EXCELLENCE CENTER AND NETWORK REQUEST FOR APPLICATIONS, DEADLINE IS NOVEMBER 9, COMING UP SOON AND ACE TEAM RELEASED ANSWERS. THE NICHD CONTACT IS DR. ALICE KAU ON THE WEBINAR, KAU@MAIL.NIH.GOV. IF YOU HAVE A QUESTION, PLEASE REACH OUT TO ALICE. THANK YOU. >> THANK YOU. ALYCIA? >> I ALSO HAVE FUNDING ANNOUNCEMENTS, FUNDING OPPORTUNITY ANNOUNCEMENTS AND A COMMENT ABOUT A TREATMENT. SO, THE AUTISM SCIENCE FOUNDATION HAS ANNOUNCED NEW AWARD CYCLE FOR NOT JUST PRE AND POST DOCTORAL FELLOWSHIPS BUT WE'VE ADDED A MECHANISM FOR POST UNDERGRADUATE. IT'S SIMILAR TO THE NIH POST BACCALAUREATE MECHANISM TO SUPPORT YOUNG OR JUNIOR LEVEL SCIENTISTS WHO MAY NOT GO ON TO GET A GRADUATE DEGREE BUT WANT TO STAY IN AUTISM RESEARCH ALTHOUGH WE ENCOURAGE GRADUATE DEGREE IN THE FIELD, ADJUSTED STIPEND LEVELS, DEADLINE DECEMBER 7, I ENCOURAGE GOING TO THE WEBSITE, RFAs AND INSTRUCTIONS HOW TO APPLY ARE RIGHT THERE ON THE ASF WEBSITE. SO PLEASE SPREAD THE WORD AND IF YOU KNOW ANYONE WHO MIGHT BENEFIT IN ONE OF THESE -- FROM ONE OF THESE AWARDS ENCOURAGE THEM TO APPLY. THE OTHER THING TO BRING TO THE IACC'S ATTENTION IS SOME NEW INFORMATION WITH REGARDS TO USE OF STEM CELL THERAPIES IN AUTISM. THESE ARE THERAPIES THAT RIGHT NOW DO NOT HAVE ENOUGH SCIENTIFIC BACKING TO SHOW THEY ARE EFFECTIVE FOR AUTISM BUT A COMPANY IS GOING FORWARD TO MARKET THEM AND CHARGE FAMILIES OUT OF POCKET FOR THEM. WE HOPE THAT THE IACC CAN WORK COLLABORATIVELY WITH THE FDA, TIFFANY IS AWARE OF THE SITUATION AND SHE'S ON THE IACC, BUT I WANTED YOUR IMPACT ON HOW THE IACC CAN WORK COLLABORATIVELY TO ENCOURAGE FDA TO MORE STRINGENTLY REGULATE THESE SORTS OF PRACTICES, OR AT LEAST WITHIN AUTISM SPECTRUM DISORDER, BECAUSE THE PARTICULAR COMPANY IS MOVING STRAIGHT FROM KIND OF MINIMAL OR EQUIVOCAL FINDINGS TO MARKETING. SO THAT'S MORE OF A QUESTION FOR YOU ALL AND A COMMENT. >> THANK YOU. LET ME ASK LISA TO ANSWER THE QUESTION I ASKED EARLIER, BEFORE GOING NEXT TO SUSAN RIVERA. I UNDERSTAND YOU'RE ON AND CAN YOU ANSWER THE QUESTION WITH REGARDS TO CRISIS SERVICE FOR AUTISM ADULTS WHETHER WE HAVE RESEARCH IN THAT AREA? IF YOU'RE SPEAKING YOU'RE MUTED. MAYBE YOU ARE NOT ABLE TO COMMENT. ALL RIGHT. WE'LL COME BACK TO YOU IF YOU CAN. SUSAN RIVERA? >> THANK YOU. I WANTED TO ANNOUNCE AND INVITE EVERYONE TO UC-DAVIS HOLDING OUR THIRD ANNUAL NEURODIVERSITY SUMMIT ON NOVEMBER 5 FROM 9 A.M. TO 12:30 P.M. CALIFORNIA TIME, PACIFIC TIME. VIA ZOOM WEBINAR. AND THIS IS A SUMMIT THAT'S GOING TO INCLUDE PRESENTATIONS AND PANEL DISCUSSION AND MODERATED DEBATE. IT RELATES SPECIFICALLY THIS YEAR TO NON-SPEAKING AUTISM, AND INTELLECTUAL DEVELOPMENTAL DISABILITIES. WE WILL HAVE PRESENTATIONS BY ERIC CARTER FROM VANDERBILT UNIVERSITY, UNIVERSITY OF VIRGINIA, PANEL DISCUSSION THAT WILL INCLUDE PARENTS, NON-SPEAKING AUTISTIC INDIVIDUAL AND INDIVIDUAL WITH INTELLECTUAL DISABILITY AND A REALLY EXCITING DEBATE ON NEURODIVERSITY THAT'S GOING TO INCLUDE INTERLOCUTORS SHANNON AND MATTHEW, AND WE'RE TACKING THE THE IDEA NEURODIVERSITY IS RELEVANT TO THOSE WHO ARE SPEAKING AND NON-SPEAKING AND AT ALL LEVELS OF INTELLECTUAL FUNCTIONING, AND WE'RE REALLY GOING TO DIRECTLY TACKLE THE ISSUE OF EXPERIENCES OF DISCRIMINATION AND STIGMA. I HOPE EVERYONE CAN JOIN US FOR THAT ON ZOOM WEBINAR ON NOVEMBER 5. >> THANK YOU VERY MUCH, SUSAN. I'LL ASK EACH OF THE SPEAKERS, FOUR MORE, THREE MINUTES, WHICH GIVES YOU EACH LESS THAN 45 SECONDS, SCOTT? >> THANKS, I'LL KEEP IT BRIEF. I WANT TO EMPHASIZE THAT WE'RE LOOKING FOR INPUT FOR THE RESEARCH PROJECT MENTIONED YESTERDAY BY ASSISTANT SECRETARY WILLIAMS HERE AT ODEP SO WE INVITE COLLABORATION AND IDEAS IN THE FUTURE AND I'M GLAD IDEA SCALE WAS MENTIONED BY ONE OF THE OTHER IACC MEMBERS, MAYBE THERE'S A POSSIBILITY TO DO AN ONLINE DIALOGUE IN THE FUTURE TO CONNECT WITH FOLKS OFFLINE. AND I WANT TO BRIEFLY MENTION, I DON'T KNOW IF WE CAN CONNECT OVER E-MAIL, SUGGESTIONS FOR SPEAKER FOR FUTURE IACC MEETING TO OVERLAP WITH STRATEGIC PLAN, IT HAS EMPLOYMENT IN THE FOCUS IS WHY I MENTION IT, IS THE NARROWNESS IS IN THE PROCESS, MAY HAVE ALREADY HIRED THE PERSON, STATE COORDINATOR FOR AUTISM TO HADN'T THEIR NEW STRATEGIC PLAN, AND IT'S GOING TO HAVE HEALTH AND WELLNESS FOCUS, EMPLOYMENT, ET CETERA, THE PRIORITY IS ESPECIALLY ON ADULTS, AND SO I THINK IT WOULD BE GREAT MAYBE AT A FUTURE MEETING ONCE THEY GET FURTHER ALONG IN THE PROCESS MIGHT BE PRETTY AWESOME TO HAVE IACC TO CONSIDER HAVING THAT AWESOME COORDINATOR TO PRESENT. >> AND I'LL ADD FOR ANYONE WHO HAS OTHER SUGGESTIONS FOR FUTURE SPEAKERS THEY CAN ALWAYS BE SENT AT ANYTIME VIA E-MAIL TO SUSAN OR STAFF. >> DENA? >> QUICK UPDATE, ZAK WILLIAMS AT VANDERBILT AND OTHER COLLABORATORS FROM AUTISTIC RESEARCHERS COMMITTEE IS GETTING CLOSER TO BEING ABLE TO DO A LAUNCH DATE FOR THE DATABASE OF AUTISTIC INDIVIDUALS INTERESTED IN EITHER DOING COLLABORATIVE RESEARCH AND RECRUITING PEOPLE WHO ARE AUTISTIC TO BE PART OF RESEARCH TEAMS OR TO OTHER WAYS ENGAGE THE AUTISM COMMUNITY. ONE OF THE CHALLENGES WE'VE BEEN FACING ACROSS THE BOARD IS NOT BEING ABLE TO DIVERSIFY REPRESENTATION AND SINGLE SOURCE SYSTEM WHERE OTHER COLLABORATORS COULD PLUG IN AND MAYBE BE PART OF RESEARCH, SO IF YOU'RE A RESEARCHER LOOKING FOR PEOPLE, WE'LL HAVE THAT LISTED THERE AND IF YOU'RE AN INDIVIDUAL WHO WANTS TO PARTICIPATE IN RESEARCH IN ANY CAPACITY, YOU DO NOT HAVE TO HAVE A DEGREE, OR COLLEGE TO PARTICIPATE, AND EACH ORGANIZATION OF COURSE IS GOING TO INDIVIDUALLY TALK TO YOU ABOUT WHAT THEY NEED AND WHAT THEY CAN PROVIDE. WE DO HAVE A STATEMENT OF COMPENSATION INVOLVED AS WELL. THANKS, EVERYBODY. >> THANK YOU. GREAT RESOURCE. I'LL MAKE SURE TO GIVE EVERYONE A CHANCE. THREE MORE SPEAKERS. JENNIFER? UNMUTE YOURSELF, *6. YOU'RE UNMUTED NOW. >> CAN YOU HEAR ME? >> YES. >> GREAT. REAL QUICK I WANT TO JUST ANNOUNCE SEVERAL NEW AWARDS WE MADE LAST MONTH, WE HAVE A SELF-ADVOCACY RESEARCH CENTER THAT WE AWARDED CONTINUES OUR WORK IN THAT AREA. WE AWARDED A GRANTS TO WORK ON BRIDGING AGING AND DISABILITY SERVICES. WE ARE ALSO FUNDING NEW PROJECTS, COMMUNITY COLLABORATIONS FOR EMPLOYMENT TO SUPPORT COMPETITIVE INTEGRATED EMPLOYMENT. AND THEN FUNDED GRANTS TO ADDRESS ISSUES OF DUAL DIAGNOSIS AND BRIDGING THE DD AND BEHAVIORAL/MENTAL HEALTH SYSTEMS IN STATES. WE HAVE INFORMATION ON THE WEBSITE ABOUT THOSE NEW AWARDS THAT WENT OUT IF YOU WANT MORE INFORMATION ABOUT THOSE. >> THANK YOU VERY MUCH, JENNIFER. SAM CRANE? >> HI, QUICKLY POINT, POINT, POINT. ASAN HAS A FEW NEW RESOURCES, ONE CALLED WHO'S IN CONTROL, THE TOOL KIT THAT LETS AUTISTIC PEOPLE UNDERSTAND BETTER HOW TO SELF-DIRECT SERVICES, RESOURCE WAS NATIONAL PARTNERSHIP FOR WOMEN AND FAMILIES ON REPRODUCTIVE HEALTH ISSUES THAT INTERSECT WITH DISABILITY. WE'RE ASKING PEOPLE TO SHARE THEIR COVID-19 VACCINE EXPERIENCES WITH US SO THAT WE CAN HELP, YOU KNOW, HELP OUR COMMUNITY ACCESS THIS VACCINATION SINCE AUTISTIC PEOPLE DO APPEAR TO BE AT HIGHER RISK FOR NEGATIVE OUTCOMES OF COVID-19. AND I KNOW THAT HARI WANTED TO RAISE THIS BUT DIDN'T HAVE TIME, HE'S DOING A STUDY ON THE EXPERIENCE OF AWE AMONG AUTISTIC PEOPLE, SO AUTISTIC PEOPLE WHO ARE INTERESTED IN PARTICIPATING IN THIS STUDY SHOULD REACH OUT TO HIM IF THEY ARE INTERESTED IN PARTICIPATING. IT'S A VERY FUN SURVEY I'VE ALREADY TAKEN MYSELF. >> THANK YOU, SAM. LAST BUT NOT LEAST WALTER KOROSHETZ, NINDS. >> THANKS VERY MUCH, TWO QUICK THINGS. PEOPLE REMEMBER WORKSHOPS ON G.I. DYSFUNCTION AND AUTISM, NEURODEVELOPMENTAL DISORDERS, NOW A CALL FOR GRANTS BY NINDS AND NICHD AND NATIONAL INSTITUTE, NIDDK, AND WHO TRIAL MEDICATION TRIALS, IN CONDITIONS THAT LEAD TO AUTISM, ONE IS TUBEROUS SCLEROSIS, ONE IS FRAGILE X, REPORTING OUT EARLY NEXT YEAR. THANKS. >> WELL, THANK YOU, EVERYONE. VERY MUCH. LOOKING FORWARD TO SEEING YOU IN JANUARY. SUSAN, CLOSING WORDS? >> YES, FLASH THE NEXT SLIDE. I HAD A SLIDE TO ACKNOWLEDGE THE OARC STAFF FOR THEIR WORK IN GETTING THIS MEETING TOGETHER AND TO THE CONTRACTOR AND OTHER NIMH STAFF HELPFUL AND NIH VIDEOCAST, AND NEXT SLIDE IS JUST THE NEXT MEETING. WE'RE GOING TO HAVE OUR NEXT MEETING JANUARY 19, PLEASE JOIN US. IN BETWEEN RESPOND TO OUR RFI IF YOU'RE A MEMBER OF THE PUBLIC. WE'LL SEND THE MEMBERS THEIR OWN SPECIAL RFI. THANK YOU SO MUCH. >> WE'RE LOOKING -- IS THAT GOING TO BE IN PERSON IN JANUARY? >> NO, COMPLETELY VIRTUAL. >> WE APOLOGIZE, BUT THE FEDERAL GOVERNMENT STILL HASN'T OPENED UP FOR MEETINGS AT THIS POINT. GIVEN THE NEED TO PLAN AHEAD, WE HAVE TO PLAN FOR VIRTUAL MEETING. HOPEFULLY THE ONE THEREAFTER, WE'LL SEE. >> AUTISM AWARENESS MONTH IN APRIL, MAYBE COULD BE IN PERSON. THANK YOU. >> ALL RIGHT. >> THANK YOU ALL FOR YOUR STAFF, DR. DANIELS, AS YOU EMPHASIZED THAT I THINK KEEPING THE TRAINS RUNNING, ET CETERA, IN TERMS OF COORDINATION OF THE MEETING I THINK A LOT OF FOLKS DO THINGS BEHIND THE SCENES THAT NOT EVERYBODY KNOWS. WE ALL APPRECIATE THE HARD WORK YOU ALL DO AT HHS AND SPECIALLY NIH TO ORGANIZE THE IACC AND ITS VERY IMPORTANT AND WE APPRECIATE IT VERY MUCH. >> THANKS FOR THE KIND WORDS. THANK YOU.