>> WE'RE GOING TO GET STARTED. WE HAVE AN ACTION PACKED AFTERNOON. AND WE'RE GOING
TO START WITH PUBLIC COMMENTS AND I'M GOING TO TURN IT OVER TO ROHINI TO START US OFF.
>> OK WE HAVE SIX PUBLIC COMMENTS TODAY. THE FIRST IS FROM ASHLEY HELSING. I BELIEVE BOTH
MICROPHONES ARE WORKING BUT FEEL FREE TO SPEAK FROM THAT ONE THERE IN THE FRONT.
>>THANK YOU SO MUCH. I'M ACTUALLY PRESENTING COMMENTS ON BEHALF OF DAVID EAGEN FROM NORTHERN
VIRGIA WHO UNFORTUNATELY COULDN'T 'AKE IT TODAY. BUT HE DID WANT ME TO MAKE THESE COMMENTS
ON HIS BEHALF. MY NAME IS DAVID EAGEN AND I'M EXCITED TO BE HERE AT THE ADVISORY COUNCIL
OCTOBER MEETING WITH YOU ALL TODAY. THANK YOU SO MUCH FOR HAVING ME. THE NATIONAL DOWN
SYNDOME SOCIETY, THE LEADING HUMAN RIGHTS ORGANIZATION FOR ALL INDIVIDUALS WITH DOWN
SYNDROME IS EXCITED TO ANNOUNCE THE PUBLICATION OF OUR NEWEST RESOURCE FOR THE DOWN SYNDROME
COMMUNITY. DURING THE FIRST WEEK OF NOVEMBER IN HONOR OF NATIONAL FAMILY CAREGIVERS MONTH,
NDSS WILL INTRODUCE ALZEIMER'S DISEASE AND DOWN SYNDROME: A PRACTICAL GUIDEBOOK FOR CAREGIVERS.
THIS BOOKLET WAS WRITTEN TO EMPOWER CAREGIVERS AND FAMILIES WITH KNOWLEDGE AND GUIDANCE ABOUT
THE CONNECTION BETWEEN DOWN SYNDROME AND ALZHEIMER'S DISEASE. HOW TO CAREFULLY AND THOUGHTFULLY
EVALUATE CHANGES THAT MAY BE OBSERVED WITH AGING AND HOW TO ADAPT AND THRIVE WITHIN AN
EVERCHANGING CAREGIVING ROLE WHEN A DIAGNOSIS IS MADE.
PEOPLE WITH DOWN SYNDROME ARE NOW GOING TO COLLEGE, GETTING COMPETITIVE JOBS, GETTING
MARRIED, LIVING FULL LIVES AND WE KNOW THIS GUIDE WILL BE AN AMAZING RESOURCE FOR THE
CAREGIVERS OF THOSE WITH DOWN SYNDROME AS WE AGE.
THANK YOU SO MUCH AGAIN. >> THANK YOU, ASHLEY.
UP NEXT IS MARY HOGAN. >> AFTER MARY WE HAVE MATT JANEKE.
>> GOOD AFTERNOON, I'M MARY HOGAN, AND I'M HAPPY TO BE HERE.
I WANT TO WELCOME ALL OF THE NEW MEMBERS AND DR. GATLIN FOR YOUR JOINING US IN THIS NEW
LEADERSHIP ROLE. MY NAME IS MARY HOGAN, I HAVE BEEN COMING
TO THIS MEETING SINCE 2011. I WAS BROUGHT HERE BECAUSE I HAD A BROTHER
WHO HAD DOWN SYNDROME, HE WAS DIAGNOSED TEN YEARS AGO THIS NEXT MONTH.
HE DIED IN 2010 OF COMPLICATIONS OF RESPIRATION PNEUMONIA.
IT WAS A DIFFICULT ENDING, AND FILLED WITH ALL KINDS OF BUMPS IN THE ROAD.
SO FOR THE PAST SIX YEARS I'VE COME IN AN ATTEMPT TO FACILITATE INCREASED ATTENTION
TO PEOPLE WITH DOWN SYNDROME AND I THINK WE'VE MADE A LOT OF PROGRESS.
I'M VERY GRATEFUL FOR THAT. I THINK THE BEST DISCUSSION THIS MORNING COVERED
TOPICS THAT ARE REALLY GERMANE NOT ONLY TO THE GENERAL POPULATION BUT TO PEOPLE WITH
INTELLECTUAL DISABILITIES, SPECIFICALLY DOWN SYNDROME.
WE CONTINUE TO HAVE LOTS OF ISSUES AROUND DIAGNOSES.
WE CONTINUE TO HAVE FEW OPPORTUNITIES FOR SPECIALIZED CLINICS FOR PEOPLE WITH DOWN SYNDROME,
SO THAT THE DIAGNOSIS DIFFERENTIAL DIAGNOSIS IS REALLY HARD TO ASCERTAIN, AND PEOPLE ARE
OFTEN IDENTIFIED VERY LATE IN THE DISEASE PROCESS.
I THINK IT'S IMPORTANT FOR THE NEW MEMBERS TO UNDERSTAND THAT MOST PEOPLE WITH INTELLECTUAL
DISABILITIES LIVE WITH THEIR FAMILIES AND I THINK IT'S A REALLY CHALLENGING TASK FOR
US TO ADDRESS THE NEEDS OF PEOPLE IN THEIR HOMES AND PEOPLE THAT LIVE IN CONGREGATE LIVING
LIKE GROUP HOMES. HOW ARE WE GOING TO BE CREATIVE ABOUT MAKING
SURE THAT WE'RE PROVIDING THE KIND OF SUPPORTS IN THOSE SETTINGS DESPERATELY NEEDING AND
IF WE'RE PROVIDING SUPPORT HOW DO WE KNOW WE'RE IMPROVING THE KIND OF CARE PEOPLE ARE
RECEIVING. THE NTG IS A VOLUNTEER ORGANIZATION THAT I'M
PART OF THAT MATT JANEKE WILL TALK TO YOU ABOUT.
WE'VE DONE A LOT OF TRAINING ACROSS THE UNITED STATES BUT THERE WERE ALSO ALWAYS QUESTIONING
HOW WE ASSESSED WHETHER OR NOT WE'RE MAKING CHANGES IN THE LIVES OF PEOPLE WITH INTELLECTUAL
DISABILITIES. ABOUT FOUR YEARS AGO, I BEGAN TO BE A STORYTELLER,
AND I TOLD YOU I THINK I BEGAN FOR YEARS TELLING YOU ABOUT THE CRISIS THAT OLDER FAMILY CAREGIVERS
ARE FACING. FOR THE PAST FOUR YEARS I'VE BEEN TELLING
BUT BETTY, FRANK AND RICHARD. I HOPE I WITH MAINTAIN MY COMPOSURE.
I TALKED ABOUT THE CRISIS, SPECIFICALLY AROUND ACCESS OF SUPPORT SERVICES FOR FAMILY MEMBERS,
AS THEY AGE. WHEN I STARTED FOUR YEARS AGO, THAT WOULD
HAVE BEEN MADE BETTY 84, AND FRANK 89, RICHARD 47.
AND I'VE TAKEN YOU THROUGH HIS JOURNEY AND FOR THOSE WHO HAVEN'T BEEN THERE, YOU'VE MISSED
I THINK A REALLY LOVING STORY. BUT RICHARD HAS CONTINUED TO DETERIORATE OVER
THE COURSE OF FOUR YEARS. HE LIVED WITH HIS FAMILY AS LONG AS POSSIBLE.
AND WHEN THEY FELT HE WAS NO LONGER SAFE HE MOVED WHO WHAT WAS AN INSTITUTIONAL SETTING
WHERE HE REMAINED FOUR YEARS. BETTY AND FRANK MOVED AT THE RIPE OLD AGES
OF 84 AND 87, SO THAT THEY COULD BE CLOSER TO RICHARD, AND CONTINUE TO ADVOCATE FOR HIM.
AND THEY HAVE BEEN VERY PRESENT IN TERMS OF HIS CARE.
I THINK RICHARD RECEIVED VERY SUPPORTIVE CARE BUT I THINK THERE WERE LOTS OF CHALLENGES
IN TERMS OF UNDERSTANDING HIS NEEDS AS HE DECLINED AND THERE WILL ALWAYS BE QUESTIONS
ABOUT WHAT DID WE MISS IN TERMS OF PROVIDING HIM THE KIND OF SUPPORT HE NEEDED.
WHEN I CAME LAST TIME, I TOLD YOU THAT RICHARD HAD BEEN TRANSITIONED TO A FEEDING TUBE.
DESPITE LOTS OF DISCUSSION ABOUT THE PROS AND CONS OF THE FEEDING TUBE.
AND AFTER THE INSERTION OF THE FEEDING TUBE, RICHARD HAD NOTHING BUT ONE CHALLENGE AFTER
ANOTHER, DEVELOPED ASPIRATION PNEUMONIA, AND THEN HE PASSED AWAY ON AUGUST 31, HE WAS
51 YEARS OLD. SO PRIOR TO THE ONSET OF THE DISEASE, RICHARD
LED A REALLY ACTIVE LIFE. HE WAS A BOWLER, LOVED TO FISH, COULD RIDE
A BICYCLE, WORKED IN A RECYCLING CENTER, NEVER MET A STRANGER THAT HE DIDN'T KNOW.
HE WAS JUST A REALLY GARRULOUS KIND OF GUY WHO BROUGHT LOVE INTO HIS FAMILY.
BETTY AND FRANK, NOW 93 AND 88, ARE EXPERIENCING A PROFOUND SENSE OF LOSS AT RICHARD'S PASSING.
AND SORT OF REDEFINING WHAT DO DO YOU WITH THE REST OF YOUR LIFE WHEN YOU'VE BEEN CAREGIVERS
FOR 65 YEARS OR SO. THEY WERE RECENTLY COMFORTED BY ONE OF RICHARD'S
PEERS WHO SAID TO THEM, I CRY FOR YOU. AT RICHARD'S BURIAL HE WAS HE IT A BIG TEN
TEAM HE SUPPORTED. I WON'T MENTION THE TEAM BUT THE COLOR WAS
RED. RICHARD WAS AN AVID SUPPORTER OF THIS TEAM,
AND HIS BURIAL EVERYONE WAS DRESSED IN RED AND BECAUSE RICHARD WAS A RECIPIENT OF MANY
SPECIAL OLYMPICS MEDALS EVERYONE WAS AWARDED A SPECIAL OLYMPIC MEDAL AND SANG THE FIGHT
SONG FOR THE TEAM AS HIS FAMILY CELEBRATED HIS PASSAGE.
SO, YOU KNOW, I'M HERE ONCE AGAIN JUST TO REMIND OF YOU THIS VERY IMPORTANT GROUP OF
TEAM, THEY BRING MEANING TO THEIR COMMUNITIES. THEY ARE PEOPLE.
AS THE FELLOW SAID THE OTHER DAY AT THE CONGRESSIONAL MEETING, WE ARE PEOPLE.
WE ARE A PERSON, YOU NEED TO CONSIDER US AND OUR NEEDS ACROSS OUR LIFE PAN AND CHAMPION
FOR US. YOU FOLKS AT THE TABLE HAVE CHAMPIONED FOR
US BEFORE AND I'M ASKING THE NEW FOLKS TO CONTINUE TO BE CHAMPIONS FOR US.
I'M GOING TO SHARE ONE THING WITH YOU. BETTY AND FRANK HAVE SPENT COUNTLESS HOURS
CONSOLING THEMSELVES WITH PICTURES AND STORIES AND LOOKING AT MILESTONES THAT RICHARD MET.
AND I THINK THE MOST PROFOUND MILESTONE WAS FOUND IN A PILE OF PAPERS THAT THEY WERE LOOKING
AT. IT CAME FROM AN ARTICLE IN A NOW DEFUNCT LOCAL
NEWSPAPER, IT INCLUDED A PHOTO OF 5YEAROLD BOY, RETARDED YOUTH NEEDS A HOME, THE BYLINE.
45 YEARS LATER BETTY AND FRANK CELEBRATE THE GIFT OF RICHARD, AND I WOULD SAY THAT RICHARD
REALLY FOUND A HOME. SO I THANK YOU.
>> THANK YOU, MARY. MATT AND IAN.
>> IT'S HARD TO FOLLOW MARY'S PRESENTATION. PLEASURE TO HEAR YOU, MARY.
I ALONG CAN MY COLLEAGUES KELLER, NATIONAL TASK GROUP ON INTELLECTUAL GROUP AND INTELLECTUAL
PRACTICES, IT'S BEEN SIX YEARS NOW. ONE OF US HAS BEEN HERE AT THESE COUNCIL MEETINGS
TO OFFER COMMENTS AND LISTEN TO WHAT YOU'RE DOING AND HOPEFULLY INFUSE YOU WITH SOME KNOWLEDGE
ABOUT INTELLECTUAL DISABILITIES, PARTICULARLY WITH DOWN SYNDROME.
I WANTED TO USE THE OPPORTUNITY TODAY TO BOTH CONGRATULATE DR. GITLIN FOR HER NEW APPOINTMENT
AS CHAIR AND ALL OF YOU NEW MEMBERS IN TERMS OF THE TASKS AHEAD OF YOU AND I WAS ENCOURAGED
BY THE DISCOURSE AND DISCUSSION THAT WENT ON THIS MORNING IN TERMS OF WHERE YOU'RE GOING
WITH IT. MY BACKGROUND IS IN REHABILITATION AND PSYCHOLOGY,
AND SOCIAL CARE ASPECT THAT WAS COMING OUT OF THE DISCUSSION WAS VERY, VERY REWARDING.
I ALSO WANT TO COMMEND THE COUNCIL IN CONJUNCTION WITH EVERYTHING ELSE YOU'RE DOING, ON THE
2007 PLAN UPDATE, DEPTH, BREADTH, THOUGHTFUL RECOMMENDATIONS AND WE'RE PLEASED LOOKING
AT IT THAT THERE ARE SIGNIFICANT THINGS THAT ADDRESS INTELLECTUAL DISABILITIES.
IT'S GOOD TO HEAR THIS MORNING SOMEONE MENTION THE NATIONAL PLAN AS OPPOSED TO FEDERAL PLAN,
AND THE FACT THAT YOU'RE LOOKING AT HOW TO ENGAGE THE COMMUNITY OF BROADER DEMENTIA COMMUNITY
IN THE PLAN PROCESS AND REPORTING WHAT'S GOING ON.
IN THAT TONY WANT TO TELL YOU WHAT WE'VE BEEN DOING, NATIONAL TASK GROUP IN EDUCATIONAL
EFFORTS. THERE WAS A LISTING IN THE PLAN OF DIFFERENT
EDUCATIONAL WORK FORCE ENHANCEMENT THINGS THAT WERE BEING DONE BY VARIOUS ORGANIZATIONS,
AND UNFORTUNATELY WE WEREN'T QUITE SET, BUT I WANT TO GIVE YOU INFORMATION ANYWAY.
IF YOU DON'T KNOW, I TALKED ABOUT THIS BEFORE. WE'VE DEVELOPED A NATIONAL CURRICULUM ON DEMENTIA
AND INTELLECTUAL DISABILITIES, NOW BEING USED AS A TRAINING FOR TRAINING WORKSHOPS AROUND
THE COUNTRY. I WANT TO GIVE YOU TERMS WHAT WE'VE DONE.
SINCE 2015 TO PRESENT, WE HAVE PROVIDED OVER 30 TWODAY WORKSHOPS OVER THE COUNTRY, ALL
TOLD 1300 PERSONS WERE TRAINED INCLUDING 790 PROFESSIONALS WHO PROVIDE TRAINING IN AGENCIES
AND WILL USE CURRICULUM TO TRAIN WITHIN THEIR AGENCIES.
ATTENDEES INCLUDED DIRECT SUPPORT WORKERS, CLINICIANS, ADMINISTRATORS, FAMILY CAREGIVERS,
A RANGE OF PROFESSIONALS. THE WORKSHOPS HAVE BEEN HELD IN 17 STATES,
AVERAGE REGISTRATION OF 50 PERSONS. THE POSTEVALUATION WORKSHOP HAVE BEEN ENCOURAGING
BECAUSE WE KNOW OUR PRODUCT IS ACTUALLY HAVING CONVEYING SOME GOOD INFORMATION.
CURRENTLY WE HAVE A DOZEN WORKSHOPS IN THE PIPELINE, THROUGH 2018.
I WANT TO POINT OUT ALSO NTG IS MADE OF VOLUNTEERS ONLY, NO PAID STUFF, NO ONE GETS PAID FOR
WHAT THEY DO. THIS IS BECAUSE PEOPLE CONTRIBUTE EFFORTS.
ALSO WANT TO REPORT WE'RE HAVING SOME DISCUSSIONS WITH HRSA OF INCLUSION OF A MODULE ON INTELLECTUAL
DISABILITIES AS PART OF THE SLATE, GERIATRIC WORKSHOP ENHANCEMENT EFFORTS, NATIONAL TRAINING,
THINGS LIKE THAT SO WE'RE ENCOURAGED IN TERMS OF INFORMATION GOING OUT.
THE LAST TWO COUNCIL MEETINGS REPORTED ON WHAT WE HELD IN OCTOBER OF 2016, INTERNATIONAL
SUMMIT ON INTELLECTUAL DISABILITIES AND DEMENTIA. AND THIS WAS A PARTNERSHIP BETWEEN OUR GROUP
NTG, UNIVERSITY OF CHICAGO AND UNIVERSITY OF STERLING SCOTLAND.
OUT OF THAT HAVE COME A NUMBER OF PAPERS THAT REPORT ON VARIOUS ASPECTS RELATED TO INTELLECTUAL
DISABILITIES, AND DEMENTIA. AND ONE OF THE PAPERS DEALING WITH NOMENCLATURE
HAS JUST APPEARED IN THE JOURNAL CALLED "INTELLECTUAL AND DEVELOPMENTAL DISABILITIES," ANOTHER HAS
APPEARED IN THE JOURNAL OF APPLIED RESEARCH AND INTELLECTUAL DISABILITIES, AND SEVERAL
OTHER PAPERS IN PRESS AT THIS POINT ONE DEALING WITH THE FINDING IN DEMENTIA IN THE JOURNAL
OF PALLIATIVE MEDICINE, ANOTHER IN GERONTOLOGIST AND INTELLECTUAL DISABILITIES INTELLECTUAL
DISABILITIES AND A NUMBER OF OTHERS THAT WE HAVE A LIST TO SHARE WITH YOU.
I DID SEND MY COMMENTS TO YOU AHEAD OF TIME, HOPEFULLY YOU HAVE THEM.
IT'S OUR HOPE THAT THESE PAPERS WILL CONTRIBUTE TO BROADER UNDERSTANDING OF SOME ISSUES BEING
DEALT WITH IN THE FIELD AND ALSO COUNCIL PERHAPS WOULD DRAW UPON THEM WHEN THEY CONSIDER RECOMMENDATIONS,
YOUR TASKS AND ACTIVITIES. THERE'S A LOT OF GOOD INFORMATION IN TERMS
OF WHAT WE RECOMMEND FOR FUTURE ACTIVITIES. THE OTHER THING I WANT TO DO BASICALLY IS
JUST TO COMMEND THE ORGANIZERS OF THE SUMMIT ON CAREGIVING AND DEMENTIA LAST WEEK, A MASSIVE
UNDERTAKING, I REALLY APPRECIATE WHAT'S BEEN DONE.
I CAN APPRECIATE HAVING DONE SIMILAR THINGS, NOT QUITE THAT LARGE.
AND CARRIED THEM OFF. I ALSO WANT TO LAST OFFER SOME KUDOS TO PROFESSOR
TOM HELLER OF THE UNIVERSITY OF CHICAGO WHO DEVELOPED THE POSITION PAPER ON INTELLECTUAL
DISABILITIES, PRESENTED AT THE SUMMIT, AND ALSO COMMEND HER FOR HER INVITED TESTIMONY
AT THE SENATE COMMITTEE ON AGING HELD WEDNESDAY WHERE SHE OFFERED SOME COMMENTS AGAIN IN TERMS
OF RESONATING WITH THE NTG, COUNCIL AND INTELLECTUAL DISABILITIES INTELLECTUAL DISABILITIES.
THANK YOU. >> THANKS, MATT.
IAN? AFTER IAN WE HAVE JADENE.
>> GOOD AFTERNOON, I'M IAN KRAMER FROM THE LEAD COALITION.
I'VE TAKEN A BIT OF BREAK FROM SPEAKING BEFORE THIS GROUP OVER THE LAST FEW SESSIONS, BUT
WANTED TO TAKE THIS OPPORTUNITY TO MAKE JUST A FEW BRIEF REMARKS, MAYBE ROHINI WILL HELP
ME KEEP THEM BRIEF, FROM THE 20ODD TIMES I SPOKE BEFORE TAKING THAT BREAK THEY WEREN'T
ALWAYS BRIEF BUT I'LL DO MY BEST. IN THE WRITTEN COMMENTS THAT I SUBMITTED,
THERE ARE A LONG SERIES OF THANK YOUS, AND I WON'T REITERATE THEM ALL BUT THERE ARE THREE
THAT I GUESS I SHOULD REITERATE AT THIS POINT. ONE IS TO KATIE AND LAURA FOR REMARKABLE WORK
CHAIRING THE SUMMIT. THIS LABOR OF LOVE STARTED FOR THE LEAD COALITION
ABOUT THREE YEARS AGO, AND THIS ADVISORY COUNCIL IS WHAT MADE THE DIFFERENCE.
MAYBE NOT A WELLKEPT SECRET BUT WHEN THE LEAD COALITION SUGGESTED, THE ANSWER FROM THE FEDERAL
WAS NO, SAID IN A PRETTIER WAY BUT NO, THIS COUNCIL SAID THAT ANSWER SHOULD HAVE BEEN
YES AND WE'RE GOING TO MAKE IT QUESTION THAT IT BECAME A YES AND LET TO THE WORK THAT KATIE
AND LAURA CHAIRED BUT THAT WAS THE WORK OF LITERALLY HUNDREDS IF NOT THOUSANDS OF PEOPLE.
AND FOR THAT, THE SECOND THANK YOU GOES TO THIS COUNCIL TO ITS FORMER CHAIR, RON, AND
TO ROHINI, THE GLUE THAT KEEPS THIS COUNCIL TOGETHER AND PRODUCTIVE.
THE THIRD THANK YOU, PROBABLY THE MOST IMPORTANT BY FAR GOES TO THE PEOPLE LIVING WITH DEMENTIA
AND LIVING AS CARE PARTNERS WHOSE VOICES ARE ALWAYS ABLE TO RISE ABOVE THE CLAMOR AND GIVE
US CLARITY AND GIVE US PURPOSE AND GIVE US DIRECTION ABOUT WHAT REALLY MATTERS.
NOT ABOUT THE PROCESS. NOT ABOUT THE SPECTACLE OF A TWODAY EVENT
THAT WAS BEAUTIFUL AND A SPECTACLE AND PRODUCTIVE BUT WAS TWO DAYS.
WHAT MATTERS IS WHAT HAPPENS OVER THE DECADES OF LIVED EXPERIENCE THAT INFORM THE RESEARCH
AND THAT GIVE PURPOSE TO THE RESEARCH WHICH IS HOW DOES RESEARCH CHANGE REAL LIVES.
ONE BY ONE. THAT ACCOUNTS FOR HETEROGENEITY AND ALL THE
OTHER FANCY SCIENCE WORDS WE CARE TO USE, BUT AT THE END OF THE DAY IT'S ABOUT THE LIVED
EXPERIENCE, PERSON BY PERSON, MOMENT BY MOMENT. AND SOME OF THOSE MOMENTS ARE DEEPEST SORROW.
AND SOME OF THOSE MOMENTS ARE GREATEST JOY. A LOT ARE IN BETWEEN.
BUT WE HAVE TO MAKE SURE WHAT COMES OF THIS SUMMIT AND OF THE WORK OF THE NATIONAL PLAN
IS INFORMED NOT BY PRODUCTIVITY BUT BY MEANINGFUL CHANGE IN QUALITY OF LIFE.
SO AS YOU THINK ABOUT CARE AND SERVICES, WHICH ARE FUNCTIONS, I'D LIKE YOU TO ALSO THINK
ABOUT FRAMING THE OUTCOMES IN TERMS OF QUALITY OF LIFE.
SO WE DO THE SCIENCE, AND WE HAVE THE 2025 GOAL, NOT BECAUSE WELL, LET'S PUT IT IN
A DIFFERENT WAY. THE 2025 GOAL IS NOT FRAMED IN TERMS OF HERE'S
ALL THE SCIENCE WE WANT TO DO. IT'S FRAMED IN TERMS OF THE OUTCOMES WE WANT
TO PRODUCE. PREVENTION, EFFECTIVE MEANS OF TREATMENT.
CHANGING LIVES. I WOULD URGE YOU TO DO THE SAME IN TERMS OF
CARE AND SERVICES. WE NEED THE RESEARCH SUMMIT TO INFORM WHAT
WILL REALLY CHANGE QUALITY OF LIFE BUT THE OUTCOMES CAN'T BE NUMBER OF STUDIES FUNDED
OR THE DATA FROM THOSE STUDIES. IT'S GOT TO BE HOW DOES IT CHANGE INDIVIDUAL
LIVES. SO LET ME GIVE YOU A FEW SUGGESTIONS, MANY
OF WHICH YOU'VE HEARD OVER THE 20 OTHER TIMES I'VE SPOKEN BEFORE.
YOU WON'T GIVE YOU THE WHOLE LIST BUT I'LL GIVE YOU A QUICK SET OF EXAMPLES OF THINGS
YOU COULD CHOOSE TO MEASURE THAT TO SOME EXTENT OTHER PARTS OF THE FEDERAL GOVERNMENT, STATE
GOVERNMENT AND PRIVATE SECTOR ACTORS ARE ALREADY MEASURING AND YOU NEED TO ADOPT SOME GOALS
AROUND AT LEAST THESE EXAMPLES, I'M SURE YOU COULD THINK OF 20 MORE.
I'LL GIVE YOU EIGHT QUICKLY. WELL, EIGHT AND A HALF.
THE HALF IS THE ROLE MODEL EXAMPLE. CMS'S WORK TO REDUCE THE INAPPROPRIATE USE
OF ANTIPSYCHOTICS AMONG PEOPLE LIVING WITH DEMENTIA.
A TANGIBLE MEANINGFUL GOAL THAT CHANGES THE LIVES OF REAL INDIVIDUAL HUMAN BEINGS IN WAYS
WE WOULD ALL HOPEFULLY EMBRACE. YOU COULD REPLICATE THAT MODEL AND FIGHT OVER
WHERE THE NUMBERS OUGHT TO BE AND WHAT THE TIMEFRAMES OUGHT TO BE BUT YOU CAN EMBRACE
THE IDEA WE OUGHT TO USE ANTIPSYCHOTICS INAPPROPRIATELY LESS THAN WHAT THE STATUS QUO WOULD HAVE US
DO. SO THINK ABOUT THAT IN THE CONTEXT OF THESE
EIGHT EXAMPLES AND THINK OF YOUR OWN ADDITIONS TO THIS LIST.
DEPRESSION. AMONG CAREGIVERS AND PEOPLE LIVING WITH DEMENTIA.
WE KNOW THERE'S A LOT OF IT. WE CAN DEBATE HOW MUCH AND DUE TO WHAT CAUSES
AND HOW TO AMELIORATE BUT BUT IF THERE WAS LESS THAT WOULD BE BETTER.
IMPOVERISHMENT, WE KNOW THINGS THAT CAN MAKE THAT BETTER, NOT TO ELIMINATE OR FIX FOR ALL
PEOPLE BUT TO ADDRESS IT IN A MEANINGFUL, MEASURABLE WAY.
AND TO DO IT QUICKLY. ISOLATION.
NOT ONLY IN THE CONTEXT OF PEOPLE WHO TECHNICALLY LIVE ALONE BUT EVEN THOSE WHO LIVE WITH A
CARE PARTNER OR CARE PARTNERS BUT WHO ARE NOT FUNCTIONING IN THAT WAY, WHO ARE ISOLATED
IN A GROUP OF PEOPLE. AND THERE IS BY THE WAY A CONNECTION TO DEPRESSION
WITH THAT. FALLS.
AGAIN, I DON'T NEED TO BELABOR THAT POINT. WE KNOW A NUMBER OF AGENCIES PUBLIC AND PRIVATE
WORK ON FALLS. LET'S MEASURE THAT AND UNDERSTAND ITS CONSEQUENCES
WHEN IT HAPPENS, AND ITS CONSEQUENCES WHEN WE CAN AVOID FALSE FOR PEOPLE WITH DEMENTIA
AND CARE PARTNERS. WANDERING.
I WON'T ELABORATE ON THAT. WE'VE ALL LIVED THAT EXPERIENCE, EITHER DIRECTLY
THROUGH OUR OWN FAMILIES OR THOSE OUTSIDE OUR FAMILIES WHO WE CARE ABOUT AND LEARN FROM.
ABUSE, IN ITS MANY FORMS, YOU CAN CALL IT A ABUSE, NEGLECT, EXPLOITATION BUT AT THE
END OF THE DAY IT COMES DOWN TO ABUSE. UNNECESSARY HOSPITALIZATION, AGAIN WE UNDERSTAND
THE NATURE OF THIS DISEASE AND COMORBIDITIES THAT GO WITH IT, THERE'S GOING TO BE SOME
HOSPITALIZATION, THAT SERVES A VALUABLE PURPOSE TO IMPROVE QUALITY OF LIFE.
BUT THE UNNECESSARY HOSPITALIZATIONS AND WHAT DRIVES THAT WE CAN HAVE METRICS, WE CAN HAVE
GOALS, AND MILESTONES ALONG THAT PATH TO REDUCE UNNECESSARY HOSPITALIZATION TARGETED ON THIS
POPULATION. AND THE LAST ONE, I'LL LEAVE YOU WITH THIS
THOUGHT BECAUSE I THINK I HAVE NOT MANAGED TO BE BRIEF, IS ONE THAT I THINK I PROBABLY
SPOKE ABOUT AT ALL 20 OF THOSE PREVIOUS SETS OF COMMENTS.
IT'S ONE THAT KATIE IDENTIFIED AS BEING TOO BIG TO TRY TO TACKLE IN THE TWO DAYS OF THE
SUMMIT BUT THAT NO ONE LOST SIGHT OF. RATES OF DIAGNOSIS ARE NOT JUST NUMBERS.
AND IN THE CONTEXT OF THE REMARKABLE WORK THAT MANY OF YOU DO AND THAT THE CDC THROUGH
ITS HEALTHY AGING ROAD MAP ENDEAVORS TO DO MORE OF MOVING FORWARD, WE NEED TO NOT ONLY
BE SATISFIED WITH DOCTORS KNOWING WHAT THEIR PATIENTS HAVE, BUT MAKING SURE THAT THAT DIAGNOSIS
IS TIMELY, ACCURATE, COMPASSIONATE, AND ACTIONABLE. SO IT HAS TO COME AT THE RIGHT TIME, IT HAS
TO BE SPECIFIC AND ACCURATE, AND THERE'S FAR TOO LITTLE OF BOTH IN THE STATUS QUO.
IT HAS TO BE DELIVERED IN A COMPASSIONATE WAY.
I THINK WE ALL HAVE OUR OWN AND KNOW OTHER PEOPLE'S HORROR STORES ABOUT WELLINTENTIONED
MEDICAL PRACTITIONERS WHO DELIVER THIS DEVASTATING NEWS IN A WAY THAT MAKES IT MORE DEVASTATING,
RATHER THAN, TO DONNA'S POINT, A WAY THAT CAN LEAD TO A HOPEFUL AND MEANINGFUL AND EMPOWERING
FUTURE. AND IT DOESN'T HAVE TO BE THAT WAY.
WE ALL KNOW DOCTORS WHO DO THIS BEAUTIFULLY. AND SO ALL SHOULD BE ABLE TO.
AND THEN LAST OF ALL HAS TO BE ACTIONABLE. THE DIAGNOSIS HAS TO COME WITH DIRECTION TO
RESOURCES THAT WILL SUPPORT INDIVIDUALS AND FAMILIES TO HAVE THE MOST PRODUCTIVE, THE
MOST FULFILLING, MOST AFFIRMING LIFE COURSE AVAILABLE AND THAT INCLUDES AMONG OTHER THINGS
REFERRAL TO CLINICAL TRIALS AND OTHER RESEARCH THAT WILL HELP IMPROVE THE QUALITY OF LIFE
AND IMPROVE THE LIKELIHOOD OF PREVENTION, EFFECTIVE TREATMENT AND CURE FOR ALL WHO WOULD
FOLLOW IN THEIR STEPS. THANK YOU.
>> THANKS, IAN. JADENE AND MATT SHARPE.
>> GOOD AFTERNOON, I WANT TO THANK YOU FOR THE OPPORTUNITY TO SPEAK TO YOU TODAY.
MY NAME IS JADENE RANSTELL, EXCUSE ME. I'M THE MOTHER
OF A 43YEAROLD GENTLEMAN WITH DOWNTOWN, AUTISM AND NOW ALZHEIMER'S.
HE'S THE REASON I'M STANDING BEFORE YOU TODAY, ONE OF MORE THAN 250,000 PEOPLE IN THE UNITED
STATES LIVING WITH DOWN SYNDROME AND MANY LIKE MATT, NOT ALL OF THEM BUT MANY LIKE MATT
WILL SUSCEPTIBLE TO ALZHEIMER'S. WHEN DIAGNOSED I RAN OUT LIKE A CHICKEN WITH
HEAD CUT OFF, DIDN'T KNOW WHERE TO GO, DIDN'T KNOW WHICH OF MATT'S DOCTORS TO SPEAK TO TO
GET ADVICE. I DIDN'T KNOW WHAT QUESTIONS TO ASK BECAUSE
I WASN'T SURE WHAT WAS GOING ON. ULTIMATELY, I WAS LED TO THE NATIONAL TASK
GROUP, AND THEY REALLY SAVED MY LIFE. THEY HAVE EMPOWERED ME.
THEY HAVE EDUCATED ME. THEY HAVE GIVEN ME A PURPOSE IN WHAT WAS A
VERY DEVASTATING BEGINNING. THROUGH THE WORK THAT I'M ABLE TO DO WITH
MY COCHAIR MARY HOGAN, WE HAVE BEEN ABLE TO REACH OUT AND CONNECT WITH OTHER FAMILIES
AROUND THE COUNTRY, AND WE'VE STARTED A BIMONTHLY NEWSLETTER THAT WE SEND TO FAMILIES AND DIRECT
SERVICE PROVIDERS AND AGENCIES WHO ARE DEALING WITH DOWN SYNDROME AND ALZHEIMER'S.
THE STORIES WE HEAR FROM OUR FAMILIES WHEN WE SPEAK EVERY MONTH ARE ALL DIFFERENT.
BUT THEY ARE ALIKE IN VARIOUS WAYS. WHAT WE'VE LEARNED IS THAT ALTHOUGH ALZHEIMER'S
IN THE GENERAL POPULATION CAN BE LIKE ALZHEIMER'S IN DOWN SYNDROME, THERE ARE SOME VERY UNIQUE
DIFFERENCES. AND THAT'S WHY IT'S SO IMPORTANT THAT WE BE
RECOGNIZED AS PART OF THE PLAN. THERE ARE WAY TOO FEW DOCTORS AND SERVICE
PROVIDERS WHO ARE KNOWLEDGEABLE ABOUT THE CONNECTION BETWEEN DOWN SYNDROME AND ALZHEIMER'S.
AND IT MAKES IT VERY DIFFICULT FOR THOSE OF US WHO HAVE FAMILIES WHO LIVE IN AREAS WHERE
THERE AREN'T ADULT DOWN SYNDROME CLINICS OR SPECIALISTS WHO UNDERSTAND THE CONNECTION
OF DOWN'S AND ALZHEIMER'S. THERE'S A CRITICAL NEED FOR INFORMATION TO
READILY AVAILABLE FOR FAMILIES IN ALL ASPECTS OF DOWN SYNDROME.
FAMILIES WANT TO CONNECT WITH OTHER FAMILIES NAVIGATING, WE HEAR IT EVERY MONTH AND THROUGHOUT
THE MONTH WHEN WE'RE NOT SPEAKING TO EACH OTHER.
THERE'S A NEED FOR OPPORTUNITIES, FOR SUPPORT OPPORTUNITIES FOR FAMILIES, WE SOMETIMES ARE
OVERWHELMED NOT ONLY BY THE VOLUME BUT THE INTENSITY OF WHAT SOME OF THESE FAMILIES ARE
GOING THROUGH. MARY AND I SOMETIMES FEEL LIKE WE'RE NOT ADEQUATELY
PREPARED TO HANDLE SOME OF THE NEEDS THESE FAMILIES HAVE.
I'M PLEASED TO ANNOUNCE THAT BECAUSE OF MY OPPORTUNITIES WITH THE NTG THAT NEXT APRIL
IN PARTNERSHIP WITH THE NATIONAL ALLIANCE FOR CAREGIVING AND NATIONAL DOWN SYNDROME
SOCIETY WE'RE GOING TO BE HOLDING THE FIRSTEVER ADULT SUMMIT, ON DOWN SYNDROME, AND WE'RE
GOING TO COVER LOTS OF ASPECTS FROM YOUNG ADULTS THROUGH AGING, SO WE'LL HAVE SOME SPECIFIC
TOPICS ON OLDER ADULTS WITH DOWN SYNDROME AND ALZHEIMER'S.
SO I WANT TO THANK YOU AGAIN AND I WANT TO ADD TWO SPECIAL THANKS.
ONE TO DONNA FOR RECOGNIZING WHEN YOU SPOKE THIS MORNING OF THE NEED FOR A SYSTEM THAT
PROVIDES EQUAL ACCESS TO SERVICES TO PEOPLE WHO ARE AT HIGHER RISK INCLUDING THOSE WITH
DOWN SYNDROME, AND I WANT TO THANK SOWARDE FOR MENTIONING IDEA OF A THEME FOR DOWN SYNDROME
FOR FUTURE MEETINGS. I THINK IT'S CRITICALLY IMPORTANT, THEY ARE
AT SUCH HIGH RISK WE NEED TO REALLY BE PART OF THIS CONVERSATION.
SO WHAT I WOULD ASK FROM YOU IS TO CONTINUE TO ADVOCATE FOR INCLUSION OF PEOPLE WITH DOWN
SYNDROME IN ANY RESEARCH PROJECTS THAT ARE GOING ON, TO ADVOCATE WITH STATE DEVELOPMENTAL
DISABILITIES PROGRAMS AND I GUESS THAT WOULD GO TO CMS, TO RECOGNIZE CHANGES THAT OCCUR
AND ADDITIONAL SUPPORTS NECESSARY WHEN A PERSON HAS INTELLECTUAL DISABILITIES AND ALZHEIMER'S,
SOMETHING I'M PERSONALLY FACING TODAY. TO RECOGNIZE CONTRIBUTIONS OF VOLUNTARY ORGANIZATIONS
LIKES THE NTG, BECAUSE THEY ARE AN INCREDIBLE GROUP AND THEY REALLY ARE HELPING YOU MOVE
THE PROJECT AND THE PLANS FORWARD. AND TO CONTINUE DIALOGUE WITH VOLUNTEERS SO
THAT WE CAN, YOU KNOW, MAKE THE BEST POSSIBLE LIVES FOR ALL PEOPLE WITH ALZHEIMER'S AND
ESPECIALLY THOSE THAT I LOVE. THANK YOU.
>> THANK YOU. MATT SHARPE?
>> HELLO. FIRST, ON BEHALF OF AFTD I WOULD LIKE TO WELCOME
THE NEW COUNCIL MEMBERS. THANK YOU FOR GIVE YOUR TIME, EXPERIENCE AND
PASSION TO HELP ACHIEVE THE GOAL OF ENDING DEMENTIA.
I'M MATT SHARP, ONE OF THE REGULARS AT THESE QUARTERLY MEETINGS.
I ALSO WANTED TO COMMENT ON THE RESEARCH RECOMMENDATIONS FROM THE CARE AND SERVICES SUMMIT, FROM THE
PERSPECTIVE OF THE RELATED DEMENTIA FTD, BUT THE MAIN POINT OF MY COMMENTS WAS GOING TO
BE TO EMPHASIZE THE IMPORTANCE OF HETEROGENEITY, BUT AFTER LISTENING TO THE PRESENTATION AND
DISCUSSIONS THIS MORNING I REALIZE THAT POINT HAS ALREADY BEEN MADE VERY WELL SO I WON'T
REITERATE ANY OF THAT. I WILL JUST ADD ONE THING, AND THAT IS TO
EMPHASIZE THE NEED FOR HETEROGENEITY TO BE KEPT AT THE FOREFRONT THROUGH THE LIFESPAN
OF THE DEVELOPMENT OF CARE AND SERVICES, BECAUSE ONCE CARE AND SERVICES GET THROWN OVER THE
FENCE, SO TO SPEAK, ONCE THEY ARE MADE AVAILABLE TO THE PUBLIC THERE'S GOING TO BE STRONG PRESSURE
FOR SERVICES TO MEET THE DEMAND AND THE DEMAND IS OF COURSE ALZHEIMER'S DISEASE.
SO HAVING HETEROGENEITY BAKED INTO THE RECOMMENDATIONS AS THEY HAVE BEEN IS GREAT.
AND I THINK THAT'S THE MOST IMPORTANT STEP FORWARD TO TAKE TO GET MORE SERVICES OUT THERE
WHICH IS REALLY THE MAIN PRIORITY. BUT I WILL ENCOURAGE PEOPLE TO JUST SOMEHOW
RETURN TO THE IDEA EVEN WHEN THE JOB IS DONE SO TO SPEAK AND RESEARCH HAS BEEN DONE, AND
THEN HOW TO MAKE THOSE SERVICES AVAILABLE TO EVERYBODY AND NOT LET THEM REVERT TO THIS
ONESIZEFITSALL MODEL THAT DOES NOT WORK FOR EVERYBODY WITH DEMENTIA.
ALONG THOSE LINES, I WILL ALSO REITERATE KATIE BRENT'S SUGGESTION OF HAVING A THEMED MEETING
THAT ADDRESSES THE BARRIERS THAT HETEROGENEITY CREATES TO RESEARCH AND ALSO DEVELOPMENT AND
UTILIZATION OF CARE AND SERVICES. AND ON BEHALF OF AFTD WE'LL BE HAPPY TO OFFER
WHATEVER HELP WE CAN. >> THANKS, MATT.
AND THAT'S IT. GREAT, THANK YOU.
THANK YOU EVERYBODY FOR PUBLIC COMMENTS. AND COUNCIL MEMBERS HAVE RECEIVED THOSE COMMENTS
AND THEY CAN BE READ AND CONSIDERED IN ALL OF OUR DELIBERATIONS.
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