NAPA FACA pt 5 Public Comments


>>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.