AND TO LEARN MORE, WE SAT DOWN WITH VICKY HIFFA, THE ACTING EXECUTIVE DIRECTOR OF THE STATE COUNCIL ON DEVELOPMENTAL DISABILITIES, TO TALK ABOUT THE DOCUMENTARY AND THE ONGOING WORK TO SERVE NEW YORKERS WITH DEVELOPMENTAL DISABILITIES.

THANK YOU SO MUCH FOR BEING HERE TODAY, VICKY.

THANK YOU FOR HAVING ME.

OF COURSE.

SO, YOU KNOW, THE GOVERNOR RECENTLY SIGNED LEGISLATION CHANGING THE NAME OF THE DEVELOPMENTAL DISABILITIES PLANNING COUNCIL TO THE STATE COUNCIL ON DEVELOPMENTAL DISABILITIES, AS YOU KNOW.

AND SHE SIGNED LEGISLATION SORT OF CORRECTING THE LANGUAGE USED TO DESCRIBE PEOPLE WITH DEVELOPMENTAL DISABILITIES IN HOUSING, MEDICAL, AND PUBLIC AUTHORITIES LAW.

SO, CAN YOU DESCRIBE THE IMPACT OF THE GOVERNOR SIGNING THIS LEGISLATION AND THE IMPORTANCE?

SURE, SO FOR OUR AGENCY, CHANGING THE NAME WHILE IT SEEMS MINOR, IT REALLY WAS IMPORTANT.

OUR AGENCY, OUR STATE COUNCIL, IS PART OF A NATIONAL NETWORK OF COUNCILS.

PER FEDERAL LAW, THERE'S A STATE COUNCIL IN EVERY STATE AND TERRITORY ACROSS THE COUNTRY.

OUR STATE AND NEW YORK STATE WAS THE ONLY ONE THAT STILL HAD THE OUTDATED NAME OF DEVELOPMENTAL DISABILITIES PLANNING COUNCIL.

SO THIS REALLY, BY CHANGING OUR NAME, ALIGNED US WITH ALL OTHER STATE COUNCILS ACROSS THE COUNTRY.

AND THE IMPORTANCE OF THE LEGISLATION TO OUR AGENCY IS IT GOT RID OF SOME OUTDATED LANGUAGE, WE REPLACED IT WITH MORE PERSON-FIRST LANGUAGE, BUT MORE IMPORTANTLY, IT PUT IN STATUTE THAT OUR COUNCIL MUST REFLECT THE DIVERSITY OF NEW YORK STATE AND ALSO ADDED SOME LANGUAGE AROUND MEMBERSHIP AND MAKING SURE THAT WE GET MORE FRESHER VOICES ON OUR COUNCIL, SO WE HAVE A MORE SET ROTATION POLICY FOR THE MEMBERS OF OUR COUNCIL.

SO IT'LL BE GREAT TO GET MORE VOICES ACROSS THE STATE, REALLY HAVING AN INPUT ON THE POLICIES AND PROGRAMS THAT WE IMPLEMENTED AT OUR AGENCY.

YES, ABSOLUTELY, AND OF COURSE THE COUNCIL WAS INFLUENTIAL WITH THE OFFICE OF GENERAL SERVICES TO PUTTING TOGETHER THE DOCUMENTARY COMMEMORATING THE 50TH ANNIVERSARY OF WILLOWBROOK AND GERALDO RIVERA'S EXPOSÉ, REALLY REVEALING THE EGREGIOUS CONDITIONS AT THE STATE SCHOOL.

SO WHY WAS IT IMPORTANT FOR THE COUNCIL TO PUT TOGETHER THAT DOCUMENTARY?

WHAT WAS THE THOUGHT PROCESS?

SO THE BASIC MISSION OF OUR COUNCIL AND ALL THE COUNCILS ACROSS THE COUNTRY IS TO IMPROVE THE LIVES OF PEOPLE WITH DISABILITIES SO THAT THEY CAN LIVE AS INDEPENDENTLY AS POSSIBLE IN THE COMMUNITY THEY'RE CHOOSING.

AND ONE OF THE WAYS THAT WE FULFILL OUR MISSION IS TO INFORM POLICYMAKERS, STAKEHOLDERS, AND THE GENERAL PUBLIC ABOUT THE BENEFITS OF COMMUNITY INCLUSION FOR PEOPLE WITH DISABILITIES.

SO LAST YEAR, AS YOU SAID, MARKED THE 50TH ANNIVERSARY OF GERALDO RIVERA'S GROUNDBREAKING EXPOSÉ, SO WE THOUGHT WHAT A PERFECT OPPORTUNITY TO INFORM THE PUBLIC ABOUT WILLOWBROOK BECAUSE MANY PEOPLE, PARTICULARLY YOUNGER GENERATIONS, HAVE NEVER HEARD OF WILLOWBROOK AND THAT NEEDS TO CHANGE.

SO WE WANTED TO RAISE AWARENESS ABOUT WHAT HAPPENED AT WILLOWBROOK AND WE ALSO WANTED PEOPLE TO BE AWARE OF HOW FAR WE'VE COME IN THE DISABILITY SYSTEM OVER THE LAST 50 YEARS.

SO WE WANTED TO CELEBRATE THAT, BUT ALSO MAKE CLEAR THAT THERE'S STILL, WE STILL HAVE A WAYS TO GO BEFORE WE REALLY GET FULL INCLUSION IN THE COMMUNITY FOR PEOPLE WITH DISABILITIES.

RIGHT.

ABSOLUTELY.

AND I DID WATCH THE DOCUMENTARY MYSELF.

I MUST SAY I DID ABSOLUTELY ENJOY IT.

SO WHAT WAS THE PREPARATION LIKE IN PUTTING TOGETHER THE DOCUMENTARY?

I KNOW THAT, YOU KNOW, WILLOWBROOK IN ITSELF IS A UNFORTUNATE TRAGEDY THAT HAS SO MANY DIFFERENT LAYERS AND STORIES THAT REALLY, YOU KNOW, IMPACTED ITS CLOSURE.

SO WHAT WAS THAT LIKE PUTTING TOGETHER THE DOCUMENTARY.

WELL, IT WAS AN INTERESTING PROCESS.

WE'RE A SMALL STATE AGENCY.

WE DON'T HAVE A HUGE STAFF.

CERTAINLY NO ONE IN OUR AGENCY HAD AN EXPERIENCE MAKING A DOCUMENTARY.

SO IT WAS VERY NEW TO US.

FORTUNATELY, I HAVE A FEW STAFF THAT WERE REALLY DEDICATED TO THIS PROJECT AND REALLY WORKED HARD.

AND WE WERE ALSO FORTUNATE THAT OUR PARTNERS AT MEDIA SERVICES, WE HAD A PERSON, JILL WALSH, WHO REALLY WAS AS PASSIONATE ABOUT THE PROJECT AS WE WERE.

SO THAT REALLY, REALLY HELPED IN DEVELOPING THE STORY.

BUT YOU KNOW, THERE WERE ALSO THINGS THAT WE HAD TO THINK ABOUT IN TRYING TO DEVELOP IT WAS THIS HAPPENED OVER 50 YEARS AGO.

WHO ARE WE GOING TO INTERVIEW?

WHO COULD WE GET NOW?

50 YEARS LATER.

AND I HAVE TO SAY, PROBABLY THE BIGGEST STEP FOR US WAS GETTING GERALDO RIVERA TO BE INTERVIEWED.

AND I HAVE BERNARD CARABELLO TO THANK FOR THAT.

I CONTACTED BERNARD.

HE, AS YOU KNOW, WAS A RESIDENT AT WILLOWBROOK.

HE LIVED THERE FOR 18 YEARS AND THEN WAS INTERVIEWED BY GERALDO IN HIS EXPOSÉ.

AND THEY ARE STILL FRIENDS TO THIS DAY.

AND THEN WE WERE FORTUNATE TO BE ABLE TO INTERVIEW OTHER KEY PEOPLE IN THE WILLOWBROOK STORY.

THERE WAS AN EVENT HAPPENING AT THE COLLEGE OF STATEN ISLAND, WHICH AS YOU KNOW, WAS WHERE WILLOWBROOK WAS FORMERLY HOUSED.

SO YEAH, IT WAS DEFINITELY A PROCESS AND THERE WERE A FEW KIND OF BARRIERS ALONG THE WAY, BUT WE WERE REALLY HAPPY.

AND I THINK, YOU KNOW, THE LAST THING I WANT TO SAY TOO, IN TERMS OF THINGS THAT WE HAD TO KIND OF ADDRESS, I MEAN, KEEPING, I THINK ONE OF THE BIGGEST CHALLENGES WE HAD IS TO KEEP THIS STORY, THE DOCUMENTARY UNDER 30 MINUTES, 'CAUSE THERE ARE SO MANY LAYERS TO THIS STORY, AS YOU INDICATED, THAT WE WOULD LOVE TO HAVE DELVED INTO, OR STORIES, THERE WERE SO MANY GREAT STORIES AND POWERFUL STORIES THAT WE WEREN'T ABLE TO INCLUDE.

I MEAN, ONE OF THE ASPECTS THAT WE DIDN'T ADDRESS WAS THE FACT THAT RESIDENTS THERE WERE PURPOSELY INFECTED WITH HEPATITIS TO TEST THE VACCINE.

I DON'T THINK MANY PEOPLE ARE AWARE OF THAT, AND WE REALLY WANTED TO INCLUDE THAT, BUT JUST DIDN'T HAVE THE TIME.

ABSOLUTELY, AND AS YOU MENTIONED, THERE'S BEEN SO MANY WAYS IN WHICH PEOPLE WITH DEVELOPMENTAL DISABILITIES ARE BEING TREATED FOR IN A BETTER WAY SINCE WILLOWBROOK, RIGHT, ARE.

I'M CURIOUS FROM YOUR PURVIEW, WHAT WAYS CAN WE CONTINUE TO MAKE ADVANCEMENTS IN THE WAY THAT PEOPLE WITH DEVELOPMENTAL DISABILITIES ARE TREATED EITHER ON THE STATE LEVEL BUT ALSO ON THE FEDERAL LEVEL?

YES.

I MEAN, THERE ARE A LOT OF-- YOU KNOW, WE'VE COME A LONG WAY IN THE 50 YEARS AS YOU SEE IN THE DOCUMENTARY, BUT THERE'S STILL A WAYS TO GO.

PEOPLE WITH DISABILITIES STILL HAVE A MUCH HIGHER UNEMPLOYMENT RATE THAN PEOPLE WITHOUT DISABILITIES.

THEY STILL FACE, YOU KNOW, VARIOUS BARRIERS TO FINDING HOUSING, AFFORDABLE HOUSING IN THE COMMUNITY, ACCESSING TRANSPORTATION, SO THERE ARE MANY THINGS THAT CAN BE DONE AT THE STATE AND FEDERAL LEVEL THAT STILL NEED TO BE DONE.

I MEAN, WE DO HAVE, YOU KNOW, CIVIL RIGHTS AND LAWS THAT PEOPLE WITH DISABILITIES MUST NOT BE DISCRIMINATED AGAINST BUT WHAT'S IN LAW AND WHAT'S IN PRACTICE ARE TWO DIFFERENT THINGS SO WE HAVE TO REALLY STILL WORK AND THAT'S, AS I SAID, SOMETHING THAT THE COUNCIL DOES EVERY DAY TO REALLY, YOU KNOW, FURTHER PROTECT THE RIGHTS OF PEOPLE WITH DISABILITIES AND MAKE SURE THAT WE ARE, YOU KNOW, TRYING TO BREAK DOWN THOSE BARRIERS AND REALLY DRIVE SYSTEMS CHANGE SO THAT PEOPLE CAN LIVE FULL LIVES IN OUR COMMUNITY.

ABSOLUTELY.

THERE'S SO MUCH GOOD WORK THAT'S BEEN DONE SINCE WILLOWBROOK, AND HOW CAN WE PREVENT EVEN MAULER WILLOWBROOKS FROM HAPPENING AND INSTANCES WHERE THERE ARE JUST AS EGREGIOUS CONDITIONS HAPPENING?

HOW CAN WE PREVENT THAT IN YEARS TO COME?

I THINK ONE OF THE THINGS THAT WE NEED TO LOOK OUT FOR ARE, YOU KNOW, PROTECT THE FUNDING THAT'S AVAILABLE FOR DISABILITY SERVICES.

I MEAN, WHEN WILLOWBROOK WAS FIRST OPENED IN THE '40S, IT DIDN'T START OUT AS THIS AWFUL INSTITUTION.

THEY REALLY-- IT WAS REALLY TOUTED AS A STATE-OF-THE-ART FACILITY FOR PEOPLE WITH DISABILITIES THAT YOU WOULD WANT TO SEND YOUR SON AND DAUGHTER FOR THE BEST CARE.

IT JUST OVER TIME, YOU KNOW, BECAME THIS AWFUL PLACE THAT, YOU KNOW, WAS-- YOU KNOW, AT ONE POINT, THE LARGEST INSTITUTION IN THE WORLD FOR PEOPLE WITH DISABILITIES AND IT WAS REALLY BECAUSE OF, YOU KNOW, JUST VARIOUS CUTS TO FUNDING OVER THE YEARS THAT, YOU KNOW, RESULTED IN STAFF RATIOS THAT WHAT 50, 60 PEOPLE TO ONE PERSON WHICH IS NOT MANAGEABLE.

I THINK ONE OF THE WAYS IS TO REALLY ADVOCATE AND PROTECT FUNDING FOR DISABILITY SERVICES TO MAKE SURE THAT, YOU KNOW, WE HAVE ADEQUATE STAFF AND I THINK, YOU KNOW, ONE OF THE THINGS THAT WE'RE FACING NOW IS A CRISIS AMONG DIRECT SUPPORT PROFESSIONAL STAFFING.

IT WAS BAD BEFORE THE PANDEMIC, BUT IT'S SO MUCH WORSE NOW AND I THINK THAT'S SOMETHING THAT REALLY NEEDS TO BE ADDRESSED IS TO MAKE SURE THAT WE HAVE, YOU KNOW, SUFFICIENT STAFFING FOR PEOPLE WITH DISABILITIES, SO WE REALLY NEED TO ADDRESS THE PAY AND REALLY PROVIDE A CAREER LADDER FOR DIRECT SUPPORT PROFESSIONALS SOME IT'S A CAREER THAT THEY WANT TO ENTER INTO AND WE DON'T HAVE SO MANY VACANCIES THAT WE DO NOW IN THE FIELD.

YEAH.

YOU SHED LIGHT ON A VERY IMPORTANT ASPECT WHICH IS THE AFTERMATH OF THE PANDEMIC, RIGHT, AND HOW CAN WE SUPPORT THOSE INDIVIDUALS?

WHAT CAN'T GOVERNOR DO?

WHAT CAN THE LEGISLATURE DO TO ENSURE THAT PEOPLE ARE NOT BEING UNDERSTAFFED OR FACILITIES ARE NOT BEING UNDERSTAFFED?

SURE.

YOU KNOW, I THINK, AGAIN, LOOKING AT PROVIDING ADEQUATE FUNDING, LOOKING AT, YOU KNOW, PROVIDING MORE INNOVATIVE HOUSING SOLUTIONS, NOT EVERYONE WITH DISABILITIES WANTS TO LIVE IN A GROUP HOME.

GROUP HOMES ARE GREAT.

THEY'RE BETTER THAN LIVING IN AN INSTITUTION, BUT SOME PEOPLE WANT TO LIVE, YOU KNOW, IN JUST AN APARTMENT OR A HOUSE.

SO PROVIDING MORE OPPORTUNITIES FOR THAT.

SO MAKING SURE THAT THERE'S ADEQUATE FUNDING AND I WOULD ALSO SAY THAT, AGAIN, LOOKING AT THE DIRECT SUPPORT PROFESSIONAL CRISIS AND REALLY PROVIDING SUFFICIENT FUNDING AND REALLY ADDRESSING THAT IN A LONG-TERM SYSTEMATIC WAY, THAT'S SOMETHING THAT, YOU KNOW, THE GOVERNOR AND THE LEGISLATURE CAN DO, AND IT'S NOT JUST IN THE DISABILITY FIELD.

IT'S REALLY IN ALL HUMAN SERVICE AGENCIES THAT THIS IS A CRISIS WITH DIRECT CARE STAFF.

SO YOU KNOW, I THINK, YOU KNOW, LOOKING AT SOME LONGER TERM SOLUTIONS AND NOT JUST PUTTING A BAND AID ON IT WILL REALLY, I THINK, GO A LONG WAY TO MAKING SURE ANOTHER WILLOWBROOK DOESN'T HAPPEN AGAIN.

ABSOLUTELY.

WELL, YOU PUT IT PERFECTLY.

YOU KNOW, THERE'S BEEN A LOT OF STRIDES THAT'S BEEN MADE SINCE WILLOWBROOK BUT THERE'S SO MUCH WORK TO BE DONE.

THANK YOU SO MUCH FOR BEING WITH US TODAY, VICKY, AND THAT WAS VICKY HIFFA, EXECUTIVE DIRECTOR OF THE STATE COUNCIL ON DEVELOPMENTAL DISABILITIES.

THANK YOU VERY MUCH FOR HAVING ME.