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>> SO AGAIN, AS MARTA SPOKE ABOUT FOR PHYSICAL HEALTH
AND BEHAVIORAL HEALTH COLLABORATION,
THAT'S A BIG PIECE.
THERE ARE MEDICAL ROUNDS THAT ARE HELD
AND INTERDISCIPLINARY TREATMENT TEAMS AND COLLABORATIVE CASE
MANAGEMENT ROUNDS.
IF WE HAVE A MEMBER ON THE PHYSICAL HEALTH SIDE THAT'S
ALSO RECEIVING SERVICES FROM BEHAVIORAL HEALTH,
OR WHO WOULD BENEFIT FROM RECEIVING SERVICES FROM
BEHAVIORAL HEALTH, WE COLLABORATE WITH THAT
BEHAVIORAL HEALTH MCO.
WE WANT TO WORK TOGETHER.
WE WANT TO MAKE SURE THAT THE MEMBER IS RECEIVING ALL
MEDICALLY NECESSARY SERVICES.
DISCHARGE PLANNING, ESPECIALLY IF THERE'S
A MEMBER THAT'S BEEN INPATIENT ON THE PHYSICAL HEALTH SIDE
OR INPATIENT ON THE BEHAVIORAL HEALTH SIDE
AND THERE NEEDS TO BE FOLLOW-UP SERVICES
OR COORDINATION OF SERVICES, WE WANT TO MAKE SURE
THAT WE'RE COMMUNICATING WITH THE PLAN AND ENSURING
A SAFE DISCHARGE.
SORRY, I SKIPPED THAT.
SO THERE ARE MANY, MANY PIECES TO THIS PUZZLE,
AND IDEALLY THE PUZZLE WOULD LOOK LIKE THIS,
WHERE ALL OF THE PIECES AND THE SUPPORT SERVICES
ARE WORKING TOGETHER WITH THE FAMILY,
WITH COMMUNITY RESOURCES, WITH ADVOCATES,
WITH THE MEDICAL HOME, AND WITH THE PHYSICAL HEALTH
AND BEHAVIORAL HEALTH MCOS.
AND I THINK THE BIGGEST MESSAGE TO REALLY GET OUT
OF TODAY IS THAT--AND WE'VE ALL SAID IT--THE SPECIAL NEEDS
UNIT IS THERE AND TO ACCESS IT.
IF YOU'RE CALLING YOUR PHYSICAL HEALTH PLAN
AND GETTING TRANSFERRED AROUND TO MANY DIFFERENT
DEPARTMENTS, ASK FOR THE SPECIAL NEEDS UNIT BECAUSE
WE'RE PRETTY CONFIDENT THAT THEY WILL BE ABLE TO HELP
YOU AND TO RELIEVE SOME OF YOUR FRUSTRATION.
>> I THINK I'M GOOD.
CAN EVERYONE HEAR ME?
MY NAME IS GINA BALAKOFF.
I AM THE SPECIAL NEEDS UNIT MANAGER FOR COVENTRY CARES,
AND I HAVE TWO OF MY EMPLOYEES BEHIND YOU,
PATRICE AND EMILY.
I JUST WANTED TO INTRODUCE THEM.
THEY DO SOME REALLY GREAT WORK.
AND TODAY I'M REALLY HERE TO TALK ABOUT AGING-OUT
OF EARLY AND PERIODIC SCREENING, DIAGNOSTIC
AND TREATMENT.
CAROLYN MACY DID A WONDERFUL JOB TALKING
ABOUT WHAT EPSDT ACTUALLY IS,
AND IT SEEMS LIKE TODAY THIS HAS ACTUALLY BEEN
A VERY HOT TOPIC.
I'VE BEEN TO MANY TRAININGS THIS MORNING ABOUT THE AGING
OUT PROCESS, AND THERE'S MULTIPLE TRANSITION PERIODS
THAT THESE CHILDREN GO THROUGH,
THAT HAVE SPECIAL HEALTHCARE NEEDS.
SO SOMEBODY IN THE PREVIOUS MEETING,
WHERE WE WERE TALKING ABOUT PEDIATRIC CARE SHIFTING TO
ADULT CARE, SOMEONE HAD ASKED WHAT DO YOU THINK WE
SHOULD DO?
WHO SHOULD WE ACCESS?
YOU SHOULD DEFINITELY BE ACCESSING THE SPECIAL NEEDS
UNIT BECAUSE THEY ARE ALL SOCIAL WORKERS AND NURSES
THAT WORK WITH PARENTS EVERY DAY TO GO THROUGH THIS.
SO REALLY, WHAT HAPPENS ON THE MEDICAL ASSISTANCE SIDE,
CHILDREN GET A WONDERFUL BENEFIT, ZERO TO 21.
THEY GET A BETTER BENEFIT THAN PROBABLY ANY COMMERCIAL
PLAN YOU'LL EVER RECEIVE.
IT'S A REALLY GREAT PROGRAM, AND UNFORTUNATELY,
AT 21, THE DEPARTMENT OF PUBLIC WELFARE DOES LIMIT
SOME SERVICES.
AND THOSE SERVICES, LIKE CAROLYN HAD MENTIONED,
ARE SOME SHIFT CARE NURSING, MAYBE DIAPERS,
ENTERAL FEEDS.
THERE'S A LOT OF THINGS THAT CAN BE STOPPED AT 21,
AND THIS IS A VERY SCARY PROCESS FOR PARENTS.
SO WE AT ALL THE HEALTHCARE PLANS DECIDED TO START
PLANNING AT AGE 16.
WE REALLY WANT TO START TO BUILD THIS WONDERFUL
RELATIONSHIPS WITH THESE FAMILIES,
UNDERSTAND WHAT THE CHILD'S MEDICAL NEEDS ARE,
UNDERSTAND WHAT THE FAMILY DYNAMICS ARE,
TO REALLY BUILD THAT RELATIONSHIP SO THAT,
THROUGHOUT THIS PROCESS, IT'S SMOOTH;
WE HAVE LOWER STRESS LEVELS, PARENTS REALLY FEEL BETTER
AND FEEL COMFORTABLE.
WE ALSO WANT PARENTS TO FEEL COMFORTABLE TO OUTREACH
THEIR SPECIAL NEEDS REPRESENTATIVE TO ASK
QUESTIONS AND CONTINUOUSLY FORM THAT RELATIONSHIP.
SOMETIMES, IN THE PHILADELPHIA AREA,
WE ARE ABLE TO DO HOME VISITS.
I KNOW, AT LEAST AT COVENTRY CARES,
WE'VE DONE HOME VISITS TO ELIMINATE SOME FEARS
FOR PARENTS.
SO AGAIN, THAT PLANNING STARTS AT AGE 16.
AND THE REASON WHY IS WE WANT TO START EDUCATING
PARENTS ABOUT WHAT'S HAPPENING NEXT,
WHAT NEXT STEPS ARE.
AND ONE OF THE BIGGEST STEPS IS,
AT AGE 18, THERE ARE SOME DEFINITELY,
OBVIOUSLY, CHANGES.
ONE OF THE CHANGES IS THAT, EACH OF THE HEALTHCARE
PLANS, YOU DO HAVE A CO-PAY CHANGE.
SO FROM ZERO TO 18, THERE IS NO CO-PAY.
FROM 18 TO 21, THERE ARE A FEW CHANGES,
AND THEY ARE DIFFERENT FOR EACH OF THE PLANS.
THE OTHER THING THAT WE REALLY WANT TO THINK ABOUT,
AND I THINK PARENTS DON'T ALWAYS THINK ABOUT,
IS THERE ARE HIPAA IMPLICATIONS AT AGE 18.
PARENTS DO HAVE TO MAYBE SIGN RELEASES.
I KNOW WHEN WE REACH OUT TO A CHILD THAT'S 18 TO 21,
WE EITHER TRY AND GET VERBAL AGREEMENT OR WE GET SIGNED
RELEASES, IF THAT'S POSSIBLE.
BUT AT AGE 18, PARENTS ALSO--NOT JUST FOR MEDICAL
ASSISTANCE AND FOR THE MEDICAL,
THEY PROBABLY NEED TO THINK OF DO THEY NEED A POWER
OF ATTORNEY?
DO THEY NEED GUARDIANSHIP FOR THEIR CHILD?
AND MAYBE THEIR CHILD IS UNABLE TO MAKE THOSE MEDICAL
DECISIONS, AND THAT'S SOMETHING THAT
THE SPECIAL NEEDS REPS WILL REALLY, GENERALLY TALK
TO PARENTS ABOUT.
AND A LOT OF TIMES, PARENTS DON'T REALLY THINK ABOUT THAT.
I'VE RECENTLY BEEN REACHING OUT TO A LOT OF PARENTS THAT
HAVEN'T HAD THAT IN PLACE.
WITH HEALTH CHOICES EXPANSION,
COVENTRY CARES HAS THE NEW EAST REGION.
AND WHAT WE'VE BEEN SEEING IS THAT,
UNFORTUNATELY, THERE SOMETIMES ARE DENIALS
IN THINGS, AND THESE CHILDREN ARE USUALLY 18 TO 21.
WELL, AT MY HEALTH PLAN, A PERSON CAN'T APPEAL ANYTHING
FROM 18 TO 21.
THEIR PARENT CAN'T APPEAL UNLESS THERE'S SOME TYPE
OF POWER OF ATTORNEY OR GUARDIANSHIP.
SO THESE PARENTS ARE NOW STUCK,
RUSHING AROUND, TRYING TO GET GUARDIANSHIP OR POWER
OF ATTORNEY FOR THEIR CHILD SO THAT THEY CAN FILE THIS
APPEAL SO THE PERSON CAN CONTINUE TO GET SERVICES.
SO THAT'S JUST AN INTERESTING FACET
FOR COVENTRY CARES IN THE APPEAL PROCESS THAT
I THOUGHT IS SOMETHING WE REALLY NEED TO START
EDUCATING FAMILIES ABOUT.
THE OTHER BIG CHANGE, OBVIOUSLY,
WHAT WE WANT TO START THINKING ABOUT,
IS TRANSITIONING MEMBERS TO ADULT PROVIDERS.
THAT IS NOT AN EASY TASK.
FIRST OF ALL, THE CHILD PROBABLY DOES NOT--
OR THE YOUTH-- DOES NOT WANT TO TRANSITION
TO AN ADULT PROVIDER.
THEY FEEL COMFORTABLE WITH THEIR PEDIATRICIAN.
THEY FEEL COMFORTABLE WITH THEIR SPECIALISTS.
PARENTS DON'T WANT TO DO IT.
SO THE SPECIAL NEEDS UNITS ARE REALLY THERE TO GUIDE
YOU THROUGH THAT PROCESS, FIND SPECIALISTS THAT ARE
WILLING TO WORK WITH YOUR CHILD.
THEY CAN CALL PROVIDERS.
THEY CAN MAKE APPOINTMENTS FOR YOU.
THEY CAN DO THREE-WAY CALLS SO THAT YOU'RE COMFORTABLE
WITH THE PROVIDER.
IN THE PREVIOUS MEETING I WAS AT,
WE WERE TALKING ABOUT THE OPS MEMO,
AND THAT IS SOMETHING THAT THE DEPARTMENT OF PUBLIC
WELFARE THOUGHT WAS VERY IMPORTANT TO HAVE.
IN THIS OPS MEMO, IT BASICALLY ALLOWS SOMEONE
THAT'S AGING-OUT OF EPSDT SERVICES TO CONTINUOUSLY
HAVE THEIR PEDIATRICIAN, BUT THEY'RE ALSO ABLE
TO KIND OF, WHAT I CALL, INTERVIEW ADULT PCPS.
THEY CAN GO INTO THE OFFICE.
THEY CAN LOOK AT THE OFFICE, TALK TO OFFICE STAFF.
THEY CAN REALLY FIGURE OUT IS THAT *** SOMEONE THAT'S
GOING TO WORK FOR THEM?
AND WE CAN GUIDE THEM.
WE CAN HELP THEM MAKE THAT APPOINTMENT.
AND THEN THEY GET TO INTERVIEW,
THEY GET TO GO AND TALK TO THEM,
DISCUSS WHAT IS MOST APPROPRIATE FOR THEM,
AND THEN THEY CAN MAKE THAT INFORMED CHOICE.
SO THIS IS ANOTHER BIG TOPIC.
MANY OF OUR CHILDREN HAVE SHIFT CARE,
AND WHAT SHIFT CARE IS IS A PRIVATE DUTY NURSE
THAT IS ABLE TO GO INTO THE HOME,
MAYBE UP TO 24 HOURS A DAY.
MAYBE IT'S ONLY FOUR HOURS A DAY.
BUT UNFORTUNATELY, AT THEIR 21ST BIRTHDAY,
THAT COMPLETELY STOPS.
THAT NO LONGER IS CONSIDERED A MEDICAL ASSISTANCE
BENEFIT.
IT FALLS UNDER, OBVIOUSLY, THE EPSDT EXPANDED SERVICES.
SO AT AGE 18, US AT THE SPECIAL NEEDS UNITS START
TO WORK WITH FAMILIES TO EDUCATE THEM WHAT
ARE THE NEXT STEPS, HOW TO GET RESOURCES.
SO A LOT OF TIMES, WHAT WE'RE DOING IS WORKING
WITH FAMILIES, TALKING TO THEM ABOUT THIS.
WE'RE ALSO WORKING WITH THE DEPARTMENT OF PUBLIC WELFARE.
THE DEPARTMENT ALSO HAS WHAT THEY CALL A SPECIAL NEEDS UNIT,
AND THERE'S ONE PERSON THAT I THINK ALL OF US WORK WITH--
HIS NAME IS ERIC ULSH-- AND HE REALLY HELPS US
MAKE SURE FAMILIES ARE GETTING EXACTLY WHAT THEY NEED.
SO ONE THING THAT HE REQUIRES US TO DO IS COMPLETE
AN RFT FORM, OR A RESOURCE FACILITATION TEAM FORM.
AND BASICALLY, THAT'S CLINICAL,
THAT'S MEDICAL, THAT'S SOCIAL--IT'S ALL THIS
INFORMATION THAT WE PROVIDE TO THE DEPARTMENT OF PUBLIC
WELFARE AND THEN THEY PROVIDE TO THE CERTAIN
WAIVER PROGRAMS WHERE THEY SEE FIT.
SO THAT'S ONE THING WE REALLY DO,
AND THEN WE ALSO FORM THIS TEAM THAT WE TALK ABOUT
THESE MEMBERS.
WHERE DO THEY THINK WE SHOULD BE?
AND THAT'S WITH THE DEPARTMENT OF PUBLIC WELFARE
AND THE SPECIAL NEEDS UNIT AND THE FAMILIES.
SO WE REALLY WANT TO MAKE SURE THAT,
AT AGE 21, THERE AREN'T SERVICE LAPSES,
THEY'RE GETTING WHAT THEY REALLY, REALLY NEED.
ANOTHER THING THAT WE CAN DO IS,
WHILE WE'RE EDUCATING PARENTS ABOUT AGING-OUT ON
THEIR 21ST BIRTHDAY, GENERALLY THEY MOVE
INTO WHAT WE CALL A WAIVER.
AND I KNOW WE'VE TALKED A LOT ABOUT WAIVERS,
AND OBVIOUSLY A WAIVER IS SOMETHING THAT KEEPS--
IT'S MONIES THE STATE PROVIDES TO KEEP PEOPLE IN THEIR HOMES,
IN THEIR COMMUNITIES, INSTEAD OF INSTITUTIONALIZATION.
SO WHAT WE REALLY WANT TO DO IS TRY TO GET THEM ON THAT
WAIVER PROGRAM, SO WE EDUCATE PARENTS ABOUT HOW
TO GET THEM ON THE WAIVER.
WE CAN MAKE THREE-WAY CALLS TO THE REFERRAL SOURCE.
A LOT OF TIMES THAT'S MAXIMUS,
AND WE CAN DO THREE-WAY CALLS.
AND THEN WE FOLLOW THAT MEMBER THE WHOLE TIME
UNTIL WE TRY TO GET THEM ON THE WAIVER.
ONCE THEY BECOME ON A WAIVER OR BECOME ELIGIBLE,
THEY DO GET A SERVICE COORDINATOR.
SO THE HEALTH PLAN, THE SERVICE COORDINATOR,
AND THE DEPARTMENT OF PUBLIC WELFARE REALLY DOES MAKE
SURE THAT TRANSITION IS AS SMOOTH AS POSSIBLE.
I WAS ACTUALLY AT A MEETING THIS WEEK WITH ERIC,
AND HE WAS TALKING A LITTLE BIT ABOUT THIS.
AND HE HAD INFORMED US THAT THERE WERE 97 KIDS
THAT NEEDED TO BE TRANSITIONED FROM THE EPSDT EXPANDED
SERVICES TO A WAIVER.
AND I THINK 95 OF THEM IN 2012 DID GET TRANSITIONED
TO A WAIVER, SO THEY DID FIND SLOTS FOR ALL THOSE PEOPLE
EXACTLY ON THEIR 21ST BIRTHDAY.
AND THEN THERE MIGHT HAVE BEEN A SLIGHT LAPSE
IN SERVICE, BUT THEN THE OTHER TWO GOT ON WAIVERS.
SO I THINK WE DO A VERY GOOD JOB OF MAKING SURE THESE
KIDS AREN'T LOST.
SO THERE IS SOME-- A LOT OF TRANSITION,
NOT ONLY FROM MEDICAL ASSISTANCE AND CHANGING
THOSE BENEFITS.
OBVIOUSLY, KIDS ARE ALSO GRADUATING HIGH SCHOOL,
COMPLETING HIGH SCHOOL AT EITHER AGE 18 OR AGE 21.
SO THERE IS A LOT THE PARENTS AND CHILDREN
ARE GOING THROUGH DURING THIS TIME.
SO IT REALLY IS IMPORTANT TO CONTACT YOUR SPECIAL NEEDS
UNIT TO MAKE SURE EVERYBODY IS ON THE SAME PAGE.
SO AGAIN, LIKE A LOT OF PEOPLE HAVE SPOKEN A LOT
TODAY ABOUT, THERE IS THIS HUGE FEAR OF,
YOU KNOW, YOU'RE GOING TO BE LEFT OUT.
THE ADULT IS NOT GOING TO GET THE SERVICES THEY HAD.
AND THEY MAY NOT RECEIVE THE SAME SERVICES,
AND THEY MAY KIND OF HAVE TO PICK FROM DIFFERENT
COMMUNITY RESOURCES, WAIVERS,
TO GET THE SAME RESOURCES AS THEY DID AS A CHILD.
IT'S COMPLETELY DIFFERENT AS AN ADULT.
THERE IS A PERCEIVED LACK OF RESOURCES,
AND THE REASON, I THINK, FOR THAT IS BECAUSE A LOT
OF TIMES, PARENTS SEE THE MEDICAL ASSISTANCE
AS A SCHOOL AND THOSE ARE THE TWO PIECES THEY
GET THEIR INFORMATION FROM AND THE SERVICES FROM.
NOW THERE'S MAYBE MANY DIFFERENT ORGANIZATION,
RESOURCES THAT THIS ADULT IS NOW GOING TO BE RECEIVING
SERVICES FROM.
JUST LIKE WHEN WE'RE MOVING FROM PEDIATRIC TO AN ADULT
PROVIDER, IT CAN BE VERY SCARY.
IT'S DEFINITELY A DIFFERENT ATMOSPHERE.
THERE'S DIFFERENT OFFICE MANAGERS,
AND DEFINITELY IT'S A DIFFERENT SITUATION ALTOGETHER.
SO THAT CAN BE VERY SCARY FOR THE CHILD,
FOR THE PARENTS.
IT'S NOT THE BEST, AND THAT'S WHAT WE'RE HERE FOR,
IS TO REALLY EASE THOSE TRANSITIONS AND MAKE IT AS
SMOOTH AS POSSIBLE.
AND THEN, AGAIN, I DID TALK A LITTLE BIT ABOUT THE OPS
MEMO, THE OPPORTUNITY TO BE ABLE TO GO TO MANY
PROVIDERS, GO TO THREE PROVIDERS TO MAKE SURE IT'S
A GOOD FIT FOR YOU.
SO REALLY, IT'S JUST--REALLY,
WHAT I HAVE TO SAY ABOUT CALLING THE SPECIAL NEEDS
UNITS, I WOULD RATHER YOU GUYS BE PROACTIVE THAN US
HAVING TO BE REACTIVE.
I THINK A LOT OF TIMES WE GET THE CASES WHERE THEY'RE
AT THEIR END, PARENTS ARE ANGRY,
MEMBERS ARE ANGRY.
WHERE IF THEY WOULD BE MORE PROACTIVE,
CALLING INTO THE SPECIAL NEEDS UNIT AND GETTING IT
FIXED BEFORE IT'S TO THE END,
WHERE PEOPLE ARE ANGRY AND SERVICES ARE BEING DENIED.
DOES ANYONE HAVE QUESTIONS?
>> SO THE OPS MEMO, WHAT I HAD UNDERSTOOD IS THAT THEY
NEED TO GO THROUGH THE SPECIAL NEEDS UNIT TO BE
ABLE TO GET PERMISSION FROM YOU TO VISIT THE FIRST
PERSON, AND IF IT DOESN'T WORK,
THEY COME BACK TO YOU TO GET THE SECOND PERSON.
AND YOU WILL HELP THEM FIND THOSE PEOPLE.
>> OH YES, YES.
AND THAT'S WHY WE WANT TO BUILD THAT RELATIONSHIP
EARLY ON, TO EXPLAIN THAT, BECAUSE AT 16 WE WANT TO SAY,
"LOOK, WE WANT YOU TO START THINKING ABOUT THIS."
>> SO DO I REFER ALL OF MY PATIENTS THAT I SEE THAT ARE
16 TO MAKE SURE THAT THEY'RE CONNECTING NOW WITH
THE SPECIAL NEEDS UNIT?
>> YEAH, I'D RATHER BE PROACTIVE THAN REACTIVE,
AND WE SHOULD BE FORMING RELATIONSHIPS.
>> WHAT ABOUT COMMITTED CHILDREN?
>> FOR COMMITTED CHILDREN?
>> (INAUDIBLE QUESTION FROM AUDIENCE.)
>> THAT IS A GOOD QUESTION.
DO YOU KNOW, CAROLYN?
BY COMMITTED, DO YOU MEAN LIKE--
>> DHS.
>> OH, YEAH, WE WORK CLOSELY.
WE CALL THEM THE MCO LIAISON IN EACH COUNTY,
SO WE CAN CERTAINLY-- WE USUALLY WORK WITH THEM,
ALL THE TIME.
>> (INAUDIBLE QUESTION FROM AUDIENCE.)
>> OH YES, THE SPECIAL NEEDS UNIT, IT'S WONDERFUL.
I CAN'T SAY ENOUGH THINGS ABOUT THE SPECIAL NEEDS UNIT.
WE HELP ANYONE THAT'S ON THE PLAN,
AND SOMETIMES WE EVEN HELP PEOPLE THAT NOT NECESSARILY
ARE NOT ON THE PLAN, BUT MAYBE HAVE LOST BENEFITS
AND ALL OF THE SUDDEN THEY DON'T KNOW WHERE TO GO WITH THAT.
THEY MAY HAVE BEEN ON MEDICAL ASSISTANCE AND THEY
NEED TO COMPLETE THE RE-ELIGIBILITY FORM.
WE DO A LOT OF THAT.
AND I CAN'T SAY ENOUGH OF HOW MUCH WE ALL WORK
SO WELL TOGETHER.
>> I'M LEAH.
I'M FROM HEALTH PARTNERS.
AND I THINK THERE'S PROBABLY TWO SLIDES THAT ARE THE MOST
IMPORTANT IN ALL OF THIS.
ONE OF THEM IS THIS ONE, BUT THE OTHER ONE IS ALL OF OUR
NAMES AND PHONE NUMBERS BECAUSE WE REALLY PUT THEM
IN THERE FOR YOU TO USE.
AND THIS PIECE, I THINK, REALLY GOES BACK TO SYMME'S
ORIGINAL QUESTION, WHICH IS,
"HOW DO YOU MAKE SURE THAT SOMEONE WITH A DISABILITY,
WHO WINDS UP IN AN ER WITH A BUNCH OF DIFFERENT
ISSUES GOING ON, REALLY GETS FULLY ADDRESSED
AND THINGS DON'T FALL THROUGH THE CRACKS?"
AND I THINK THE KEY TO THAT IS MAKING SURE THAT ALL
OF THESE THINGS GET TAKEN INTO CONSIDERATION.
AND MY PURPOSE TODAY, MY PART OF THIS,
IS TO JUST PRESENT YOU WITH SOME CASE STUDIES THAT WILL
GIVE YOU A LITTLE BIT MORE UNDERSTANDING AND MAYBE LOOK
AT THE MEAT AND POTATOES OF WHAT WE DO ON
A DAY-TO-DAY BASIS.
AND SO THE ONE CASE STUDY THAT I WANT TO TALK ABOUT
FIRST IS A FELLOW NAMED DEWON.
AND DEWON WAS IN HIS THIRTIES AND RESIDED
IN A GROUP HOME FOR MANY, MANY YEARS,
WAS AT HOME UNTIL PROBABLY HE WAS IN HIS LATE TEENS,
WHEN HIS BEHAVIOR STARTED TO GET REALLY,
REALLY DIFFICULT FOR HIS FAMILY TO MANAGE.
HIS PARENTS WERE OLDER, THEY WERE JUST REALLY STRUGGLING,
AND THEY MADE A DECISION THAT IT WAS IN HIS BEST
INTEREST TO TRY A GROUP HOME.
AND IT WAS VERY SUCCESSFUL.
HE HAD A LITTLE BIT OF A ROCKY TRANSITION BUT,
FROM WHAT WE LEARNED, HE WAS VERY HAPPY WHERE HE WAS.
HE WOULD ACT UP EVERY ONCE IN A WHILE,
BUT THEY FINALLY GOT THE RIGHT COMBINATION OF NOT
ONLY MEDICATION BUT BEHAVIOR MOD AND STAFF WHO KNEW HOW
TO DEAL WITH HIM AND HOW TO SEE WHAT SOME
OF THE TRIGGERS WERE AND PREVENT SOME OF THE EXPLOSIVES.
WE GOT THE CASE--SPECIAL NEEDS AT HEALTH PARTNERS GOT IT--
FROM PCHC, PHILADELPHIA COORDINATED HEALTHCARE.
THEY CALLED US ONE DAY AND SAID,
"WE COULD REALLY USE YOUR HELP WITH THIS.
WE'VE GOT THIS FELLOW," AND THEY GAVE US THE BACKGROUND
THAT I JUST GAVE YOU, WHO, ALL OF THE SUDDEN,
HIS BEHAVIOR JUST WENT OFF THE CHARTS--BANGING HIS HEAD
INTO A WALL, PICKING UP DESKS AND CHUCKING THEM
ACROSS THE ROOM, LITERALLY RIPPING DOORS OFF OF THEIR
HINGES, GOING AFTER STAFF.
AND IN THE LAST SIX MONTHS, HE HAD HAD FIVE OR SIX
INPATIENT PSYCHIATRIC ADMISSIONS.
THEY HAD SWITCHED HIS MEDICATIONS AROUND EVERY
WHICH WAY BUT YOU KNOW WHAT, AND NOTHING WAS MAKING
A DIFFERENCE.
HE WAS GETTING WORSE.
SO WE WENT IN, AND WE WORKED WITH CBH,
AND WE LOOKED--AND WE WORKED WITH THE GROUP HOME STAFF
AND REALLY TRIED TO LOOK AT JUST WHAT WAS GOING ON.
AND ONE OF THE THINGS THAT WE DISCOVERED WAS THAT OVER
THE LAST SIX MONTHS, AS HIS BEHAVIOR GOT WORSE AND WORSE
AND WORSE, NOBODY EVER DID A PHYSICAL.
NOBODY EVER DID A DENTAL EXAM.
THEY MADE THE ASSUMPTION-- AND AARON IS SITTING BACK
THERE AND SMILING BECAUSE HE KNOWS
EXACTLY WHAT I'M TALKING ABOUT--NOBODY EVER LOOKED
AT THE WHOLE PICTURE.
AND I MUST ADMIT I STOLE THIS SLIDE FROM AARON,
SO IT'S HIS BABY
>> (INAUDIBLE QUESTION FROM AUDIENCE.)
>> YES, I DID.
I HEARD HIM PRESENT A FEW WEEKS AGO,
AND I WENT UP TO HIM AT THE END OF IT AND SAID,
"I HAVE GOT TO HAVE THAT SLIDE.
IT'S MARVELOUS.
MAY I PLEASE STEAL IT?"
SO WHAT WE DID FOR THIS FELLOW WAS WE GOT--
HE WAS CURRENTLY--IT GOT SO BAD THAT NO EVERYDAY
RUN-OF-THE-MILL PSYCHIATRIC FACILITY WOULD TAKE HIM IN.
AND HE WOUND UP AT NORRISTOWN STATE HOSPITAL.
SO WE GOT THEM TO AGREE TO DO A FULL WORKUP,
A FULL MEDICAL WORKUP, BLOOD WORK,
THE WHOLE SHEBANG, X-RAYS, EVERYTHING UNDER THE SUN.
WE GOT THAT GOING, WE GOT A DENTAL EXAM,
AND GUESS WHAT WE FOUND?
HE HAD AN ABSCESS IN HIS TOOTH,
A SIMPLE ABSCESS IN HIS TOOTH.
THIS GUY WAS NON-COMMUNICATIVE.
HE COULDN'T SAY TO ANYBODY, "EXCUSE ME,
MY TOOTH HURTS.
I HAVE A TOOTHACHE."
ALL HE COULD DO WAS ACT OUT, AND IT'S WHY HE KEPT RAMMING
HIS HEAD INTO THE WALL, BECAUSE IT WAS HIS WAY
OF TRYING TO TELL SOMEBODY.
SO THIS POOR SOUL WENT THROUGH SIX MONTHS IN
AND OUT OF PSYCHIATRIC FACILITIES BEFORE ANYBODY
BOTHERED TO FIGURE OUT THAT WHAT NEEDED TO BE DONE WAS
PROBABLY, IF WE HAD CAUGHT IT EARLY ENOUGH,
IT PROBABLY COULD HAVE BEEN A SIMPLE ROOT CANAL.
BUT HE WOUND UP WITH AN EXTRACTION.
AND SINCE THAT DAY, WE HAVEN'T HEARD ONE PEEP
ABOUT HIM.
HE'S BACK IN HIS GROUP HOME.
HE'S FINE.
HE'S DOING WELL.
HE'S SO--I CAN'T STRESS ENOUGH THE IMPORTANCE
OF LOOKING AT EVERY SINGLE PIECE WHEN THERE'S
A SIGNIFICANT CHANGE IN SOMEBODY'S BEHAVIOR LIKE
THAT SO THAT, AS SYMME SAID, THEY DON'T FALL THROUGH THE
CRACKS, THEY DON'T WIND UP WITH THE WRONG KIND OF CARE
OR CARE THAT'S BEING TAKEN SO FAR OFF THE CHARTS THAT
IT'S MEANINGLESS.
ANOTHER CASE THAT WE HAD WAS JOHN,
WHO WAS A 10-YEAR-OLD.
AND JOHN HAS A HISTORY OF ASTHMA,
AND HE WAS DIAGNOSED WITH AUTISM.
AND HIS AUTISM WAS PRETTY SEVERE,
AND HE WAS--AS HE GOT OLDER, HE WAS BECOMING MORE
AND MORE VIOLENT WITH HIS FAMILY.
HE LIVED AT HOME WITH A SINGLE PARENT AND A SIBLING,
A VERY YOUNG SIBLING, AND MOM WAS GETTING INCREASINGLY
FEARFUL OF THIS KID BECAUSE HE WAS GROWING,
HE WAS GETTING STRONGER, HE WAS GETTING TALLER.
AT 10, HE WAS ALMOST AS TALL AS SHE WAS,
AND SHE WAS SCARED.
SHE WAS SCARED TO DEATH.
HIS ASTHMA REALLY STARTED KICKING UP,
AND HE WOUND UP BEING HOSPITALIZED,
TAKEN OUT OF HIS REGULAR ENVIRONMENT,
PUT IN THE HOSPITAL.
JUST STARTED ACTING UP SOMETHING FIERCE WHILE HE
WAS IN THE HOSPITAL, ATTACKED HIS ROOMMATE
BECAUSE NO ONE REALLY UNDERSTOOD HIS TRIGGERS.
NO ONE REALLY UNDERSTOOD WHAT WOULD SET THINGS OFF
FOR HIM OR HOW TO INTERVENE EARLY.
SO HE WOUND UP GETTING PHYSICALLY VIOLENT WITH HIS
ROOMMATE, AND HE WAS 302'D INTO PSYCHIATRIC CARE.
WHEN HE WENT INTO PSYCH PLACEMENT,
MOM'S FIRST REACTION WAS,
"THANK YOU, JESUS, AND YOU CAN'T SEND HIM HOME.
I DON'T WANT THIS KID.
I CAN'T DEAL WITH HIM.
I'M FREAKED OUT.
I JUST CAN'T DO IT."
SO THEY WERE ABLE TO WORK WITH HER AND GOT HER TO
AGREE TO TAKE HIM BACK HOME.
IN THE MEANTIME, SPECIAL NEEDS GOT INVOLVED AT HEALTH
PARTNERS, AND SPECIAL NEEDS AT CBH GOT INVOLVED,
AND WE TRIED TO HELP THE DISCHARGE PLANNERS PUT
TOGETHER A DISCHARGE PLAN THAT WAS GOING TO BE VIABLE
FOR THIS KID.
WE TRIED TO PUT SOME SUPPORTS IN FOR MOM.
WE TRIED TO PUT SOME SUPPORTS IN FOR INCREASED
WRAP-AROUND, BEHAVIORAL SPECIALIST CONSULTANTS.
WE TRIED TO PUT IN EXTRA SERVICES.
BUT WHEN HE GOT HOME, THINGS JUST REALLY STARTED TO FALL
APART, AND HE WOUND UP GOING BACK INTO THE PSYCHIATRIC
HOSPITAL.
NO MATTER WHAT WE SEEMED TO DO,
WE WEREN'T DOING ENOUGH.
WE JUST WEREN'T DOING ENOUGH.
SO WHEN HE WENT BACK IN, THEY READJUSTED
HIS MEDICATIONS.
THEY GOT HIM ON A COCKTAIL THAT THEY FELT WAS GOING
TO WORK PRETTY WELL, AND MOM WAS BACK TO,
"I CAN'T DO THIS.
I CAN'T DO IT.
I DON'T KNOW WHAT TO DO.
I'M AT MY WITS END."
SO MOM CONTACTED, ON HER OWN,
CONTACTED DHS AND SAID, "I DON'T KNOW WHAT TO DO.
I'M AT A LOSS," TOLD THEM THE WHOLE HISTORY.
DHS WENT OUT AND DID AN ASSESSMENT.
WE BEGAN HAVING INTERDISCIPLINARY MEETINGS
WITH HEALTH PARTNERS AND CBH AND THE PSYCHIATRIC
FACILITY, MOM, DHS, ALL TRYING TO TALK ABOUT HOW DO
WE MAKE IT A SUCCESS FOR THIS KID SO THAT HE DOESN'T
KEEP GOING HOME, FAILING AND COMING BACK?
WHAT CAN WE DO DIFFERENTLY?
SO WHAT WORKED FOR THIS PARTICULAR CHILD WAS TO BE
PLACED--AND WE HAD TALKED ABOUT A MULTITUDE OF THINGS,
INCLUDING PUTTING HIM IN A CRR,
PUTTING HIM IN A HOST HOME.
HE WOUND UP GETTING PLACED IN A THERAPEUTIC FOSTER CARE
SETTING WITH ALL SORTS OF SERVICES IN PLACE,
AND HE'S STILL THERE AND DOING VERY WELL.
AND IN THE MEANTIME, THERE'S A SET OF SERVICES AT HOME
FOR MOM TO HELP HER.
SHE'S WORKING WITH THE THERAPEUTIC FOSTER CARE FOLKS.
SHE'S GOING TO PARENTING CLASSES.
AND THE LONG-TERM GOAL, ACTUALLY, A SHORT-TERM
GOAL, IS TO GET THIS CHILD REUNIFIED WITH HIS MOTHER.
BUT THAT'S KIND OF WHERE WE'RE WORKING RIGHT NOW
AND TRYING TO KEEP TRACK OF JUST WHERE HE'S AT AND WHAT
SERVICES WE CAN HELP TO PROVIDE AND HOW WE CAN
CONTINUE TO SUPPORT.
WE'LL KEEP FOLLOWING HIM UNTIL,
AND PROBABLY WELL AFTER, HE GOES HOME SO THAT WE CAN
MAKE SURE THAT NOT ONLY HE GETS THE SUPPORT THAT HE
NEEDS BUT THAT HIS MOM GETS THE SUPPORT THAT SHE NEEDS
AND SO THAT, IF THERE ARE ISSUES STARTING TO BUBBLE
UP, THAT WE CAN TRY TO GET IN THERE AND PREVENT THINGS
FROM GOING SOUTH AGAIN.
AND I GUESS THE LAST-- I DON'T HAVE MUCH TIME LEFT.
I GUESS THE LAST CASE STUDY THAT I WANTED TO TALK ABOUT
WAS A LITTLE ONE NAMED JULIE.
AND JULIE WAS--GOSH.
SHE HAD EVERY DIAGNOSIS UNDER THE SUN.
SHE HAD CEREBRAL PALSY.
SHE HAD SCOLIOSIS.
SHE HAD SEVERE CONTRACTURES.
SHE HAD A FEEDING DISORDER WHERE SHE COULD NOT SWALLOW
AT ALL.
IF YOU GAVE HER LIQUID, IF YOU GAVE HER ANY KIND
OF TEXTURE, SHE WAS GOING TO ASPIRATE.
SHE JUST HAD--LET'S SEE.
WHAT ELSE?
MICROCEPHALY--YOU NAME IT, THIS KID HAD IT.
AND SHE WAS AT HOME WITH HER MOM,
A TEENAGE SISTER.
SHE WAS ABOUT--WHEN IT ALL STARTED TO GO SOUTH,
I GUESS SHE WAS MAYBE 11 YEARS OLD.
AND WE HAD WORKED WITH THIS FAMILY FOR A LONG,
LONG TIME.
SHE HAD SHIFT CARE, AND WE HAD CONCERNS.
WE HAD LOTS OF CONCERNS BECAUSE THIS FAMILY DIDN'T
HAVE A WHOLE A LOT OF RESOURCES,
AND NOT ONLY DID THEY HAVE THIS CHILD WITH THESE SEVERE
DISABILITIES, BUT THEY ALSO HAD TWO YOUNGER SIBLINGS,
TWO MALE SIBLINGS, WHO HAD PRETTY SEVERE--
ONE HAD PRETTY SEVERE ADHD, AND THE OTHER ONE HAD
PRETTY SEVERE AUTISM.
AND ALL THE FOCUS WAS BEING PUT ON THIS CHILD WITH THIS
MULTITUDE OF MEDICAL ISSUES, AND HERE WERE THESE OTHER
TWO BOYS WHO LITERALLY WERE JUST KIND OF FALLING THROUGH
THE CRACKS BECAUSE EVERYBODY WAS SO WORRIED ABOUT THEIR
SISTER.
WE TRIED--WE WORKED REALLY CLOSELY WITH THE PRIMARY
CARE OFFICE, AND OUR CONCERN--WE HAD SHIFT CARE
IN THERE FOR-- THEY HAD NURSING FOR 12,
16 HOURS A DAY.
WE TRIED AS MANY DIFFERENT THINGS AS WE COULD,
BUT THIS CHILD KEPT FAILING.
SHE JUST KEPT GETTING WORSE AND WORSE AND WORSE.
AND WE MAID MULTIPLE, MULTIPLE REFERRALS TO DHS,
AND FINALLY, AFTER SHE--THEY WOULD NOT TAKE THE CASE
BECAUSE THEY FELT THAT MOTHER WAS REALLY TRYING HER
BEST, AND THEY DIDN'T WANT TO GET INVOLVED
AT THAT POINT.
SO FINALLY, WHEN THIS CHILD LOST CLOSE TO 20 POUNDS,
AND SHE WASN'T VERY BIG TO BEGIN WITH, AND COULD NO LONGER
SIT IN HER WHEELCHAIR BECAUSE SHE WAS SO
CONTRACTED, THAT'S WHEN DHS FINALLY GOT INVOLVED.
AND WE WERE ABLE TO GET HER PLACED.
SHE WAS IN SUCH BAD SHAPE AT THAT POINT THAT MEDICAL
FOSTER CARE REALLY WASN'T AN OPTION.
SO SHE WOUND UP GETTING PLACED AT A LONG-TERM
RESIDENTIAL FACILITY THAT SPECIALIZES IN TREATING
HIGHLY MEDICALLY FRAGILE CHILDREN.
AND SHE THRIVED THERE.
SHE ABSOLUTELY THRIVED THERE.
SHE STAYED THERE FOR A YEAR AND DID REALLY,
REALLY WELL.
WE FOLLOWED HER THROUGHOUT HER STAY THERE,
BUT WE ALSO FOLLOWED MOM AND HER SIBLINGS.
AND WE WERE ABLE TO WORK WITH CBH AND PUT SOME
SERVICES IN FOR HER BROTHERS.
WE WERE ABLE TO GET SHIFT CARE SERVICES IN FOR HER
BROTHERS TO HELP HER MOM TO START TO GET BACK SOME
NORMALCY, AND WE THOUGHT THAT WE WERE ON A REALLY
GOOD PATH, BUT WE WEREN'T READY FOR REUNIFICATION YET.
BUT THE COURT FELT DIFFERENTLY.
SO THE COURT DECIDED, WAY BEFORE ANYBODY,
INCLUDING DHS AND THE FAMILY ADVOCATE,
THIS JUDGE IN ALL OF HIS WISDOM DECIDED
THAT THIS WAS TIME.
SHE WAS GOING HOME, AND EVERYBODY WAS IN A PANIC.
SO WE KNEW THAT WE HAD TO HAVE AS MANY SUPPORTS AS
POSSIBLE BECAUSE IF THIS CHILD GOT SENT HOME
AND WAS REUNIFIED WITH HER FAMILY, WE WANTED TO MAKE IT
A SUCCESSFUL TRANSITION.
THEY ORIGINALLY GAVE US A DATE THAT WAS SO RIDICULOUS.
IT WAS LIKE, "ALL RIGHT, WE WANT HER HOME BY THE END
OF NEXT WEEK."
SO WE LOBBIED, AND THANKFULLY,
THROUGH THE CHILD ADVOCACY OFFICE,
WE WERE ABLE TO GET THAT DATE PUSHED BACK
AND DELAYED.
SO WE WORKED WITH THE DISCHARGE PLANNER
AT THE FACILITY; WITH THE SHIFT CARE AGENCY,
WHO WAS ABLE TO PROVIDE SPANISH SPEAKING NURSES;
WITH THE DME COMPANY; AND WITH THE MOM AND THE PRIMARY
CARE DOCTOR'S OFFICE TO GO, AND WE ALL KIND OF DESCENDED
ON THE HOUSE ONE DAY AND FIGURED OUT A PLAN FOR JUST
WHAT NEEDED TO HAPPEN BEFORE SHE WOULD ACTUALLY GET HOME.
SO WE GOT EVERYTHING IN PLACE,
GOT COMMITMENTS, GOT ORDERS WRITTEN,
GOT THINGS AUTHORIZED, AND WE WERE ABLE TO HAVE ALL
BRAND-NEW DME EQUIPMENT IN THE HOUSE BECAUSE THE JUDGE
WAS UNDER THE IMPRESSION THAT,
WELL, HER EQUIPMENT WAS THERE FROM A YEAR AGO SO,
YOU KNOW, YOU CAN JUST SEND HER HOME.
WHAT HE DIDN'T REALIZE WAS THAT NONE OF THAT EQUIPMENT
HAD BEEN USED IN A YEAR, THAT THIS FAMILY LIVED IN
UTTER POVERTY IN NORTH PHILADELPHIA IN A HOME THAT
WAS ROACH AND RAT INFESTED, AND THAT MOST OF THE EQUIPMENT
HAD BEEN PRETTY MUCH BEAT UP.
A LOT OF IT, THE WIRES HAD BEEN GNAWED ON.
NONE OF IT WAS SAFE.
SO WE GOT ALL OF THE EQUIPMENT REPLACED.
WE GOT THE NURSING HOURS SET UP.
WE GOT ALL THE NURSES OUT THERE TO MEET THE FAMILY
BEFORE THEY EVEN STARTED.
WE GOT THE NURSES UP TO THE FACILITY TO MEET THIS CHILD
AND TO GO OVER HER ENTIRE PLAN OF CARE WITH
THE NURSING STAFF AT THE FACILITY SO EVERYBODY WAS
WELL TRAINED, INCLUDING THE MOM,
PRIOR TO HER COMING HOME.
WE WERE ABLE TO GIVE MORE HOURS THAN NORMAL
FOR THE FIRST MONTH FOR THE EASE OF THE TRANSITION,
AND IT WAS A REALLY SUCCESSFUL TRANSITION.
WE WERE REALLY, REALLY PLEASED WITH HOW IT TURNED
OUT, AND IT TURNED OUT A HECK OF A LOT BETTER THAN
ANY OF US THOUGHT IT EVER WOULD.
SO HAD THAT NOT HAPPENED, HAD WE NOT BEEN INVOLVED,
I REALLY DO BELIEVE WITH ALL MY HEART THAT THIS CHILD
WOULD HAVE WOUND UP BACK IN COURT AND TAKEN FROM HER
MOTHER ONE MORE TIME, PROBABLY PERMANENTLY
AT THAT POINT.
EITHER THAT OR SOMETHING HORRIBLY MEDICALLY WOULD
HAVE HAPPENED TO HER BECAUSE THERE WOULD NOT HAVE BEEN
THE SUPPORTS IN PLACE.
SO, I MEAN, WE CAN DO EXTREME THINGS LIKE THAT,
BUT WE CAN DO JUST THE DAY-TO-DAY OF,
"HEY, I DON'T KNOW WHERE TO TURN.
I DON'T KNOW WHAT TO DO.
I DON'T KNOW WHERE TO GO."
AND I BELIEVE IT WAS KATHY SYKES,
IN ONE OF THE VIDEOS THAT SHE SHOWED THIS MORNING,
WHERE IT SAID, "WE CAN'T GET YOU EVERYTHING YOU WANT,
BUT WE CAN STAND BY YOU."
AND THAT'S PRETTY MUCH HOW THE SPECIAL NEEDS UNIT WORKS.
WE CAN'T GUARANTEE YOU THAT YOU'RE GOING TO GET EVERY
SERVICE THAT YOU WANT.
WE CAN'T GUARANTEE YOU THAT EVERY PIECE OF EQUIPMENT
IS GOING TO BE AUTHORIZED.
WE CAN'T GUARANTEE YOU THAT A HEALTH STATUS IS GOING
TO CHANGE.
BUT WE CAN GUARANTEE YOU THAT WE'RE GOING TO PARTNER
WITH YOU, THAT WE'RE GOING TO WALK WITH YOU,
THAT WE'RE GOING TO HOLD YOUR HAND IF NEED BE,
THAT WE WILL DO EVERYTHING IN OUR POWER TO WORK WITH
YOU TO MAKE SURE THAT THAT MEMBER,
REGARDLESS OF WHAT THEIR AGE IS,
GETS EVERYTHING THAT THEY NEED IN THE MOST APPROPRIATE WAY.
THERE ARE TIMES WHEN WE GET REQUESTS IN FOR A HOME
HEALTH AID WHERE THE LETTER, THE CALL BACK TO
THE DOCTOR'S OFFICE WILL BE, "HOME HEALTH AID?
ARE YOU KIDDING?
DOESN'T THIS KID NEED A NURSE?"
SO THERE'S ALL SORTS OF OPPORTUNITY THERE.
THERE'S ALL SORTS OF POSSIBILITY THERE.
YOU JUST NEED TO PICK UP THE PHONE,
AND PLEASE--PEOPLE CALL EVERY DAY AND SAY,
"I DON'T MEAN TO BOTHER YOU."
YOU'RE NOT.
IT'S OUR JOB.
IT'S WHY WE'RE THERE.
WE'RE MANDATED BY THE STATE.
EVERY SINGLE MEDICAID HMO HAS A SPECIAL NEEDS UNIT
WITH DIRECT ACCESS.
YOU'VE GOT OUR NAME.