WEBVTT IE MARTIN, MAGGIECARLO AND METEOROLOGIST SHELBYHAYS.MARKIE: ALMOST ALL OF US KNOW ORLOVE SOMEBODY WITH A MENTAL --DEVELOP MENTAL DISABILITY.YOU MIGHT NOT KNOW THAT INOKLAHOMA THERE IS A WAIT LISTFOR PEOPLE TO GET HELP THEYNEED.ALMOST 8000 OKLAHOMANS WEIGHTEDAVERAGE OF 13 YEARS TO RECEIVEDEVELOPMENTAL SERVICES.HERE WITH US IS ERIN TAYLOR.SHE IS THE FAMILY ADVOCATE FORTHE OKLAHOMA DEVELOPMENTALDISABILITIES COUNCIL.PLEASURE TO MEET YOU.MY FRIEND AND REPRESENTATIVECINDY WAS THE FIRST ONE TO TELLME ABOUT THIS.I DID KNOW WAS A PROBLEM.YOUR SON HAS BEEN ON THE WAITINGLIST SINCE 2010?ERIN: MY SON IS 15 YEARS OLD ANDHE GOT ON THE LIST IN 2010.IN 2008 HE HAD A HEARTTRANSPLANT AT AGE FIVE.PRETTY SIGNIFICANT MEDICALSUPPORT BUT HE ALSO ASINTELLECTUAL DISABILITY.I'M REALLY CONCERNED ABOUTWHAT'S GOING TO HAPPEN WHEN HELEAVES HIGH SCHOOL.I'M A GOING TO HAVE TO QUIT MYJOB AND STAY HOME AND CARE FORHIM?THE DISABILITY SPORTS WE NEEDFOR OKLAHOMANS FOR -- SUPPORTSWE NEED FOR OKLAHOMANS LIKETHIS.MARKIE: IT SEEMS LIKE A BROADPHRASE, BUT WHAT CONSTITUTES ADEVELOPMENT OF DISABILITY?ERIN: IT IS DEFINED BY THEFEDERAL GOVERNMENT AND THAT CANBE WHERE A PERSON HAS DEFICITSIN ANY MAJOR LIFE EVENT LIKESELF-CARE OR FINANCIALINDEPENDENCE, OR THE ABILITY TOCOMMUNICATE.IN THREE AREAS THAT IMPACTSDEVELOPMENT, IT IS A LIFELONGDISABILITY.IT OCCURS BEFORE THE AGE OFADULTHOOD.MARKIE: THANK YOU FOR CLARIFYINGTHAT BECAUSE I WAS WONDERING WHOALL MIGHT BE ELIGIBLE FOR THESESERVICES.LET'S DELVE INTO THESE NUMBERS.ALMOST A THOUSAND OKLAHOMANS ON-- ALMOST 8000 OKLAHOMANS ON A13 YEAR WAITLIST.ERIN: THE MEDICAID WAIVERS AREFUNDED TWO WAYS.PARTLY BY THE FEDERAL GOVERNMENTPAYS THE MAJORITY AND THE OTHERIS THE STATE.THE STATE LEGISLATURE HAS CHOSENFOR YEARS TO NOT ADEQUATELY FUNDTHESE MEDICAID WAIVERS.IN ADDITION, OCCASIONALLY THEYGIVE US A $1 MILLION REPARATION,BUT THEY DON'T ANNUALIZED IT.WE ARE NOT COVERED EVERY YEAR.WE HAVE FAMILIES WHO APPLY EVERYYEAR -- 200 FAMILIES WILL APPLYEVERY YEAR AND GET ON AND ONLY50 TO GET OFF.MARKIE: I IMAGINE THE BUDGETCRISIS IS NOT HELPED AT ALL.ERIN: IT HASN'T HELPED ANYOKLAHOMAN.FOR THOSE WAITING OVER A DECADEFOR SERVICES, MY CHILD ISFORTUNATE NOW, BUT WE HAVE80-YEAR-OLD ON THE WAITING LIST.MARKIE: THE OLDER ONES MIGHT NOTEVER GET THE HELP.ERIN: THE ADULTS ON THE WAITINGLIST WITH NO OTHER FORM OFSUPPORT.MARKIE: DESCRIBE THOSE SERVICESTHEY ARE WAITING FOR.WHAT ARE THEY WAITING FOR ANDTALK ABOUT THE DETRIMENTS TOWAITING THIS LONG TO RECEIVEHELP.ERIN: WHEN YOU GET TO THE TOP OFTHE WAITING LIST AND YOU AREDETERMINED ELIGIBLE BY THOSEGUIDELINES, THEN DDS WILL STEPIN AND HELP BUILD A PLAN RIGHTAWAY.YOU MADE IT HELP PAYING FORADDITIONAL PRESCRIPTIONS, YOUMAY NEED A SAFE PLACE TO LIVE,YOU MAY NEED SOMEONE WHO HELPSWITH PERSONAL CARE, VOCATIONALTRAINING.IT IS NOT A POT OF MONEY.IT DOESN'T NECESSARILY PLACE YOUIN A GROUP HOME FACILITY, ITPROVIDES YOU OPTIONS AND CASEMANAGEMENT WHICH CAN SAVE YOURLIVES.LIVES ARE SAFER WHEN THEY HAVEDISABILITY SUPPORTS.THIS IS A POPULATION MOST LIKELYIN THE COUNTRY TO BE SEXUALLY,PHYSICALLY AND FINANCIALLYEXPLOITED.MARKIE: HAVE THERE BEEN DEATHSBECAUSE OF THIS WEIGHT?IS THIS CAUSING SO MUCH --SOMETHING MORE SEVERE?ERIN: THERE HAS BEEN A LOT OFEROSION IN LIFE QUALITY.PEOPLE OF IT IN DANGEROUSCIRCUMSTANCES.THE WAITING LIST IS A MATTER OFLIFE OR DEATH.MARKIE: I KNOW SUMMING ALSOWANTED TO TOUCH ON, WAITING LISTMEETINGS.WHAT ARE THOSE AND WHAT ISDECIDED THERE?ERIN: THERE IS A STATE ADVOCATEWHO OVERSEES THE -- SHE TOLD THESE QUARTERLYMEETINGS AND AT THOSE MEETINGS,MEMBERS ATTEND, LEADERSHIPATTENDS.THE DIRECTORS OF DDS IS THEREAND ALSO LEGISLATURES COME --LEGISLATORS COME.DHS GIVES A BUDGET UPDATE ONWHERE WE ARE ON THE WAITING LISTRIGHT NOW.FAMILIES SHARE THEIR STORIES ANDWE TALK ABOUT A CHILD TURNING18, WHAT IS GOING TO HAPPEN?I'M AT THE COUNCIL WHEN AN85-YEAR-OLD MOTHER WALKS IN ANDSAYS I FINALLY HAVE THAT CANCERDIAGNOSIS, MY SON IS 60.I'M A WIDOW, NOW WHAT.MARKIE: DOES YOUR SON UNDERSTAND-- I KNOW YOU ARE SPEAKING FROMYOUR MOTHER'S PERSPECTIVE.AS YOUR SON UNDERSTAND THESEVERITY OF WHAT HE IS WAITINGFOR AND WHAT'S HAPPENING TO HIM?ERIN: MY SON'S AMBITION IS TO BEAN ANIMATED FILM CRITIC.THEY TALK ABOUT THEIR BIGDREAMS.HE UNDERSTANDS WE HAVEEXPECTATIONS HE WILL LIVE ON HISOWN AND HAVE A JOB AND IT ISDIFFERENT FROM HIS BROTHERS ANDSISTERS.WE TALK ABOUT SUPPORTS AND WHATHE WILL NEED.I FEEL LIKE I'M HAVING ACONVERSATION WITH HIM ABOUTTHINGS THAT CAN HAPPEN.MARKIE: I'M PRAYING HE GETS THEHELP THAT HE NEEDS AND YOU DO ASWELL.WHAT NEEDS TO HAPPEN HERE?WHAT DO WE NEED TO SEE FROM THESTATE LEGISLATURE LEVEL, WHONEEDS TO COME FORWARD?ERIN: TWO THINGS NEED TO HAPPEN.WE NEED EVERY FAMILY TO TALKABOUT THAT HER EXPERIENCE ANDTHE DISABILITY SUPPORT THEYNEED.WE HAVE AN OUTSTANDING PROGRAMFOR FAMILY ADVOCATES.I INCURRED FAMILIES TO FIND OUTMORE AND APPLY.OUR LEGISLATORS MUST COMMIT TOANNUALIZED FUNDING.THIS SHOULD BE OUR STATE SHAMETHAT WE HAVE THIS.WE HAVE A CONSTITUTE A GROUP OFLEGISLATORS WHO ARE WORKING THISISSUE COMMITTED TO HAVING THEIRVOTES REFLECT THEIR INTENTIONSTO ADDRESS THE ISSUE.WE HAVE GOT TO HAVE PROMISEDTHIS YEAR.MARKIE: MAYBE WE CAN GETSOMEBODY ON THE SHOW TOO, ONPRETTY CINDY MAYBE.ERIN: ABSOLUTELY.MARKIE: ERIN TAYLOR, THANK YOUSO MUCH FOR COMING ON.8000 OKLAHOMANS WAITING 13 YEARS