Beruflich Dokumente
Kultur Dokumente
MY EXPECTATION, HOPES, DREAMS AND VISION OF THE FUTURE WERE THE SAME
FOR ED AS THEY WERE FOR HIS THREE YOUNGER SIBLINGS. I HAD
WHAT A SURPRISE WE WAS IN FOR WHEN WE WERE MET BY THE FIRST MAJOR
BARRIER TO INCLUSION: THE PUBLIC EDUCATION SYSTEM.
A FEW OF YOU MAY RECALL THE 1960'S. IT WAS A TIME WHEN PEOPLE WITH
DEVELOPMENTAL DISABILITIES WERE INSTITUTIONALIZED, HIDDEN AWAY BY
FAMILIES AND SOCIETY. THE CHILDREN WITH DISABILITIES THAT WERE IN PUBIC
EDUCATION WERE IN ROOMS WITH VERY LITTLE SUPPLIES, CLASSES NEXT TO
THE BOILER ROOMS, ROOMS WITH BARS ON THE WINDOWS AND SCORNED BY
EDUCATORS AND OTHERS. ED’S PLACEMENT IN PUBLIC SCHOOL WAS SHORT,
AND NOT SO SWEET. . ED WAS EXCLUDED, AND TOLD PUBLIC SCHOOL WAS NOT
FOR THE LIKES OF HIM . . .
AS YOU MAY IMAGINE, BY VIRTUE OF THE FACT THAT I HAVE THE HONOR OF
PRESENTING ED’S STORY, I BEGAN THE ROAD TO ADVOCACY, BRINGING WITH ME,
MY BELIEVES AS TO WHAT QUALITIES ED WOULD NEED TO BE HAPPY AND
SUCCESSFUL IN HIS LIFE.
THUS THE JOURNEY BEGAN A JOURNEY THAT HAS BEEN FULL OF MANY
FOUND OTHER PARENTS WHO WERE IN SIMILAR POSITIONS AND OF SIMILAR MIND.
FROM THE BROADER COMMUNITY. DURING THIS PERIOD WE DID NOT HAVE THE
WE NEEDED TO FIND THOSE WHO SHARED OUR VISION FOR OUR CHILDREN’S
FUTURE.
NOT LONG AFTER ED WAS EXCLUDED FROM SCHOOL, I CONTACTED OUR LATE,
SCHOOL SYSTEM REMINDING THEM THAT ALL CHILDREN, INCLUDING ED, WERE
TO RECEIVE A FREE PUBLIC EDUCATION, REGARDLESS OF THEIR LIMITATIONS.
SEVERAL WEEKS AFTER THE LETTER FROM SENATOR FOGARTY WAS RECEIVED BY
DURING THE 1970'S THE SCHOOL SYSTEM DECIDED ED’S NEEDS WERE ONCE AGAIN
BEYOND THE SCOPE OF WHAT THEY COULD PROVIDE TO HIM IN PUBLIC SCHOOL
PROVIDE? .
WITH OTHER PARENTS OF LIKE MINDS WERE HELD. ONCE AGAIN WE SOUGHT
OUT AND FOUND EDUCATORS WHO WOULD LISTEN AND TRUST THAT THE
A PROGRAM WAS DEVELOPED FOR ED, AND OTHER CHILDREN WHO HAD
WITHIN THE PUBLIC SCHOOL SYSTEM, AND TO REMAIN AT HOME WITH THEIR
FAMILIES.
AND DEVELOP PROGRAMS AND SUPPORTS THAT PROVIDE FOR HIGH QUALITY
AND IT WAS A VERY PROUD DAY WHEN HE GRADUATED IN JUNE OF 1981 AT THE
AGE OF 21.
SCHOOL ENDED AND THE ADULT D.D. SYSTEM, FOR WHICH WE WERE TOTALLY
THE TRANSITION TO THE ADULT D.D. SYSTEM HAPPENED. ONE DOOR CLOSED AND
THE NEXT DOOR WAS TO OPEN. I EXPECTED SUPPORTS SIMILAR TO THOSE HE HAD
SEVERAL OF US BEGAN MEETING WITH EACH OTHER AND THEN WE REACHED OUT
STATE OFFICIALS AND OTHERS TO DISCUSS OUR NEEDS FOR MEANINGFUL DAY
OUR GROUP AND CAME TO KNOWN AS PARENTS AND FRIENDS FOR ALTERNATE
LIVING (PAL).
PEOPLE WITH DISABILITIES AND THEIR FAMILIES, AND TO HELP THEM ACHIEVE
WE LEARNED THAT THE BOARD OF DIRECTORS OF THE LOCAL ARC’S. WAS THE
DAY SUPPORTS DURING THE LATE 1980'S AND INTO THE 90‘S WAS BEING ABLE TO
BUSINESS CARDS AND ALL. WITH ASSISTANCE FROM HIS JOB COACH HE WAS
AVAILABLE TO EITHER GO TO A PERSONS HOME OR BUSINESS AND CLEAN THEIR
NEED TO SEE CASH IN HAND AS A RESULT OF THE WORK HE DID. IT MADE IT REAL
FOR HIM; WORK, MONEY, YES. HE MAINTAINED THE BUSINESS FOR SEVERAL
DELI,” WHICH IS LOCATED IN ONE OF THE ARC’S SUB SITES. HE AND OTHERS
HELP TO SHOP FOR THE GROCERIES AND SUPPLIES, PREPARE AND SELL THE FOOD
ED WAS SHOWING SIGNS DURING THE 1990'S THAT HE WAS READY TO MOVE FROM
FOR HIS NEW HOME TO PROVIDE THE SAME KIND OF ENVIRONMENT THAT ED HAD
BEEN ACCUSTOMED TO. WE HAD CERTAIN QUALITIES AND STANDARDS FOR ALL OF
WHILE ED MAY HAVE BEEN READY TO MOVE INTO THE COMMUNITY, THE
COMMUNITY WAS NOT YET READY TO PROVIDE FOR ED. "ATTITUDE" ONCE AGAIN
BECAME MORE VOCAL IN EXPRESSING HIS NEED FOR CHANGE. OH NO, NOT A
POSSIBLE THAT BY EDDIE GOING OUTSIDE HIS HOUSE AND POUNDING ON THE
HOUSE WERE HIS WAY OF SHOUTING OUT TO ALL OF US, TELLING ALL OF US
FOUND THAT WOULD BE WILLING AND ABLE TO PROVIDE QUALITY SUPPORTS AND
A MEETING WAS ARRANGED FOR EDDIE TO MEET WITH THE DIRECTOR OF THE
DIVISION OF D.D. HE ATTENDED THE MEETING WITH HIS SISTER, DOREEN, AND
MYSELF . . . ED SEATED HIMSELF AT THE HEAD OF THE TABLE AND PRESENTED HIS
HAD TO MOVE. WHEN THE DISCUSSION WAS FINISHED, A PLAN WAS WRITTEN THAT
INCORPORATED SHORT TERM MEASURES TO MAKE ED’S LIFE HAPPIER AT HIS HOME
I’M THRILLED TO REPORT THAT SEVERAL MONTHS AFTER THE MEETING, IN THE
QUALITY SUPPORT THAT AGENCY PROVIDES ARE THOSE THAT I KNOW WILL
FOR EXAMPLE THE STATE WIDE QUALITY CONSORTIUM, BRINGS TOGETHER PEOPLE
FOR THEIR PERSON WITH A DISABILITY. THE BOOKLET SUGGESTS INDICATORS AND
THE HEALTH AND SAFETY SUB COMMITTEE OF THE CONSORTIUM HAS PRODUCED A
DOCUMENT THAT PROVIDERS CAN USE WHEN ASSESSING THE MOST AT RISK
POPULATION AND TO USE TO DEVELOP STRATEGIES TO PREVENT SERIOUS
TO REVIEW AND COMMENT UPON THE RULES THAT WILL ALLOW OUR PEOPLE TO
DECISION MAKERS WHO ARE OPEN TO LISTENING AND CHANGE NETWORK AND
FAMILY MEMBER, BEING WILLING TO TALK THE TALK AND WALK THE WALK,
I FULLY AGREE WITH DANNY THOMAS WHEN HE SAID, “ ALL OF US ARE BORN