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What Happened?

I cannot imagine the pain my son, Will, and his peers would endure if group homes and sheltered workshops were to close in Delaware.

What would the scenario be likely to look like at work?
The evening would come when Will would start to pack his lunch for the next day at Delaware Elwyn (non-profit sheltered workshop). And a group home staff member would have to tell him he need not pack it. Will would not understand and would go to the door the next day to wait for his “bus” (really a van) anyway. But no van would come ever again. Finally, Will would get it. His work is dead. Will understands dead. Several friends have died and last fall his father died. Now the place he has been eager to go to work daily for years is dead. About each person, while knowing they are gone, Will asks, ‘What happened?” over and over again. Now that same question is repeated about Elwyn, “What happened?”

Surely one would think, something will replace the workshop. However, Is it true when another state went down this path, those who could not be competitive in the workplace went to Day Habilitation? The ones who for some reason did not get to Day Habilitation – is it accurate they are sitting at home? How, then, are these citizens with disabilities better off now than when they had the dignity of work to do, friends at the workshop, and a paycheck?

[Will has a very strong work ethic, instilled by his father’s taking him to work at the DuPont Company. The last time I visited Elwyn, staff reported Will was working so fast at times, the supervisors could hardly had count the number of blue x-rays he had separated from gray x-rays before he had another stack ready. It was very challenging for Elwyn to find a task that matched Will’s capacities. The x-ray job is the best ever.]

Moving on, how would the living situation work out?
After the end of the workshop, Will would believe he still had his family at the house. The staff members who had been with him since he arrived at his Mosaic group home 21 years ago as well as the guys at the house would be there to support each other.

BUT, the next thing Will would see would be his room being packed up. Packed up for what? People would be crying. Why are they crying? Will would be led out of his home. He would get in a car and go somewhere. Will would never return to his home.
Slowly, Will would come to realize his home is dead too. Gone forever. “What happened?”

My son and his peers throughout Delaware would experience grief beyond all grief that had ever been experienced before in their lives. Horrendous shock would certainly set in for many who would adopt the same vacant stares as people have who have experienced other large disasters. At least one difference would exist — most of the
people who are disaster victims understand what happened. Will and many others like him would not have a clue. What does their emotional life now become?

Description of Will with his current challenges

Will, at 42, is a pleasant man who has a great love of life at Mosaic. Will speaks infrequently. When he does speak, his voice is a whisper that many times cannot be understood. Will does not do well on his feet for any appreciable period of time.
His esophagus was not connected to his stomach at birth and we think scar tissue from the surgery to connect them is the reason for his vomiting easily and frequently. Will has a very hard time with change — even good change that he likes. He may stay awake most of the night when he goes from Mosaic to my house, for instance — in great anticipation of his breakfast. Will’s comprehension level is variable. If Will is asked if he wants to do something that he enjoys, and if he understands the question, he will say “yes” and go to the front door to wait for his ride, even though the event may be several days away. To Will, saying “yes” means now. Will walks slowly and can certainly frustrate a whole line of people behind him at a baseball game — all climbing to take seats. Will’s last tested I.Q. was 29 some years ago. I do not know what “29” means, but the behaviors that accompany that number are shown in examples here.

Will can dress himself, but cannot attend to most of his personal needs other than dressing. His hypotonia and lack of capacity to handle toilet paper or a toothbrush
prevent achievement of some of the usual activities of daily living. Yet, Will is meticulous in his table manners, loves to “dress up”, and loves going to restaurants. . Will shops in the community, does his banking every Friday, eats dinner out every second Friday, participates in picnics, bowls, swims at the Y, dances, goes to baseball games and attends Sunday School.

Every one of these activities has been initiated by Mosaic Fairfax staff who accompany Will and others to each outing.

What is in store for Will and all the other people who need and now enjoy their group home living if the homes are closed? As his 65 year old mother with physical limitations, there is no way I can care for Will day in and day out. The psychiatrist who addressed the State of Delaware at the time of Will’s entry into the Mosaic home stated then, and the same is true now, Will requires 24 hour care and supervision. Beyond not being able to care for Will, there is no way I could ever approach the community integration that Mosaic achieves for Will.

So, what is left for Will — Shared Living/Foster Care? As a former Director of the Division of Family Services, the agency responsible for Delaware’s children’s foster care, would not widespread DDDS population foster care for adults be subject to the same stresses as those faced by children’s foster care? There were never enough resources to properly support foster parents. There were never enough resources to properly monitor and establish accountability in foster homes. There were never enough resources to fully train and prepare foster parents for the awesome jobs they were called upon to perform.

Consequently, it was not unusual for a child growing up in the State’s foster care system to experience 20 to 40 different foster care placements before reaching adulthood.

Is the scenario described above or any one similar to it really the path our federal and state government want to pursue for citizens with disabilities in Delaware?

I have heard many times that one of the main functions of government is to care for the people who cannot care for themselves. Has there ever been any truth to this type of statement?

If so, “What happened?”

Permanent link to this article: http://www.familiesspeakingup.com/2012/10/22/what-happened/

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