Debbie Simon’s parents came to Florida from California.  They had immigrated to the US from Jamaica in the 1940’s.  Proud people, the Simon’s were hard working, upper-middle class business owners.  Debbie is a woman in her late forties who was born with developmental disabilities.  However, like her parents, she is amazingly competent. 

When Debbie’s father died, everyone assumed that Debbie would be all right because it was well known that the family had put aside finances to take care of her.  What they didn’t realize was that a younger sister had been taking from the family large chunks and pieces of their financial security.  The Simon’s could not be rational about giving to this daughter because there were grandchildren involved.  They could not allow their grandchildren to live in poverty.

Mrs. Simon had been casual friends with Debbie’s social worker for years.  After her husband’s death, she and the social worker became close friends.  Mrs. Simon was in poor health.  Cancer was slowly eating away at her body.  It appeared that she only had a few years to live. 

Even though the Simon’s had always been overly protective of Debbie when Mr. Simon died, Debbie’s mother was left in an uncomfortable position.  She could not take care of herself anymore, much less Debbie.  The oldest daughter in the family pleaded with her mother to come back to California and live with her.  Debbie didn’t want to leave Florida. 

Mrs. Simon felt torn, how could she leave Debbie?  Yet what was worst, leaving Florida or putting Debbie in the position of having to take care of her mother as her body slowly deteriorated?

Her friend, the social worker, convinced Mrs. Simon that if she left Debbie, the State would be able to take good care of her precious daughter.  To this grieving widow, it seemed like the only loving and practical thing to do.  She could not bear to rip her daughter from her friends, church and job.  However, Mrs. Simon knew that she was dying.

The day came that Mrs. Simon closed the condo and kissed Debbie good-bye.  Debbie had moved into an apartment.  She could keep her job, her friends and her church, the social worker had assumed both of the women.  Mrs. Simon was comforted that her dear friend, the social worker, would oversee Debbie’s well-fare.

However, the rest of the story is not as happy as Mrs. Simon had hoped.  Within a month, things began to fall apart.  Debbie had been moved 20 miles from the restaurant where she was a hostess.  After a month, her transportation funding was exhausted.  Debbie would have to quit her job. 

The apartment was in a small town. There were no stores, restaurants or movie theatres near by.  Debbie was stuck at home night after night.  Her once active social life came to screaming stop. 

Debbie became depressed.  After all, in less than three months, she had lost her father and mother.  She had lost her job and most of her friends because they also lived 20 miles away.  She was a middle aged woman who had lived with her parents all her life.  Now her life seemed to be spinning like an out-of-control Ferris wheel.  She felt as though part of herself had been ripped away and she stood exposed to the grief.  And she was grieving all alone.

When Hurricane Frances hit Central Florida, Debbie got a phone call from her supported living coach.  She was told to go into her bathroom, lock the door and wait out the hurricane.  She was reminded to take some cans goods and can opener into the bathroom so she would be able to eat.  Obviously, her coach forgot that her can opener was electric.  Her supported living coach could not be reached for three or four days because she was going to North Carolina taking her family to safety.  Debbie would have to survive the hurricane alone.

Terrified, Debbie called her pastor, Richard Stimson of Special Gathering.  He had received several other phone calls from other independent living members who had been left to brave the storm without any supports.  He went to work and found a place where they could evacuate.  Quickly, he and his wife, Nancy, moved to find a van, pick up the men and women, and leave town.

I have changed the names and some of the circumstances but I assure you that this story is true.  And I could tell you many more.  There was Mary Jane who was moved into an apartment at 21.  She was raped repeatedly by the maintenance man. 

Margarita accidentally poured boiling hot water on her chest late Friday afternoon.  When she called for help, she could not reach anyone on the phone.  Finally, she was told by an answering service that she would have to wait until Monday at 9AM when her staff came into work.  When she came to Special Gathering, she was taken to the hospital emergency room.  She had severe burns that were quickly becoming infected.

This is not a vindication against independent living coaches.  They are paid to come a few hours each month.  Usually, they go above and then above again what they are paid to do.  But the present system is not working, at its best, and broken, at its worst.

There is a great desire within our community to be independent.  Families desire this because it is a normal progression within the life cycle of an adult.  But there needs to be a middle ground, a safe place where men and women who are intellectually delayed are protected and can function within a social structure that does not leave them vulnerable, depressed and desperately lonely.

What do you think the solution would be?  Would a cloistered community help to provide this safe environment?