No Place Like Home

During my time on the Ohio Developmental Disabilities Council, I learned of the passion that disability advocates have for community services. There is a constant battle going on between the grass roots disability champions and the providers of services rooted in the old model - institutions and nursing homes. One of the most visible national disability organizations, ADAPT, is dedicated almost solely to the proposition that people with disabilities need to live in community settings and be freed from a lifetime of being locked away in nursing homes.

There was a member, Todd Gatewood, who has severe cerebral palsy, who had lived most of his life in an institution. With the help of self-advocates and other people with disabilities encouraging him, Todd was able to envision a life for himself beyond the walls of the institution. With the help of personal assistants and others in the community, Todd has lived in the community for over 10 years, and has become one of Ohio's leading disability advocates.

Community placements are often (but not always) less expensive for the taxpayers. They give people with disabilities more freedom and more autonomy, and it places people with disabilities where they belong - in the heart of our communities. And inherent in every community-based policy agenda is one assumption: that community placements are likely to be better for people with disabilities, even if they don't know it yet.

But, as they say, there are two sides to every coin.

For some people with disabilities, nursing homes or institutions are not just some warehouse or segregation unit -- they are home. For Sara Schnell, the Beatrice State Developmental Center in Beatrice, Nebraska, was the only thing she had ever known to be a home. Unfortunately for Sara, who had cerebral palsy and used a wheelchair, there were those who felt she would be "better off" somewhere else, somewhere that was better equipped to care for her.

Last year, an 18-year old resident of Beatrice had a very serious seizure and the response of the staff at Beatrice was less than sufficient. The young man died and, shortly thereafter, the state ordered all "medically fragile" residents to be transferred out. This included Sara who had lived at Beatrice for 52 years. The adjustment was going be be profound.

Schnell was well-known around campus and people there understood her way of communicating, (stepbrother Garry Wheeler) said.

In February, the state - against the objections of her family - placed Sara in an apartment in Lincoln, over 40 miles away. Removed from her friends, the familiarity of her surroundings, and the comfort of her regular schedule, Sara began to deteriorate.

(Wheeler) said she first got sick around April, during her initial hospital stay. He said she aspirated on saliva, and he believes that was because she spent most of her time lying in a bed, unlike at BSDC, where she was in her wheelchair more often and doing activities.

She was moved from the apartment to a hospital unit in Lincoln, followed by a brief stay in the nursing home. She was then moved back to her apartment for a brief time, before being re-admitted to the hospital. At the end of June she began receiving hospice care at a nursing home until she passed away July 2. She was 65 years old.

Her family is not pleased with how her life ended.

“We could see her emotional health deteriorate with each move and it was manifested in that we feel that she just gave up fighting for her life,” (Wheeler) said in an e-mail. “Part of her physical and mental degradation was finding out that she couldn’t ever return to the familiar surroundings of the BSDC campus.”

Of course, one can never know if these problems would have arisen if she had stayed. But within the movement of community living, some consideration has to be given to the Sara Schnells of the world. One shouldn't assume that the increased freedom and autonomy of a community placement will necessarily outweigh what they will give up in comfort and familiarity. Sometimes, the best place to be is home -- however she defines it.