Home! That little one-syllable four-letter word has a great sound to it, doesn't it? Longing for a home is the subject of many poems and stories. One of the most well-known that reflects our culture is Dorothy's quest for her home in The Wizard of Oz. This story resonates with us on so many levels, but perhaps the strongest connection is related to the “American dream” of owning a home.
No matter whether the memories of our childhood homes are good or bad, most of us have a sentimental attachment to the concept of home, and we instinctively recognize for ourselves what the ideal home includes and what it doesn't. “Home is where the heart is” describes the “specialness” of the place we call home. We saw a T-shirt the other day that said “Home is where you have the remote”; we certainly each have our own unique values and priorities for our homes!
These are the ideas we pondered as we prepared to write this column on community living for people recovering from behavioral health issues. We also digressed, pulling up memories of all the things our field has done to people in the name of community living. Many of us were around during the years of deinstitutionalization, which in almost every instance was really reinstitutionalization. Since we didn't know that people could recover, we assumed they needed the same things offered in institutions, plus a lot of medications.
Continuums of “Care”
The early attempts to provide living arrangements often were called “continuums of care.” The idea was that people would start out in highly restrictive housing where every move was scrutinized and supervised. These places often were more restrictive than state hospitals had been because they had no outdoor areas. If by some miracle the person began to get better (which usually meant he was willing to do exactly what he was told to do), he would be moved to a slightly less restrictive setting. These continuums often had several steps, and if people weren't willing to do what staff thought they should do (we used words like “decompensate,” “relapsed,” “uncooperative,” “treatment- resistant,” and “unmotivated”), they were moved back to a more restrictive setting. Of course, many people found themselves without a home and were out of the housing services loop altogether.
In many communities the first settings people were “placed” in were board and care homes. These were, and in many cases still are, substandard environments that in no way encourage recovery (see the April issue, page 10). The second setting that appeared on the scene was nursing homes. These were a replication of the hospital environment but with less freedom. Continuums of care included board and care facilities, nursing homes, and group homes, with very limited opportunities for independent living.
At the time, the profession seemed to like this idea of being able to move people up and down, back and forth, and we did it quite often. We thought we had a care continuum but, in truth, what we really had was a continuum of control. It didn't occur to us until much later that it would be better to have the staff move instead of moving service users around. This lack of insight was fueled by economics and convenience, since it was more lucrative and comfortable for staff to move people around.
The result was that people were trapped in settings that did not promote recovery. Few communities developed a real continuum of care because it was too expensive to have settings for different levels of community living. However, the continuum of care concept remained the standard toward which community living programs were designed, and moving people without their approval became an accepted practice.
Once we understood that people can recover, we began to learn ways to assist them in that process. It didn't take long to realize that the “continuum of care” we were so proud of was fatally flawed, with two particularly glaring flaws:
Moving people around didn't allow them to develop supportive relationships that could help them sustain recovery. Think about how difficult it is to move to new places.
There were no opportunities to make choices, one of the fundamental aspects of recovery. The biggest choice of all (“Where do I want to live?”) was left to the “placers.”
Karen's experience illustrates the negative impact of this well-meaning but flawed approach.
“I knew they were thinking of putting me out of the hospital, but I didn't know where. They took me to look at a couple of places and asked me which one I liked the best. Then several weeks went by, and they placed me in another place I had never seen before.
“For the first couple of days I had a room to myself, and then they moved another person in with me. I had made friends with a girl named Helen and asked if we could be roommates, but they said no. When I asked why, they said they couldn't discuss it. I missed the friends I'd made at the hospital.
“My new roommate and I didn't get along. After a few days the staff pulled me aside and told me that if I didn't get along with my roommate, I would be sent back to the hospital. This was OK with me. Why would I want to stay here anyway?
“Then a space opened in what they called a ‘less restrictive’ facility, and they needed someone to go in that bed. I don't think it had anything to do with my condition; it was just a matter of keeping all the beds full. So they moved me there. I wished Helen could have come too, but there was only one bed.