Frontline Initiative Change

I would like to share with you the story of my friend Sally and how moving from a nursing home to a group home affected her life. As a cofounder of Self Advocates Becoming Empowered (SABE), I have met and worked with many people with disabilities and have fought for the inclusion of individuals in our society. Sally was no exception.

I met Sally about three years ago when I got a job at the nursing home where she lived. Helping her eat was my only task. She had cerebral palsy, and had difficulty swallowing. After spending many hours with her, I discovered that the only extended time she spent with anybody else was when she was eating. It was no wonder that she enjoyed her mealtimes so much.

After about eight months, I decided that I didn’t want to be paid to be her friend and quit my job. I went in and told her. She didn’t understand my reason for leaving and was upset. I sat down with her and kept questioning her about her friendships. She kept telling me over and over that she didn’t have any friends. The only people in her life were her family and nurses. I had a difficult time accepting this. Finally, I asked her why she was upset: “Are you upset with me because you can’t understand why I want to be your friend — just to be your friend?” She nodded her head and began to cry.

Sally had to have more friends, I decided. I suggested to her and her mother that she move into a group home. I wanted to let her know about the possibility, at least. After a year of looking, Sally hesitated to make her decision. She wanted to be able take her own furniture with her and wanted her own room. She was also afraid of how people would view her living in a group home. She overcame her apprehension, however, and decided to move to a group home in the same area where I worked. She loved it. She got her own room and was able to decorate it the way she wanted. She was treated as part of the family, and she was very happy. We were elated.

One day, I went to her new home to visit her. The staff would not let me see her. I was baffled. How could this be? I went back two weeks later. Same story: “You can’t see Sally.” In my outrage, I went to our regional director and explained to her what was going on. We paid the house a visit. When we got there, the staff were surprised to see me with our director, and they let us in. We found her in bed, with sores and stiff. She had not been moved for some time, and her stretching exercises had not been done. They had been feeding her in bed, isolated from the rest of her housemates, and she had lost 40 pounds since she moved in. I insisted that she be moved out immediately. Our director informed me that there was no place for her to go; we agreed with the group home to give them two weeks to help Sally get better or find another place for her to live. Things changed for the worse. On the day that I was supposed to go back, her staff called me and said that she had turned blue and quit breathing. She had been transferred to the hospital. I went to the hospital. She turned blue two more times. Nevertheless, Sally fought back.

We began to look for another place, but because of the bureaucracy, it would take too long. The group home was still able to take her back, temporarily. Our search, however, did not prove very fruitful: another nursing home was our only solution at the time, and this nursing home would only take her under the condition that she must have a gastrostomy tube inserted into her stomach for feeding. They did not want to spend the time required to help her eat. With the reluctant consent of her guardian, the procedure was done and Sally moved into the nursing home. She was devastated. Not only had she lost her hope of finding a better home, and moved back to a nursing home, but this time with even less interaction with people and without her favorite daily pleasure — eating.

 This neglect should never have happened. We had thought that the move to the group home would automatically help her be more independent and she would be treated as an individual, but in this instance it turned out in disaster.

Sally eventually moved from that nursing home to a home in the community with nursing care. Eventually, she passed away there. She received adequate care there from nursing staff and was treated as an individual. I visited her and took her out for dinner, bowling, conferences or whatever she wanted to do. Even these outings had their share of obstacles, but through persistence, we managed to get out and be a part of the community. Sally made changes in her life in order to be more involved in the community and asserted herself as an individual in it.

The alternatives for homes for people in situations like Sally must improve, though, so that they have better choices and better services, and so that the change in their lives will be for the better.