“I figured by now, since 1995, since River’s Crossing closed and Brook Run closed — I thought surely that everybody, at least in Georgia, lived at home,” says Lori Bagnell. In 1995, Lori’s son, Chase, was the first child in Georgia to leave an institution (River’s Crossing in Athens, Georgia) and move into his own home in the community with the assistance of 24-hour caregivers.
Lori is surprised that today, ten years after Georgia’s first child left an institution for life in the community, still more than 150 children live in nursing homes and institutions throughout Georgia.
“I hope to be able to help other children like Chase,” Lori says, “and we cannot have any of them in institutions or nursing homes.”
Lori knows what institutional life is like for a child through personal experience. “I was one of those parents who said I would never put my child away — in an institution or even away from home,” she says. “I was so wrong.”Lori tried everything imaginable to obtain assistance that would allow Chase to remain in the family home. Chase, who was seven in 1993, had become more difficult and extremely hard to handle Lori says. “I began to seek some kind of help and found out real quick there was not any out there,” she says.
Chase’s teachers were unable to control him and constantly called Lori to pick him up from school. Lori thought that of all people, teachers trained to work with kids with disabilities should be able to work with Chase. She felt she had no where to turn. “Everybody was putting him off on everyone else,” she says.
The school recommended Cobb County Mental Health, but she was sent from there to Cobb County Mental Retardation Center. The doctor there said Chase was “uncontrollable and needed 24-hour supervision.” The doctor issued a 10-13 (an order to admit a person to a psychiatric hospital), and Chase was sent to a hospital.
From there, Chase was transferred to Brook Run, an institution for people with mental retardation. At Brook Run, Lori was told they had neither a place nor a program for a child and could not guarantee his safety.
The first time Chase was sent to Brook Run, Lori did not leave him. The second time, she says she left him for the 48 hours the 10-13 required. At the end of the 48 hours, a man from Brook Run called Lori and told her to come get Chase. The Brook Run representative said he would call the Department of Family and Children’s Services (DFCS) if Lori did not come for Chase.
Again, Lori felt that she was at a dead end where no one would help since DFCS had instructed her to take Chase to Brook Run.
“People didn’t want to take time or initiative to try and help him,” Lori says. In February of 1993, Chase was transferred to River’s Crossing, 93 miles away from his home and family.
“Everyone was so nice at River’s Crossing, but it was an institution… a lot like a jail,” Lori says. “I couldn’t stand going upstairs. The long hard floors, the cement walls; there was nothing homey about it…a very sad place,” she adds.
Lori drove to Athens to visit Chase at least every weekend. But they avoided spending time in Chase’s room. “The rooms were empty, except for the bed and maybe a dresser,” Lori says. She brought Chase toys, but they always disappeared.
Lori remembers the joy in Chase’s eyes when she arrived for visits. She also remembers the look on his face when she left, and that she cried as she drove away from River’s Crossing. She could never dismiss the feeling that she had abandoned her son. She carried guilt with her every day and prayed that Chase did not feel unloved and abandoned.
Inside River’s Crossing, Chase’s potty training stopped. He lived on an all-girl floor (“because he was smaller”, Lori says). This was not what Lori and her family wanted for Chase’s childhood, but it was the only support they could get from the state. Chase stayed at River’s Crossing, and Lori continued advocating for a better way.
Lori learned of community-living practices in some northern states. She researched, wrote letters, talked to the press, and made numerous phone calls. Lori went to New Hampshire with employees of the Department of Community Health to examine community placements from a recently closed facility. Lori knew a similar placement could work for Chase. She just had to find the support outside of the institution.
Lori wanted the money that was going to River’s Crossing for Chase to follow him into the community. The numbers were in Lori’s favor. She knew it would cost $75 less per day for Chase to live in the community than in River’s Crossing — a difference of $27,000 a year.
At the time, in 1995, it was not possible for Chase to live with his family and receive support from the state. Determined not to give up, Lori decided that if the state would not provide support to Chase in their home, they’d just do the next best thing, and get Chase his own home in the community.
That’s just what they did. Chase left River’s Crossing on November 15, 1995, and moved into his own home located 17 miles from his family.
“The staff from River’s Crossing was very helpful in making the transition,” she says. Chase visited his new place several times before moving, and his new staff was educated on his likes, dislikes, and treatments.
Chase’s home was located at the end of a quiet street with a fenced-in backyard. The house was modified to fit Chase’s needs. He received full time support and began interacting with others in the community.
His family was close enough to visit often, and Lori usually tucked Chase in bed at night. She says she lay down with him in his bed, until he nudged her, indicating that he was ready for her to leave. Chase was comfortable and happy in his home.
Chase’s behavior and health improved, after his family and provider found caregivers to whom Chase could relate. Chase began going on outings and traveled with his family and caregivers.
On July 15, 2001, when Chase was 15 years old, he died in a car accident. The loss was very hard on his family and his community. Lori says she is grateful that Chase had the opportunity to develop a life outside of the institution for the last six years of his life.
Chase was nine years old when he moved out of River’s Crossing. He had spent almost three years there. While his mother knows the staff did their best, she wishes he had never lived in an institution.
She hopes there are better options for families now. “I tried everything and saw that he was falling through the cracks, and I would not let that happen,” she says. Her advice to other parents: “I would tell them not to give up. There is something or somebody out there they can get help from.” When somebody says no, advises Lori, go above that person. That was how she helped Chase leave the institution.
As for the 150 children still living in institutions and nursing homes, Lori believes that they should have the opportunity, as Chase did, to live in a home in the community. “One hundred and fifty is not that many when it comes to getting them out,” Lori says. “One hundred and fifty waivers doesn’t seem ridiculous.”
Not to this courageous mother who found a way out.
Dedicated to the memory of Chase Barrett, April 1986 – July 2001