It was a pretty bad day. The snow and ice storm had trapped my husband, son and me in our house for four days and four nights. On the third afternoon, my husband and I finally begin to chop, dig and shovel the thick slabs of concrete ice stuck to our hilly driveway. Exhausted, I came back into the house, to discover our son, who is a college freshman, had failed to do some simple tasks that he had promised. Even though he has a disability and medical complications, he still has responsibilities he can perform. We got into such a fierce shouting match that his canine assistance dog, who never leaves his side, quietly snuck out of the room and hid down the hall.
Yesterday, if someone had magically shown up on our doorstep and offered to take him away to a nursing facility, I probably would have said, “Fine, just take him.” He probably would have been happy to escape. I had snapped because all of my supports and resources are snow or ice bound. No one was moving in the streets of Atlanta. At the same time I was feeling stressed, I got an e-mail about yet another death at a nursing facility on the North Side of Chicago. It’s been revealed that a 14-month old baby died from an infection caught at Alden North. That brings the total to fourteen children who have died since the Illinois nursing home opened in 2000. I quickly regretted my dark thoughts.
Ted McCannon sent me the e-mail. Last week in Chicago, we interviewed Ted, his wife Susan, and 18-year-old granddaughter Kasey for “Not Home.” They have had guardianship of Kasey since she was a baby. Kasey has a degenerative genetic disorder, and could walk and talk like any other child, until her symptoms began to appear when she was about five.
When she was 15, Kasey got very sick and had to be in the hospital for over a month. Then Kasey was transferred to Alden Village a ICF/DD (Intermittent Care Facility for Developmentally Disabled). Ted and Susan visited Kasey at Alden Village every day and were concerned that they were not giving her the best care. It was a bright, shiny facility. The staff seemed upbeat and promised that they could care for Kasey perhaps better than Ted and Susan. Every day Ted and Susan would make the 120 mile trip to visit Kasey. She had been able to use the toilet before entering Alden Village, but it took extra time. While at Alden Village, the aides slapped diapers on Kasey. Susan and Ted said she was not changed often. One time her diaper was so heavy that it fell off as she walked down the hall. Kasey was not changed in the bathroom, but on her bed. The homemade quilt that Susan had put on Kasey’s bed began to smell and had to be washed because of the feces on it.
Kasey could also eat solid food before entering Alden, but needed someone to sit with her and help feed her. While at Alden, the staff chose to use Kasey’s feeding tube, instead of giving her the time needed to dine. Kasey also quit speaking at Alden Village. One weekend when Kasey was home, Ted and Susan were discussing when to take her back. In an amazing moment, Kasey spoke and said “stay the night”. They never took her back. Today, she is eating solid food and using the bathroom. Her grandparents find great joy in keeping their family together, and giving her the best that they can for whatever time Kasey has left on this earth. Susan and Ted are relieved that they made this choice, and angry that the state of Illinois does not shut down facilities where the care is uncertain and children die.
“It costs three times as much to keep a child in one of these facilities than to keep them in their own home.” Ted McCannon said. “Yet our state will not help pay to keep them at home. Something is wrong with the system.”
Even though I felt trapped and exasperated, the grim news about the nursing home in Chicago snapped me back to reality. Illinois is part of a nationwide problem. Parents like me can easily feel overwhelmed and believe they have no option but to place a child in a nursing facility. Sometimes, like the McCannons, there is hope that a facility can do a better job than the care being given at home. Statistics show that never really happens. Children with disabilities, perhaps more than any other group, need the love and quality care that comes at home. When these children grow up to be young adults, they want to choose where they live…in apartments, houses, or college dorms.
Our son has chosen to live on campus, and shutdown of his university for six days was a tough adjustment for everyone. We both apologized for our shouting match and pledged never to do it again. For the snowbound “holiday,” I was truly relieved that we were all safe at home. Now, if only the city of Atlanta and state of Georgia can do a better job to clear its roads of ice and snow.