Despite Tragedy And A Fight To Live On Her Own, She Smiled

We recently provided an update to our Home Or Nursing Home series, an NPR News Investigation about how a new civil right was created to give people a right to get their long-term care at home, instead of in state institutions and nursing homes.

Rosa Hendrix, an 88-year-old woman who has been fighting to become independent again, finally moved out of a nursing home and into her own apartment last month.

But now, we've learned some sad news about another nursing-home resident we wrote about last December who was also fighting to live on her own.

Bylon Alexander, 24, dreamed of leaving the nursing home she was living in, and it looked like that was about to happen. But this past weekend she died.

Like many Americans with severe disabilities, Alexander — who had a stroke when she was 6 years old — depended upon family for care. For years, her mother took care of her at home. But several years ago, when Alexander's mother was hospitalized, she was sent to live in a nursing home in Athens, Georgia. It was supposed to be a short stay until her mother got better, but unexpectedly her mother died.

We reported Alexander's story after meeting her at a conference. Despite her shyness, she got up the courage to tell a crowd of strangers about what happened.

"I don't have anyone to take care of me," she said. "So I think I'm stuck where I'm at."

After speaking out, a group of friends and advocates worked together to try to get her out of the nursing home. "She didn't like it. She didn't have anyone her age to interact with. There weren't really any activities designed for 24-year-olds," explained Katie Chandler, who works for a disability legal group, the Georgia Advocacy Office.

Federal nursing home data shows that there are more than 6,000 young people up to the age of 21 living in American nursing homes. And there are thousands more who are in their early 20s.

"She had talked about once she got out, going back to school, getting involved in her community and even possibly having a job," says Chandler, who helped start the Children's Freedom Initiative, a program to get children and young adults out of nursing homes.

Pat Tanner, the administrator at Heritage Healthcare of Athens where Alexander lived, says Alexander received good care there, described her as happy and says that the staff treated her like "a kid sister."

Last winter, the state of Georgia gave approval for Alexander to move into a group home or her own apartment with an aide to provide care.

But in January, Alexander got pneumonia. She had trouble swallowing. There was surgery to insert a feeding tube, but that area got infected. Two weeks ago, doctors operated to replace the feeding tube, but the infection had spread too far.

Two days before Alexander died, Chandler visited her in the hospital.

Even when Alexander was on a breathing tube and could no longer speak words, she still laughed. She liked to tell jokes and laugh at funny stories told by friends.

"And even with being intubated she was laughing, which seemed painful being intubated," says Chandler. "I think it was part of her spirit. I think it was who she always was."

Update at 10:40 a.m. ET., July 20: Our All Things Considered version of this report is online (transcript here, and audio here).