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Picture a nursing, any nursing home. Of all the things that came to mind, you probably did not imagine a child among the patients.
But NPR's Investigative Unit analyzed federal data and found that children, teens and young adults make up a surprising share of nursing home residents.
NPR's Joseph Shapiro reports now on one group in Georgia, trying to help these young Americans get the care they need at home or somewhere more like it.
JOSEPH SHAPIRO: In a hotel ballroom outside Atlanta, a young man glides his wheelchair to the front of the meeting room.
(Soundbite of applause)
SHAPIRO: With his twisted hand, he hits a button on a small gray box attached to the front of his wheelchair.
Mr. MATHEW HARP: I am Mathew Harp and I am 22 years old.
SHAPIRO: Matthew harp can't speak.
Mr. HARP: I have a muscle disorder that affects my whole body.
SHAPIRO: So he types his speech into the machine that speaks for him.
Mr. HARP: And when I was 21 years old, I had to move into a nursing home because my mother and my sisters could not take care of me by themselves any longer.
SHAPIRO: More than 6,000 children and young adults up to the age of 21 living in American nursing homes.
Mr. HARP: I was the youngest person in the nursing home. Most of the others were very old. I had only a few friends that would come and see me. I missed everyone very much and I wanted to leave.
SHAPIRO: After a year in that nursing home, Matthew Harp got his wish and this past March, he moved back into his mother's home, thanks to a state and federal program paid for the aides who come to his house nine hours every day.
In the audience tonight, there are parents of other disabled children and young adults who are now living in nursing homes. And there's also a 23-year-old woman in a wheelchair whos come from the nursing home where she lives.
Ms. BYLON ALEXANDER: My name is Bylon Alexander.
SHAPIRO: Bylon Alexander is so shy she's barely spoken to anyone tonight. But after hearing Matthew Harp, she wants to tell her story to this room full of strangers.
When Bylon was just six years old, she had a stroke. Her mother cared for her at home - lifting her, bathing her and getting her disabled daughter ready for school. Then Bylon's mother got sick and was hospitalized. So Bylon, at the age of 22, went into a nursing home. She expected it would be a short-term stay until her mother got better.
Ms. ALEXANDER: Just recently, my mom died.
SHAPIRO: The day of the funeral, aides at the nursing home got Bylon dressed up, but the van that was supposed to take her never showed up. Bylon missed her mother's funeral. Now, Bylon worries she's in the nursing home to stay.
Ms. ALEXANDER: I don't have anyone to take care of me. So I think I'm stuck where I'm at.
SHAPIRO: But Bylon doesnt want to be stuck where she's at.
Many of the one and a half million people who live in a nursing home say thats where they feel they get the best care. And even for people like Bylon, who want the choice to leave, it was the nursing home that was the solution when there was no other place to go.
Still, just hearing Matthew Harp tonight has made Bylon dream out loud. She talks about what she wants to do.
Ms. ALEXANDER: Go back to school and get my diploma.
Unidentified Woman #1: Mm-hmm, thats great.
Ms. ALEXANDER: And go to college.
SHAPIRO: But right now, she has no idea how that could be possible.
(Soundbite of ignition)
SHAPIRO: It's the next morning. The group is going on a tour to see alternatives to living in a nursing home. Matthew Harp gets into one van, Bylon Alexander, too.
Katie Chandler put together today's van tour. She works for a disability legal group called the Georgia Advocacy Office. She helped start something called the Children's Freedom Initiative.
Chandler tracked down more than 80 children and young adults from Georgia who live in state hospitals and nursing homes. She invited some of their parents here today.
Ms. KATIE CHANDLER (Lead Contact, Children's Freedom Initiative, Georgia Advocacy Office): What you get in a nursing facility is not 24-hour nursing care. You may see a nurse 15 minutes - an actual nurse, 15 minutes a day. And so what you're really getting is CNA care. The Certified Nursing Assistant, they help you with your physical needs.
SHAPIRO: Today's tour will show these parents places outside of nursing homes where aides provide that help with bathing, eating, and getting in and out of a wheelchair.
Unidentified Woman #2: And thats power room in there.
SHAPIRO: Their first stop is at a group home. Two men with intellectual disabilities live here.
Bylon Alexander's impressed that each man has his own large bedroom and a private bathroom. They have a computer, too.
Ms. CHANDLER: What do you think of the room and the house? What do you think about it?
Ms. ALEXANDER: I like it.
SHAPIRO: There's dispute among policymakers about the cost of moving people into their own homes. Multiple studies say it's cheaper, that the amount spent on one person in a nursing home can pay for three people to live at home. But first, states need to spend to set up those community-based programs.
In October, the State of Georgia settled a lawsuit with the U.S. Department of Justice and agreed to spend $77 million to create programs to help people with mental illness and intellectual disabilities leave state institutions.
Back in the van, the mothers talk about common experiences - husbands who leave when the disabled child is born, their guilt over sending a child to a nursing home. And then there are the tales of poor care and sometimes even abuse.
Unidentified Woman #3: He has a hospital gown on. His hair is greasy, it hasnt bee washed in at least a week. And his teeth are just crusted over. He wouldnt have crusties if it had just been a day.
Unidentified Woman #4: Right.
SHAPIRO: If you're wondering how a child ends up in a nursing home. The parents explained why: They had no other choice.
For Nola Sayne it happened 13 years ago. Her son Zach was just 10 when he had a feeding tube inserted into his stomach. His after-school program kicked him out because staff refused to do the feedings, even though it was simple. No other after-school program would take Zach. He can't talk. He has cerebral palsy. He has seizures. He's partly blind.
Nola put a want ad in the paper. One older woman said she'd take Zach into her home day care. But it didn't last.
Ms. NOLA SAYNE: She kept him for about a week and then called me one day in tears and said, come and get him. And I came and got him and he was sitting out on her porch in his little seat, his little carrier, and his bag was sitting next to him.
She was in the house. She opened up the door when I came and said, I'm sorry, and she was in tears. And then she slammed the door. And I didn't know what to do.
SHAPIRO: Sayne thought about quitting her job as a paralegal, but she was a single mother then with two kids. She needed her salary and she needed the health insurance for Zach. The state of Georgia would pay nothing if Zach lived at home. But it offered to pay the full cost of a nursing home.
When no place else could take Nola Sayne's severely disabled son, the nursing home did.
Ms. SAYNE: Made a decision to put him in and we did. And it was really hard -very, very depressing.
SHAPIRO: She drove her 10-year-old son to the nursing home and left him there.
Ms. SAYNE: Oh, I cried for about three months straight, I think. It was just -sorry.
(Soundbite of crying)
Ms. SAYNE: I went on anti-depressants. I was drinking a lot. My other son, he felt bad because he felt like he didnt do enough.
SHAPIRO: The closest nursing home that would take Zach was in another state, in Montgomery, Alabama, a 400-mile roundtrip. For the last 13 years, Nola Sayne has made that drive every two or three weeks. Now, she wants her medically fragile son to live closer to her, near Atlanta.
Ms. SAYNE: If he is sick, I'll be able to be there quickly. I won't have to worry about will I make it in time. Because with him, you know, he's had pneumonia so many times, and he could take a turn for the worse very quickly. And I've always worried about being able to get to him. I don't want him to die without me, just to be blunt about it.
SHAPIRO: The last stop today is to whats called a Host Home. It's a pretty, suburban brick house on a lake. The woman who owns this home is nurse. She quit her job at the hospital and now gets paid to take care of the four disabled girls who live here 24 hours a day.
(Soundbite of conversations)
SHAPIRO: Tonight, one of the girls is going to her high school prom. In her large bedroom, two dresses: One pink, the other blue, hang from the canopy bed.
Ms. SAYNE: So these are her prom dresses?
Unidentified Woman #5: Yes.
Ms. SAYNE: Which one is she wearing?
Unidentified Woman #5: Shes always wearing something frilly. And I kind of wanted her to wear something a little more grown-up.
SHAPIRO: Now for the first time, Nola Sayne can imagine a place other than a nursing home where her severely disabled son can get that complex medical care he needs.
Ms. SAYNE: I couldnt comprehend, well, why would anybody do that. And...
(Soundbite of laughter)
Ms. SAYNE: ...I couldnt understand that. I mean, Im his mother and it's hard for me to contemplate changing my life that much to bring him back home at this point. But, you know, now that I've actually seen that people actually do that...
(Soundbite of laughter)
Ms. SAYNE: ...it does - it gives me a lot of hope, actually. Im excited.
SHAPIRO: The tour is over, but leaving a nursing home isn't easy. Nola Sayne is fighting to get her son approved to leave Alabama and accepted back onto Georgia's Medicaid program. Bylon Alexander was approved for a Georgia state program to move out of her nursing home, but now she's on a waiting list thousands of people long.
Joseph Shapiro, NPR News.
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