STEVE INSKEEP, host:
When you think of nursing homes, it's natural that you would think of elderly people weakened by age. But NPR's investigative unit analyzed federal data on nursing home residents and found there's a broad age group moving into them in increasing numbers. We are not talking about the elderly here. NPR's Joseph Shapiro explains, in a story that is part of our series this month, examining who lives in nursing homes.
JOSEPH SHAPIRO: This is how Michelle Fridley became a quadriplegic
Ms. MICHELLE FRIDLEY: I was 23-years-old and nine months pregnant. And on my home, actually, to decorate for my baby shower...
SHAPIRO: She was driving on s rural road in upstate New York, in Amish country.
Ms. FRIDLEY: Yeah, I came up on this blind hill and there was a horse and buggy crossing in front of me. And I swerved to miss the horse and hit a pole.
SHAPIRO: Nine days later, her daughter Felicia was born. That was ten years ago. Even since, Michelle Fridley has fought to stay out of a nursing home. This spring Michelle and Felicia came to Washington, D.C., but not as tourists.
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Crowd (Protesters): (Chanting) Down with nursing homes, up with attendant care.
SHAPIRO: They're here to protest.
Crowd (Protesters): (Chanting) ...up with attendant care. Down with nursing homes, up with attendant care.
SHAPIRO: Michelle and Felicia are with a group called ADAPT. It wants Washington to make it mandatory that states pay for people with disabilities, young and old, to live in their own homes. That means paying for in-home attendants. Outside the U.S. Capitol, last spring, Felicia, at the time nine-years-old was standing up, holding on, and riding the back of her mother's power wheelchair.
Ms. FRIDLEY: What happens if they cut our attendants? Why don't you tell him what's going to happen?
Ms. FELICIA FRIDLEY: If they cut our attendants, my mom will have to go into a nursing home and then I won't be able to see her, barely any time.
SHAPIRO: Michelle Fridley and her daughter live in their own apartment, but only because a New York state program pays for Michelle's personal care attendants. They help Michelle get out of bed, bathe, and dress. They help her cook and they drive her where she needs to go. Since her injury 10 years ago, there have been three times when Michelle says she almost went into a nursing home.
One came earlier this year when officials of New York proposed cutting the attendant care program. After Fridley and others protested, the decision was reversed, for now. Michelle says if her attendant care does get cut, she'll have no choice but to go into a nursing home, even though that means she'd give up raising Felicia
Ms. FELICIA FRIDLEY: It would mean that I would have to move to my grandma's or a relative. And she probably wouldn't be able to live as much as long as she would with attendant care.
Ms. FRIDLEY: Absolutely. People that go in a nursing home get depressed and definitely, I believe that my life wouldn't be as long in a nursing home, due to that.
SHAPIRO: Michelle Fridley is 33 now. NPR studied federal nursing home data and found that, over the past decade, elderly people are making up a slightly smaller percentage of who lives in a nursing home. There's only one age group that's seen it's numbers rise, people 31 to 64.
NPR's analysis found these working age people now make up more than 14 percent of the nursing home population.
Ms. JANICE ZALEN (American Health Care Association): Really? We'll have to look into that because I am not aware of that.
SHAPIRO: Our numbers surprised Janice Zalen with the American Health Care Association, that's the trade group of the for-profit nursing home industry. Zalen knows that people who live long term in a nursing home now, are poorer and sicker than in the past. For them, she says there's often an advantage. In a nursing home, unlike home-based care, you don't have to pull together all kinds of services.
Ms. ZALEN: It's automatic. It's just there. You have - your physician is there, the nurses are there, the nurse aids are there, the dietitians are there. Everybody that needs to be there is there.
SHAPIRO: Our finding about young people in nursing homes didn't surprise Nancy Miller at the University of Maryland Baltimore County. She's studied those young people who go into nursing homes.
Ms. NANCY MILLER (University of Maryland Baltimore County): They were much more likely, relative to their older counterparts, to have a diagnosis of diabetes and renal failure; and then I also found that a substantial share came in with a mental health problem...
SHAPIRO: Most 31 to 64 year olds in nursing homes have some of chronic medical condition. One reason they end up there, there's a shortage of state funded care to keep them living in their own homes.
Also, by federal law, people who face going into a nursing home must be told about alternatives. But in Miller's study in one state, nearly 30 percent of younger people in nursing homes said they weren't told about options. Often doctors and other health care providers just don't know what's available and recommend a nursing home instead. Or, they think it's too hard to use those state programs to set up care at home. It won't be easy for Edith Gordon to leave her nursing home.
Ms. EDITH GORDON: But I want to. I want to live on my own. I'm 49 years old, be 50 next month, and I want to be on my own.
SHAPIRO: Gordon ended up in this nursing home outside Atlanta when she fell a year ago and broke her knee. To get out, she needs an affordable apartment where she can get around in the wheelchair she's using now. Those apartments are in short supply, and Gordon says she needs an aid to make sure she takes the medications that control her bipolar disorder. Pat McMurry runs this nursing home. She's not surprised by the rising number of working age people going into the nursing homes.
Ms. PAT MCMURRY (Nursing home director): I've been in this business for almost 50 years now, and traditionally nursing homes where the little old men and the little old ladies that either outlive their relatives or had some kind of a fall or a fracture. Now we're seeing a transition to a younger population, either for psychiatric issues, which once upon a time were addressed in psychiatric state hospitals, which a lot of those have closed. So this is really the only means available that are financially reimbursed.
SHAPIRO: It's those state and federal reimbursements that drive who lives where. Over the last several years, federal laws and policies have established that people have a civil right to get their long term care at home. Home-based care is usually cheaper too. But federal law requires states to pay for nursing homes. Attendant care programs are optional. So as states face record budget gaps, the programs that help people live at home get cut.
Michelle Fridley, the quadriplegic woman raising her daughter in New York, says that after her accident, she couldn't imagine the life she's leading now.
Ms. FRIDLEY: I've never been happier. I have never been happier, and I'll say that again. I've never been healthier. I've never been more excited. I'm living my life to the fullest.
SHAPIRO: She's raising Felicia, she volunteers at her daughter's school. She helps with the chess club. She's getting a degree in health care management through an online university. And this year, she was named Ms. Wheelchair of New York.
But she says, if she losing funding for the attendants who let her live in her own home, then she'll likely join the growing number of working age adults who are going into nursing homes.
Joseph Shapiro, NPR News.
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INSKEEP: And we'll continue our reporting tonight on All Things Considered, when we look at another surprising group in nursing homes, children and young adults. You can see photographs and more on our series at npr.org.
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INSKEEP: This is NPR News.