There’s one age group that’s going into nursing homes at a higher rate. And it’s not the elderly.

Young people ages 31 to 64 now make up 14 percent of the nursing home population, an analysis of federal data from the Department of Health and Human Services by NPR’s Investigative Unit found. That’s up from 10 percent just 10 years ago.

The data do not show why this age group is entering nursing homes in such higher numbers, but Michelle Fridley’s fight to stay out of a nursing home may provide a clue.

Ten years ago, Fridley was nine months pregnant and 23 when, driving on a rural road in upstate New York’s Amish country, she came over a blind hill and swerved to miss a horse and buggy. Her car hit a tree; she was left a quadriplegic.

At the time, Fridley was driving home to decorate for her baby shower. Her daughter, Felicia, was born nine days later. Ever since, Fridley, who is now 33, has fought to stay out of a nursing facility and continue living in her own home.

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Fridley and her daughter now live in their own apartment – but only because a New York state program pays for Fridley’s personal care attendants.

“Attendants are my arms and legs. I wouldn’t be able to do anything without my attendants. They help me to get bathed in the morning. They get me dressed. They attend to my, both my, you know, urinary and bowels; my personal needs. They help me to cook. They drive me from doctors’ appointments to wherever I need to go, and I like to get out,” Fridley said.

Since her injury, there have been three times when she almost went into a nursing home. One came earlier this year when officials in New York proposed cutting the attendant care program. After Fridley and others protested – and she told her story to New York Gov. David Paterson – the decision was reversed. However, more state cuts are expected next year.

According to a study by the AARP Public Policy Institute, the cost of attendant care is about a third the cost of providing care in a nursing home or institution. But there’s an upfront cost to states to hire the case managers and aides, find the housing, and pay for other things that make this home-based care work. And states worry that more people – who now depend upon family to provide the care to keep them out of nursing homes – will start demanding this care at home.

So as states face record budget gaps, the programs that help people live at home are cut.

Nancy Miller, at the University of Maryland, Baltimore County, thinks that may be one reason the percentage of 31- to 64-year-olds is growing in nursing homes. Miller, an associate professor in the school’s department of public policy, has been studying why young people enter nursing homes and published several reports documenting these data. She has found that it’s also this same group going into nursing homes at higher rates. It’s a trend she has found in almost every state over the past 10 years.

Michelle Fridley helps her daughter, Felicia, get dressed up to go to a Halloween party. (John Poole/NPR)

Miller says that shows states lack programs to help these people receive care at home. And when such support exists, it’s hard to find.

Pat McMurry, who runs a nursing home outside Atlanta, agrees that it’s the availability and funding of state programs that has caused the growth of working-age people in nursing homes.

“I’ve been in this business for almost 50 years now,” McMurry said. “And traditionally, nursing homes were the little old men or the little old ladies that either outlived 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.”

Fighting ‘Institutional Bias’

Over the past 20 years, federal laws and policies have established a civil right to get long-term care at home. But NPR’s investigation found that is .

More than 60 percent of what states spend on long-term care for the elderly and disabled goes to pay for people – like Michelle Fridley – to live in a nursing home. The amount spent on home-based care has grown steadily, but not nearly enough to meet the need. Nationwide, there are some 400,000 people on state waiting lists for home-based care, double the number 10 years ago.

At a protest in Washington last spring organized by , a disability civil rights group, Fridley and her daughter, then 9 years old, participated. The group wants Congress to make it mandatory that states pay for people with disabilities – young and old – to live in their own homes. That means expanding state programs that pay for in-home attendants.

The protesters blocked federal office buildings and ones that house groups representing state lobbyists and the private nursing home industry. On the back of Fridley’s power wheelchair, a hand-lettered sign said: “I’d Rather Go To Jail, Than Die In a Nursing Home.”

She had also stuck a round sticker on her coat that said “Defending Our Freedom.” That freedom is the . It was established by a 1999 Supreme Court decision in what’s known as the Olmstead case. The court cited the Americans with Disabilities Act, the sweeping anti-discrimination law that is mostly thought of as something that puts wheelchair ramps on buildings and tells employers they can’t discriminate in hiring decisions against the disabled.

But the Supreme Court justices said the provisions of the ADA also make the unnecessary institutionalization of people with disabilities a form of discrimination.

Since then, federal policies have said states need to do more to meet the obligation that resulted to create more community-based care. The recent health care overhaul has several provisions to create financial incentives for states to expand these attendant-care programs.

But there is a contradiction in federal law. Policymakers call it the “institutional bias.” Federal law requires states to pay for nursing homes, while community-based care is optional.

Fridley and the other members of ADAPT demanded that lawmakers pass the Community Choice Act, which would end the “institutional bias” in Medicaid and make it mandatory for states to pay for home-based care, just like it is a requirement to pay for nursing home care now.

A pilot program was included in the recent health care overhaul, but it’s voluntary for states. The larger bill has languished in Congress. One reason: The Congressional Budget Office estimates it would cost $5 billion a year. Some academic studies have said much of that money would be offset by the cost savings of caring for people at home.

Janice Zalen, with the American Health Care Association, the largest association of long-term care providers, says that nursing homes play an important role filling a gap for people who don’t have other choices or who can’t easily put together in-home services.

She also notes that who lives long-term in nursing homes is changing.

One reason is the rise in assisted living, a more homelike alternative. Residents get their own, private apartment, but there are nurses and aides to help, too. Nearly 1 million Americans reside in assisted living; more than 1.5 million live in nursing homes.

Zalen says people who are less disabled – and who can afford to pay for expensive assisted living – are leaving nursing homes. The people who stay in nursing homes are poorer and sicker.

“If you go into assisted living, you’ll often see people that used to be in nursing facilities. And what they say about the nursing-level people, they used to be in hospitals,” she said.

And for people who are poorer and sicker, there’s a big advantage to being in a nursing home: You don’t have to pull together all kinds of services. All the care is under one roof.

“It’s automatic, it’s just there,” Zalen said. “You have your physician … there. The nurses are there; the nurse aides are there; the dietitians are there. Everybody that needs to be there is there.”

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.

Moving From Family Care To Independence

Those who don’t go into a nursing home often rely on care from family members – who provide it at no charge to the state, but at a cost that can be their health, time and stress.

That’s what happened to Michelle Fridley’s mother, who cared for Michelle and Felicia for several years after the accident.

The first time Fridley almost went into a nursing home was right after her accident. She said discharge planners at the rehab hospital waited for a moment when her mother wasn’t around.

“I was pulled into a meeting at the hospital,” Fridley recalls. “And they recommended that I not put the burden on my family: ‘Think of what you’re doing to your mom.’ And they recommended that I go in the nursing home. I said, ‘Oh, if my mom hears this she’s going to hit the roof.’ She was working so hard so I didn’t go into a nursing home.”

Fridley’s mother, Pat Plyter, moved to a house that could be made wheelchair accessible. When Fridley finished her rehabilitation at the hospital, she and her daughter moved in with Plyter.

Plyter found herself waking up at night to care for both her adult daughter and for her newborn grandchild. A state program paid for attendants, but mostly just three hours a day. Fridley’s two nieces also helped.

“When she was in her accident, I just prayed to God to give me the strength to do it,” said Plyter. “It was extremely hard. I cried a lot.”

Fridley needs someone to turn her body in bed when she’s in pain. So her mother stayed up all night, and then went to her job – as a hospital nurse – in the morning. The late hours took a toll on Plyter, mother and daughter agree. And in recent years, as Fridley needed more help, while her mother got less sleep.

The constant caregiving created friction in the household: Plyter noted there was relief for her daughter, but not much for her.

“She would have a lady come in during the day and give her a shower, a pedicure and a manicure and put her makeup on,” Plyter says. “I couldn’t even do that and she’d sleep during the day and I didn’t have sleep.”

“It was to the point where she wasn’t even showering,” says Fridley. “And it was because she really didn’t have time. I was really depressed and I really hated what I was doing to my mom.”

Fridley worried, too, that as Felicia got older, she would feel forced to take on more of the care. So a little over a year ago, Fridley made a desperate decision: It was time to go into a nursing home.

But after discovering the Center for Disability Rights, a disability advocacy group in Rochester, she was able to move to a new apartment. The group, along with her local state senator, helped her move to a nearby county, where she could receive funding to live independently.

The money paid for a small apartment where she now lives with Felicia, and attendants who are there 20 hours a day. She even hired her two young nieces, who used to do a lot of the work free.

Fridley says this has been the difference between going into a nursing home and living what she considers a normal life. She’s raising her daughter, she volunteers at Felicia’s school and she’s getting a degree in health care management through an online university. She works as a volunteer advocate at the disability group that helped her. And this year she was named Miss Wheelchair New York.

“I’ve never been happier,” Fridley says. “I have never been healthier. 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.”

She has also become a volunteer advocate, working at the disability center that helped her. Earlier this year, when the state of New York proposed cuts in the hours of attendant care that people like Fridley could get, she was one of a group that went to the state capitol and met with Paterson. Fridley told him her story of trying to stay out of the nursing home. The program was saved.

But more cuts are expected next year. So Fridley keeps up her advocacy. Because, if the cuts go through next time, Fridley fears she’ll be forced to leave behind her normal life – and give up Felicia – joining the growing number of working age adults who are going into nursing homes.

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In October, Thomas Perez, assistant attorney general for civil rights at the U.S. Department of Justice, noted the girl’s death in a state mental hospital moments before he announced the settlement of a sweeping lawsuit with the state of Georgia. State officials agreed to spend $77 million over the next two years to move several hundred, and possibly a few thousand, people from state hospitals, like the one Crider died in near Atlanta.

“This settlement is too little to late for her [family],” Perez said. “But it will help so many others like her living in institutions.”

Crider, a seventh-grader, died in 2006 at Georgia Regional Hospital in Atlanta, a state hospital for people with mental illness, after she was prescribed multiple medications, many of which, as a side effect, caused constipation. Crider died from a severe intestinal blockage that went undiagnosed and untreated by the institution’s doctors and staff.

“This was an absolutely tragic and preventable death,” said Perez. “She didn’t need to be in that institution. She could have thrived as an outpatient.”

Crider was one of 115 state hospital patients who died under questionable circumstances, as documented in a series of stories by the Atlanta Journal-Constitution.

The Bush administration’s Justice Department then put pressure on Georgia to improve conditions. And in the last days of the Bush administration, the Justice Department announced court settlements in Georgia and five other states to improve mental hospitals. The Justice Department intervened under a statute known as CRIPA – the Civil Rights of Institutionalized Persons Act – which gives the department authority to sue states to improve care in state hospitals, nursing homes, prisons and jails.

But advocates for people with disabilities said the settlements let the states off easy, since they did not force them to create alternatives to those state institutions. And, these groups noted, there was now civil rights law that required states to spend more money on alternatives. In 1999, the U.S. Supreme Court had ruled in Olmstead v. L.C. that it was a form of discrimination to put people in institutions if they could live, with some support, in their own homes. The justices noted that the Americans with Disabilities Act – a law commonly thought of as requiring wheelchair ramps and banning discrimination in hiring – also gave people with disabilities the right to live in the least segregated settings.

The court case involved two women who had lived in the same Georgia institution where Crider later died. But since the Supreme Court ruling, there had been little movement by federal agencies to get states – including Georgia – to live up to their obligations under the Olmstead ruling.

When Perez joined the Justice Department, he made enforcement of these Olmstead obligations a new priority for the Civil Rights Division. He calls it a “paradigm shift” for his division. In the past, “when the question was what do we do with people with disabilities who were warehoused in institutions, there was only one question that was asked: How can we insure that the institutions are safe?” Now, he says, the Justice Department is asking, “who is living in this facility who doesn’t need to be there and could reside and indeed thrive in a community-based setting?”

As a result, the department in the past two years has filed briefs or joined lawsuits in some 20 states, Puerto Rico and the District of Columbia. Among them:

— New York: A federal judge in March ruled that New York state must start moving more than 4,000 people with mental illness out of large “adult homes” and into their own apartments or small homes. Judge Nicholas Garaufis of Federal District Court in Brooklyn said New York must develop at least 1,500 units of housing – with supportive social services – each year over the next three years in New York City. The judge had ruled previously that the city’s “adult homes” – which despite the name are institutions with 100 beds or more – violated the ADA by leaving residents segregated and isolated and less likely to find jobs or interact with the friends and people in the community. The Department of Justice filed briefs in support of the plaintiff, Disability Advocates, a nonprofit disability legal services agency that first filed the lawsuit in 2003.

— Florida: The Justice Department filed a brief in support of a woman who had been living in her own home since an accident with a drunk driver left her a quadriplegic. Michele Haddad was on a waiting list for two years for state services and when her condition worsened. State officials said she could get care only if she first went into a nursing home for 60 days. The Justice Department argued, along with Haddad, that the state’s waiting list violated the ADA and the Olmstead decision. In June, the week of the 11th anniversary of Olmstead, a federal judge in Jacksonville ruled in Haddad’s favor.

— Illinois: In September, a federal judge gave final approval to a settlement between disability and civil rights groups with the state of Illinois to start creating community-based homes for some 4,300 people with mental illnesses currently living in large nursing homes. The Justice Department filed a “statement of interest” in that lawsuit, Williams v. Quinn, and took similar action in two similar Illinois cases. In Ligas v. Maram, the department agreed with disability groups suing the state to create more community-based housing for people with intellectual disabilities who now live in large nursing homes. And in Hampe v. Hamos, young people with severe disabilities are suing not to get cut off, when they turn 21, from generous state funding for nurses and other care that allows them to live in their own homes, instead of in nursing homes or hospitals.

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Olivia Welter turns 21 on Nov. 9. On her birthday, she will no longer be eligible for the program for disabled children that has kept her healthy. She will lose state funds that cover the expense of nurses like Helen Houchins who prepares liquid food that is sent directly into Welter’s stomach through a feeding tube. (John Poole/NPR)

You’ve probably never seen a person hooked up to so many plastic tubes as Olivia Welter. There’s a ventilator tube that keeps her breathing. There’s a feeding tube that’s also the tube for her dozen or so medicines. There are the tubes to the vibrating vest that loosens the mucus in her lungs. Another tube to help her cough. The tube that her nurse uses a couple times an hour to suction the mucus out of her mouth.

But if you think of being hooked up to machines as something that keeps a dying person alive, that’s not what’s going on here. Olivia Welter is not dying. These tubes and machines keep her healthy.

Olivia Welter is 20 years old and gets all this life-saving medical care through a program provided by Illinois’ Medicaid program. But it’s a program for children. And when Olivia Welter turns 21, at the stroke of midnight on Nov. 9, she is no longer eligible for that care.

“There’s not going to be any magic transformation between Nov. 8 and Nov. 9,” says the young woman’s mother, Tamara Welter. “She will be the same Olivia, with the same challenges and the same care needs.”

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There are about 600 children with severe disabilities in Illinois who get care through the same in-home program for children, and thousands in other states around the country.

She breathes with the help of the portable ventilator on the back of her wheelchair. She can’t speak; she can’t move. Her eyes are wide open – she can’t even close her eyelids. She has been severely disabled since birth.

John Welter says that when his daughter was a little girl, doctors told him to be ready for her to die.

“We were told very bluntly, and this was very hard to hear, that she would not live past 10 years of age, pure and simple,” John says. “They told us that very directly.”

‘You Do What You Have To Do For Your Child’

So what kept Olivia Welter alive – and healthy – all these years? Better medical technology, for one thing, and the attentive, loving and constant care that she has received at home. That comes from nurses – who work 16 hours a day and are doing some treatment for the girl every several minutes – and from her parents, who take over for the other 8 hours.

“This is intensive care, 24 hours a day,” says Helen Houchins, the day nurse, who sits by Olivia’s side in the family’s living room in a bungalow in Lincoln, Ill.

“You do what you have to do for your child,” says Tamara Welter. She says her daughter’s good health – and good nature – make the family’s sacrifice worthwhile.

“I’ve had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I’ve looked them in the eye and said, ‘Don’t you dare say that to me. Do you have children? What would you do for your child?’ I think society can look at a person like Olivia and say, ‘What can she contribute?'”

Nurse Helen Houchins moves Welter from her bed to a wheelchair. Welter needs 24-hour care and she breathes with the help of the portable ventilator on the back of her wheelchair. She can’t speak, can’t move and can’t even close her eyelids. (John Poole/NPR)

Tamara Welter blinks back tears and then talks about how her daughter responds when her parents or nurses walk into a room – by glancing at them with her eyes and flailing her arms. She sits with the family – and keeps her eyes toward the TV – as they watch video of her brother starring in community theater productions.

Her father says when no one else is in the house, he and Olivia turn up the country music.

“That’s our guilty pleasure,” he says. “And the more twangy the sound and the sillier the words, the more she loves it. And one day, we were listening to country music and some guy was leaving his girlfriend in his pick-up and I repeated the lyric and said, ‘Kiss my bumper goodbye baby,’ and she just erupted in giggles. And she thought that was the funniest thing.”

Those moments have become fewer in recent years, as Olivia’s seizures get worse.

Still, everyday, her parents tie her hair in one of her many, colorful bows – like the blue and orange one today that matches her clothes. They take her to church and to restaurants. Until last year, her nurses took her to school, although there was no way to tell what she was learning.

Cost Considerations

Olivia Welter is about as disabled as anyone you’ll ever meet. Yet she’s been hospitalized just twice in the last seven years and has had just one bedsore her entire life – and that was a dozen years ago.

Her doctor, Adalberto Torres, director of pediatric critical care at Children’s Hospital of Illinois in Peoria, says that’s the sign of exceptional care.

“They’ve kept her happy and healthy,” Torres says of the Welters. “And one thing you can see with Olivia is when she is sad or happy.”

When Olivia turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital. It’s a less expensive nursing home. The state will pay for the Welters to send her to one, although there are none nearby that would take her.

By keeping her out of the hospital and free of the health care complications common to quadriplegics, they save the state of Illinois from paying high medical bills.

Tamara and John Welter are immensely grateful for what Illinois has done in the past. It’s expensive to care for Olivia at home: nurses cost about $220,000 a year. Still, that’s less than half the cost of what the state counts as the alternative – having her live in a hospital. The Welters figure they’ve saved the state millions of dollars by keeping her at home.

But when she turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital – it’s a less expensive nursing home.

The state will pay for the Welters to send her to one, although there are none nearby that would take her.

And even if they sent her to a distant nursing home, John Welter doubts his daughter would get the close attention she needs to stay alive.

“We cannot bear the thought of having Olivia in a home or a care home,” he says. “Because we would be afraid that in any ten minutes, her life could be put in danger. Or less – in any three minutes. It would be agonizing, day to day to day.”

Families Providing Care ‘Like An Intensive Care Unit’

Torres, Olivia’s doctor, agrees that it is best for Olivia’s health for her to get the care she needs at home.

“These families do this in their home and they provide a level of care that is like an intensive care unit, not just live on a hospital floor, but an intensive care unit.”

So the Welters will say no to the nursing home and will keep Olivia at home. But the state won’t pay more than the cost of that nursing home. And that means the family will get about one half the state funding they rely upon now. They will no longer be able to pay for nurses.

They could hire less expensive personal care aides, instead. But here’s another catch: By Illinois law, aides can’t give Olivia her medicines. They also can’t do the emergency care, like quickly replacing the breathing tube that keeps her alive if it pops out.

“The only way I think I could have an aide,” says Tamara, “is if I am in the house with them, looking over their shoulder, and me doing most of the work.”

And that’s what state officials know that parents like the Welters end up doing – they become full-time caregivers and give that care at no cost to the state.

Welter’s mom, Tamara, reads to her in the family’s living room with her father John and brother Brian in Lincoln, Ill. Now, nurses care for Welter 16 hours a day. John and Tamara take over the other eight hours. If they lose the funding for Olivia’s care, the Welters will become her round-the-clock caregivers. (John Poole/NPR)

If the funding disappears, Tamara says she will quit her job as a cashier at the Cracker Barrel that she took to pay for her son’s college. John might need to quit teaching history at the nearby college, but that job gives the family health insurance that pays for other parts of Olivia’s care that the state doesn’t pick up, including a medicine she used a few years ago that cost $7,000 a month.

Suing The State For Coverage

So the Welters are suing the state to continue the care Olivia has received since she was little.

And they have some support from the U.S. Department of Justice.

“Where would you rather live as a 21-year-old?” asks Thomas Perez, the U.S. assistant attorney general for civil rights. “Would you rather stay in the community with your family and your neighbors and all of the benefits of neighborhood and community? Or would you want to go into a nursing home? I’d ask any American: What is that choice?”

Perez has told the state of Illinois that it is in violation of federal law when it cuts off children. This summer, the Department of Justice intervened in a lawsuit filed by another family whose disabled child turned 21 in June. Olivia Welter’s attorney added her to that lawsuit.

The Welters worried that at midnight, as Olivia turned 21, her nurses would be forced to walk out the door. But just over a week ago, the state of Illinois agreed to keep paying for Olivia’s nursing care, at least for a little while longer. It might be a few months – or several months – while the lawsuit makes its way through the courts.

“This is government at its worst,” says Robert Farley, the attorney for the Welters and several other families in Illinois. “Government says, ‘Well, we don’t do anything until the court rules,’ but this stuff is life and death.”

NPR asked to speak to an official from the Illinois Department of Healthcare and Family Services, but the agency declined, saying no one could comment because of the pending lawsuit by the Welters and other families.

States like Illinois are caught between wanting to do more for families and dealing with the reality of rising Medicaid costs.

“By the blessings of the advances of medical technology, we keep people alive who would have died in the past,” says Alan Weil, executive director of the National Academy for State Health Policy, a Washington-based think tank. “That technology is very expensive, and someone has to pay for it. In good times, we are expansive and we put more resources in these programs; when budgets are tighter, there’s concern about how much we’re willing to spend, even for the most needy, the most obviously deserving of assistance.”

State governments are dealing with record budget deficits – Illinois alone is facing a $15 billion shortfall. According to the Center on Budget and Policy Priorities, 46 states faced budget shortfalls this year and total state debt will hit $140 billion in the current fiscal year.

“States are in the worst fiscal situation ever,” says Weil. “Meanwhile, the Medicaid roles have been increasing due to the economic downturn. Medicaid’s a growing share of state budgets.”

Families Fight For Home Care Funding

Every year, about 20 of the 600 children with severe disabilities in Illinois who get in-home care through the program that supports Welter age out. Some go to nursing homes; other families struggle to keep their children at home but often get overwhelmed by the care. Last year, a quadriplegic man in Peoria died at home just a few months after he turned 21 with bedsores so severe that his flesh was open down to his bone.

A few families, like the Welters, get attorneys and sue the state. Sometimes they lose, but lately they’re more likely to win.

David Grooms, of Marseilles, Ill., won, but only after he sued the state when he got cut off when he turned 21 in 2005. His inherited metabolic disorder requires him to use a ventilator 24 hours a day.

His attorney, Karen Ward of Equip for Equality, a disability civil rights legal network, argued that it was medically dangerous to cut back on the level of nursing care that Grooms had relied upon all of his life and to instead use less skilled aides or to send him to a nursing home.

“The state says we do not deny care,” says Ward, “But what they offer is an unsafe level of care.” A court agreed and restored his 16 hours of skilled nursing care.

Grooms now lives in a large room at home with his father, also named David. The father provides care for the other 8 hours a day, but to look after his son, he had to quit work. Now he has no health insurance for himself, and hopes to stay healthy for a few more years until he is eligible for Medicare.

Still, David Grooms, the father, says he’s proud that his son is doing well.

“He’s happy, especially now that he has a girlfriend,” he says. That was an unexpected outcome of the lawsuit – when the son lost his nurses, Jennifer Keith came to work for him as a personal care aide. She lost that job when David got his nurses back, but that allowed the romance to blossom.

They cuddle and Jennifer buries her face in David’s long black hair as the sound of his respirator whooshes softly in the background. They watch TV together in David’s room or send messages on their Facebook pages.

When Chad White-Smith, of Metamora, Ill, turned 21 in February, a court tried to find a compromise. An attorney for the state argued that the program for adults had a cap on how much it would pay, and the state didn’t have unlimited resources to pay for more.

Chad’s doctor, Adalberto Torres, who is also the physician for Olivia Welter, told the court that “it’s just not safe” for White-Smith to rely upon aides instead of nurses. But the judge asked the family to try to find less expensive nurses and aides and see if they could make that work.

Returning from court one day last spring, Carmen Smith, Chad’s mother, was frustrated.

“I understand our economic situation is not very good right now,” she said, “but it’s not acceptable for me to just say I’m willing to risk my son’s life.”

Chad, who has a form of muscular dystrophy and uses a respirator day and night, agrees.

“It’s crazy. I don’t know what they thought would change when I turned 21,” he says. “I’m still the same. I’m not going to get out of this [wheel]chair.”

His family is still fighting for more funding.

Care At Home: A New Civil Right?

The reason families have started to win their cases is a federal law: The Americans with Disabilities Act. In recent years, courts, including the U.S. Supreme Court, have ruled that the ADA gives many people a civil right to get their government-funded long-term care at home.

One result of the law, says Weil, is that even with those budgetary pressures, states still have a legal obligation to provide more home and community-based care.

In 1999, the U.S. Supreme Court ruled, in Olmstead v. L.C., that under the ADA, people with disabilities often have the right to live in the community rather than in institutions. Since then, other federal laws and policies have said that states have an obligation to provide more home-based care. The new health reform law is filled with incentives for the states to spend more.

But federal law is contradictory. An older federal law, the 1965 law that created Medicaid and Medicare, says states have an obligation to provide nursing home care. Home care programs are still optional.

One result is that the number of Americans on waiting lists to get care at home has more than doubled in recent years. Across the country, some 400,000 elderly and young people with disabilities are on waiting lists for home-based care.

On Olivia Welter’s birthday, her family will gather for a quiet celebration. And they will make birthday wishes that a court agrees to tell the state to continue the level of care that has allowed Olivia to live at home and to celebrate birthdays with her family.

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A new study says almost one out of three adults in the U.S. currently serves as a caregiver. The time and energy they put into caregiving becomes like an unpaid job.

On average, they spend about 19 hours a week providing care, doing everything from bathing and dressing an elderly parent or loved one to balancing a checkbook or doing household chores.

“This is essentially a half-time job,” says of the AARP. The AARP and the National Alliance for Caregiving sponsored the survey, called , with funding from the MetLIfe Foundation. (The MetLife Foundation also underwrites reporting on aging at NPR.) Researchers interviewed nearly two thousand caregivers.

Many of the results of the survey are similar to those from earlier versions in and 1999. Two-thirds are women. The average age is about 48. Almost all–86 percent–care for a relative. Most often, 36 percent of the time, it’s for a parent. On average, caregivers have been providing care for 4.6 years, and three in ten report doing so for five years or more.

Ginzler says one of the biggest changes to show up in the survey this year is just how much caregiving can interfere with regular work. “Making accommodations in the workplace has increased in several ways,” she says. “In most cases, two-thirds of them, means they either go in late, leave early or take time off.”

In addition, large numbers said they’ve reduced work hours or taken a less demanding job (12 percent); turned down a promotion (6 percent), lost job benefits (6 percent), taken early retirement (3 percent) or given up work entirely (9 percent) to care for a loved one.

And 20 percent–like –have had to take a leave of absence.

In 2001, Ballweg was working in New York City as a flight attendant. But back home in Wisconsin, her father had Parkinson’s DiseaseÌýand her mother was struggling to take care ofÌýhim. So she closed down her apartment and drove back home and moved in with her parents.

She took a six-month leave of absence from her job. When it was up, her parents still needed her. So she cut her work to part time, and commuted back and forth from Wisconsin.

Now, it’s been five years since her father died. But her mother developed Parkinson’s, too. So Ballweg keeps her part-time hours for the airline. She’ll take a three-day trip to Cairo or Capetown. Then come home to Wisconsin for a week to cook and care for her mother.

“It’s the thing I’m most proud of,” she says, “I’m really proud of the way I’ve taken care of my Mom and Dad.”

A few years ago, Ballweg’s sister moved back to Wisconsin, too, and she helps some. That’s one of the fastest growing trends: As families try to avoid expensive care like assisted living, more members of a family help out to provide unpaid assistance.

Most people in the survey say they don’t consider caregiving a hardship. The longer a person has been providing care, the more likely he or she is to report being in fair or poor health. That came to 23 percent of those providing care for five years or more. But it was striking that, overall, 57 percent of caregivers say their health is excellent or very good.

But large numbers feel isolated. More than half, 53 percent, say their caregiving responsibilities take away time from friends and other family. And they’re the ones who are most likely to say they are emotionally stressed.

This was the first time the survey asked about caregiving for disabled children. And that turns out to be a large proportion of the total: About one out of 7. And while most caregivers for the elderly said it was very or somewhat easy to coordinate health care for their loved ones, that wasn’t true for those who provided care for disabled children. For them, 40 percent said it was at least somewhat difficult to coordinate care, including care at home and school.

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She’s not going to die, the doctor reassured her. But now nurses are asking her to think about dying. Or, more specifically, they’ve asked her to fill out a living will.

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It might seem almost rude to ask a woman who just a few hours ago had reason to fear she was about to die – but who now knows she’s OK – to think about how she does want to die some day. Yet it’s a routine question in this Midwestern city on the Mississippi River.

The specially trained nurse, in this case a woman named Laura Wiedman, will spend more than an hour with Colbert – and her husband Jim – and help them both think through the treatment they’d want at the end of life.

Respecting Choices Wiedman takes out a 12-page document and goes through the questions: Who do you want to make health care decisions for you if you can’t make your own? If you reach a point where it is reasonably certain you will not recover your ability to interact meaningfully with friends and family, do you want tube feedings, IV hydration, a respirator, CPR and antibiotics?

These are complicated questions. It’s something that the Colberts – like most adults in this country – have put off. But after Sandra’s scare today, and Jim’s hospitalization with a head injury this summer after he fell off an electric bicycle, it’s something they both know they need to do.

Sandra cries when she writes down that she wants each of her grandkids to speak at her funeral. But there’s more laughter than tears. Sandra says she wants Pink Floyd’s “Put Another Brick in the Wall” and Ricky Martin’s “Livin’ la Vida Loca” played at her funeral. Jim jokes that he’ll write down in his advance directive which of his daughters really was his favorite – a family joke among the girls.

The Colberts complete the directives and the nurse summons witnesses to watch them sign. Then Wiedman enters them in the health system’s computers.

Now, anytime a doctor in this large health system pulls up their records, their wishes for end-of-life care will be prominently displayed.

The result of all this attention is that nearly all adults who die in La Crosse, 96 percent of them, die with a completed advance directive. That’s by far the highest rate in the country.Ìý

But it’s expensive to spend time with patients filling out living wills. Medicare doesn’t reimburse for the time the hospital’s nurses, chaplains and social workers do this. Bud Hammes, the medical ethicist who started the program, called Respecting Choices, says it costs the hospital system millions of dollars a year. “We just build it into the overhead of the organization. We believe it’s part of good patient care. We believe that our patients deserve to have an opportunity at least to have these conversations.”

And that’s how La Crosse unexpectedly got in the middle of the national debate over health care and the so-called “death panels.”

A New Standard Of Care

There’s a proposal – it’s in the health bill passed by the House of Representatives – that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it.

Hammes says claims that government-run panels would pressure sick people to die are bizarre exaggerations – and that the experience of this Wisconsin city proves it. “These are conversations that we have with our patients. They’re not done in a secret room,” Hammes says. “These are open conversations involving family members, pastors, attorneys. It’s part of our community fabric now, it’s part of how we deliver care.”

One result of the way that care is delivered: At Gundersen Lutheran, less is spent on patients in the last two years of life than any other place in the country.

Choosing In Advance

The Dartmouth Atlas of Health Care documents the vast difference in health care costs from one place in the country to another. At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it’s more than $75,000.

“When people see the low cost in La Crosse, there are assumptions about rationing care, about denying care, about limiting – that we limit care for our patients,” says Hammes. But it’s not that dying people in La Crosse are denied care, he says. It’s that they’ve thought out their wishes in advance, so they get exactly the care they want. And often that means avoiding excessive and unwanted care.

When Hammes came to Gundersen Lutheran Health System as a clinical ethicist, he often found himself called in to help families who had suddenly found themselves in the middle of a health crisis. “When I asked these family members, ‘what would your Dad want,’ ‘what would your Mom want,’ ‘what did they say to you previously?’ The response was the same again and again and the response was, ‘If I only knew.'”

Hammes realized the shortcoming of the common practice of handing patients a living will. People didn’t fill them out. They gave up trying to figure out confusing issues like whether to withdraw a feeding tube – and when.

Bud Hammes, the medical ethicist who started Respecting Choices, says “We believe that our patients deserve to have an opportunity at least to have these conversations.” (Joseph Shapiro/NPR)

So Gundersen Lutheran started training its staff – as well as ministers, lawyers and others in the community – to help people understand – and make – those choices.

Hammes says the point is to help people make informed choices. Decisions made on the spur of the moment, in crisis, can lead to costly and unwanted care. If a patient’s wishes aren’t clear, the default choice of doctors and family is often to provide high levels of care – even when it’s something unhelpful.

But sometimes, getting a patient to think through choices can mean the patient decides he or she does want the most expensive care.

The Option To Change Your Mind

Joe Hauser, who used to run a TV repair shop, recently found out his kidneys are failing. His doctor told him he’s going to need dialysis, soon.

“I don’t want to go on dialysis,” he says, one recent morning as he takes his medicines with a glass of water at his kitchen table in the nearby town of Onalaska. “I don’t want to be tied to a stupid machine for 15 hours a week. My main thing is I don’t want to be a burden on anybody. I figure I’d love to live to be 150 as long as I can do stuff myself without depending on somebody else to do it for me. But once I get to I can’t do nothing, I’d just as soon croak.”

Joe’s wife, Janice, sits next to him and shakes her head. She wants her husband to go on dialysis.

“Maybe I shouldn’t say that,” says Janice, “but I’m being optimistic about it anyway.”

“See, good old Ma,” says Joe. “She would like to keep me around here as long as possible.”

“Well he’s right,” his wife says with an affectionate laugh. “Who else would put my eye drops in?”

So with some prodding from Janice, Joe recently talked to a nurse at Gundersen Lutheran about what it means to go on dialysis. Joe worried that once he started on dialysis, he wouldn’t be able to stop. That’s not how it works, said co-director Linda Briggs, a nurse in the Respecting Choices program.

Then Briggs invited Joe and Janice to visit the dialysis center and to drop in on a support group meeting, so they can talk to other patients.

Joe hasn’t taken up the nurse on that. He says he still doesn’t want dialysis.

But then there’s a surprise. He extends his left arm across the kitchen table. He wants to show what he calls his “buzzer.” It’s a spot at his wrist where you can feel the vibration from an artery and a vein that a surgeon has joined together.

It turns out that Joe Hauser’s decided to be ready, if he changes his mind. And if he decides he wants dialysis, then the needle of the dialysis machine can slip right in to that spot – the fistula – that the surgeon has prepared at his wrist.

And that gets to the point of why doctors and patients keep talking about end-of-life care in La Crosse: because choices are complicated. Because people’s feelings change about the treatment they want. And the best way to handle that is to know all your options, well in advance of a health care crisis.

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Cohen’s research showedÌýthat old age can be a time of creativity. One study showed that older people involved in community-based were healthier and more independent after a year, than people of the same level of health who didn’t take part. This made sense, he said, because science shows that brain cells do not die off as we age, but continue to grow.

And by creativity, Cohen spoke not just of the arts, but creative thinking. In his 2005 , “The Mature Mind: The Positive Power of the Aging Brain,” he told the story of his in-laws, stranded in a snowstorm with no taxis in sight, trying to get to his home.

His father-in-law spotted a pizza shop across the street and ordered a large pizza for delivery. “Oh, there’s one more thing,” he told the cashier. “We want you to deliver us with it.” That favorite family story, Cohen wrote, shows that “creativity knows no age limits. But in my experience, this kind of out-of-the-box thinking is a learned trait that improves with age.”

Cohen had his own spurt of mid-life creativity. He started making , to challenge the minds of young and old. One game was a three-dimensional combination of chess and Scrabble; another was an adaptation of cribbage. His last one was designed to play with someone with Alzheimer’s or another memory disorder.Ìý

Even last year, he was excited about his work on aging and imagination. He was interested in how he could help people with dementia use their imagination to replace memory. His own mother couldn’t remember her 90th birthday, he said. But she could imagine 90 candles on a cake shared by family and friends and just thinking about that gave her a sense of happiness.

Cohen, the founder of the Center on Aging, Health & Humanities at George Washington University, in Washington, D.C., on November 7 of prostate cancer.

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Taylor, 41, and her siblings – all of whom had families and children of their own – helped out. But with three elderly, disabled adults in one house, caregiving got expensive. Taylor says her father was surprised at how quickly the family went through its savings.

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“He said, ‘I worked and I did the right things. I had a pension and I put money away in savings and I had what I thought were the right insurances and the money didn’t go far enough.’ It just, it just wasn’t enough.”

When Insurance Isn’t Enough

Like most Americans, Taylor’s parents believed that Medicare and their private health insurance would pay all the costs of living in a nursing home. It doesn’t. Medicare, the federal health insurance for the elderly and disabled, paid the full cost of her father’s first 20 days in a rehabilitation nursing home for therapy to try to get him walking again.

But Medicaid, the state and federal insurance program for the poor, does pay for someone to stay long-term in a nursing home. So Taylor told her father he’d have to spend through the rest of his savings, go into poverty, and qualify for Medicaid.

“If you have ever had to look in the eyes of a 64-year-old man who has now had to live in a nursing home, and it’s horrible,” she says. “And he never ever made me feel bad about that decision. He never said, ‘Donna why’d you do this to me?’ But he told me, ‘This isn’t how it was supposed to work out.'”

Taylor’s father died in that Phoenix nursing home last year. The nursing home is part of Arizona Baptist Retirement Centers, where Taylor works as an executive vice president. Taylor thinks her father sort of gave up on life.

Better Options

Proposals written into health care overhaul legislation would help families like Donna Taylor’s, says John Rother, of the AARP.

One would encourage states to offer more generous benefits to disabled and elderly people on Medicaid who want to stay in their own homes.

And then, says Rother, there’s something that could help millions of people. “The CLASS Act,” he says, “which was introduced by the late Sen. Ted Kennedy, is a way of putting into place, gradually, an insurance approach to long-term care as opposed to the welfare-based approach we have today.”

Workers would choose whether to have money deducted from their paychecks. The deduction would, on average, come to about $65 a month and, when needed, it would pay about $75 a day, according to estimates by the Congressional Budget Office. That’s a little less than half of what one day in a nursing home costs now.

“The CLASS Act is not designed to protect people from the cost of nursing home care, very expensive care,” says Rother. “It’s really designed to help you stay independent at home and to get the services you need: home care, Meals on Wheels, visiting nurse. The kind of thing people do need very often to be able to continue to live independently, and, you know, I think that’s actually what most of us want.”

Debate Over Cost

How much the CLASS proposal would cost is still under dispute. The way it’s written, it’s supposed to pay for itself. How much gets paid out depends on how much is collected from those voluntary payroll deductions. But Frank Keating, president of the American Council of Life Insurers, says that’s wishful thinking. “It sounds good in principle,” he says. “But it is a huge unfunded liability.”

The CBO estimated that the CLASS plan would reduce the federal deficit by $58 billion over 10 years. That’s why it has a good chance of ending up in final legislation. But Keating says those savings come in the early years when the money’s being collected and that it’s going to cost trillions of dollars when people start needing the benefits.

A Hard Sell Keating represents companies that sell private long-term-care insurance. Fewer than 10 percent of older people have bought one of those private policies. It’s been a hard sell.

Still, Keating argues it’ll be even harder to get young people to buy into the proposed public plan. “It assumes young people will purchase this insurance from the government for a need 40 years down the line,” he says. “That simply isn’t going to happen. Young people aren’t going to do it unless they’re mandated to do it, and they’re not mandated to do it in this bill and they should not be.”

There hasn’t been a lot of high-profile debate about the proposals to add long-term care to health overhaul. The reason may be a reflection of the way Americans tend to think about getting old: It’s something best not thought about at all.

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A of graduating medical students finds that less than half say they have a good sense of how to navigate health care systems or the economics of practicing medicine.

The new doctors say they feel their medical schools did not prepare them to understand the mind-numbing mess of American health care. Only 40 to 50 percent of medical students, polled between 2003 and 2007, said they felt confident they were leaving medical school with appropriate training in the practice of medicine.

The problem with this, of course, is that patients expect their doctors to guide them through the health care system.

“Patients look to their doctors for this kind of guidance,” says study co-author Dr. Matthew Davis, an associate professor at the University of Michigan Medical School. “If we’re graduating students from our medical schools in the U.S. who have coin-flip odds of being confident of knowing the U.S. health care system, then are we really preparing them to be the best source of information for their patients?”

The study was the idea of one of Davis’ students: Mitesh Patel (now Dr. Patel, working at the University of Pennsylvania). Davis says Patel knew from his own experience, and from talking to other friends in med school, that medical students often felt they weren’t getting adequate instruction in how health care systems work.

So Patel and Davis looked at data from an annual survey of U.S. medical graduates conducted by the . More than 58,000 young doctors were surveyed between 2003 and 2007. And it was those doctors — more than half of them — who reported the low confidence in their training to understand the complicated health care system.

The study authors then identified a top medical school that had a lot of classes in health systems and then found another highly regarded school with little training. Not surprisingly, students from schools with more training felt more confident that they could negotiate patients though the health care system. But even in that group, just over 60 percent said they had received adequate training in the practice of medicine.

There’s some good news from the study: 80 to 90 percent of young doctors feel they’ve been adequately trained to diagnose your illness and make clinical decisions.

The study appears in the journal Academic Medicine.

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“Your health is obviously not anything that you should play around with,” says Toni, a high-school freshman. She’s pretty, smiling and stylish – from her bangs angled across her forehead to her sparkly red fingernails.

“You should take it very seriously and when you have a chronic illness like what I have and other kids have, it’s very important that we take care of ourselves because there’s a lot of preventable stuff that can happen to us.”

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“Are You Covered?”

It helps that her mother, Rhonda Dorsey, has good insurance, which she gets as a federal employee. She’s covered by the Federal Employees Health Benefits Program, or FEHBP. It insures 8 million federal workers, retirees and their families – and members of Congress. That federal health insurance program has been held up – by the President, lawmakers and other players in the health care debate – as a model of the kind of good insurance that should be available to all Americans.

Dorsey and others who are covered under FEHBP do report high levels of satisfaction, but it’s not some kind of super insurance. It’s pretty much like most insurance people get through their jobs. Federal workers, too, sometimes complain about the rising costs of their premiums and co-payments and about the hassles of getting care.Ìý

The Option To Choose

Toni was five years old when she was first diagnosed with diabetes – as long as she can remember. “At five, I really didn’t know what was going on, but I remember having my mother and my grandfather holding me down to give me shots and prick my fingers. And I was scared, I was confused, and it wasn’t a good time.”

Rhonda Dorsey’s health plan, provided by the Federal government, covers most of Toni’s diabetes medicine. (Greg Whitesell/KHN)

In those early, stressful days of her daughter’s illness, Rhonda belonged to a traditional HMO through FEHBP. She’d take Toni to see an endocrinologist, an eye doctor and one specialist after another. “I’d always have to get a referral. And sometimes I would forget and I’d get to the doctor’s office and it would be a mess. And so I’d be very apologetic and we’d have to call the pediatrician’s office, and it just was a waste of time in my opinion.”

There were limits, too, on the supplies she needed to manage Toni’s diabetes. Sometimes a prescription refill for needles or testing strips would be denied.

So Rhonda switched insurance companies. Her new plan allows her to keep taking her daughter back to the specialists who know her best. “I have the standard plan which means that I pay a little bit more up front,” she explains. “My deductible is a little bit higher, but I don’t have to deal with the referrals. I can go to any doctor.”

Federal employees get a lot of choice. That’s what makes the Federal Employees Health Benefits Program stand out compared to other insurance. In the Washington, D.C. area, there are at least 16 health plans to choose from. Nationwide, according to a new report by the Kaiser Family Foundation and the Health Research & Educational Trust, most companies offer only one health plan to their employees, and just one percent of companies offer three or more.

The federal Office of Personnel Management conducts annual negotiations with each health plan to set benefits and rates. That has allowed it to claim some success in constraining cost growth. But last year Blue Cross and Blue Shield – which covers about 60 percent of FEHBP enrollees – increased the premium for its standard option by 13 percent. As a result, the average for all federal plans went up 7 percent. The year before, the annual premium increase was just 2.1 percent.

Her Life Depends On It

Rhonda and Toni sit in their kitchen in Northeast D.C. (Greg Whitesell/KHN)

For Dorsey, an information specialist at the Nuclear Regulatory Commission, her insurance through FEHBP has been central to keeping Toni healthy. “In order to live a healthy life with Type 1 diabetes or any kind of chronic illness,” she says, “it’s so important to have good insurance. And I tell Toni all the time how blessed we are because we’ve met a lot of people who don’t have insurance at all.”

Still, even with good insurance, it’s expensive to manage diabetes. Toni pricks her calloused finger tips several times a day to check her blood sugar levels. Rhonda pays a little more than two hundred dollars a month for supplies.

Toni wears an insulin pump – it’s the size of a cell phone and it’s pink. “It had to be pink,” Toni says with a laugh. Adds her mother, “Pink is definitely her style.” The first pump cost five thousand dollars. Insurance paid all but five hundred dollars.

Toni knows she’s fortunate. This summer, she went to a summer camp for kids with diabetes. And she saw what kids do when they don’t have good health insurance. “At camp they provide you with supplies, but I’ve seen kids who have saved their needles and taken them with them,” she says. “Even though you weren’t like supposed to, they would kind of sneak them just to make sure they would have something when they got back home.”

Toni and Rhonda know that when people don’t have good insurance, they’re so desperate they will even reuse a needle. “It gets dull. And so it really hurts. But you have to have insulin, just like I said,” Rhonda says. “I mean, without insulin, Toni would die. So you, take the pain in order to live.”

Toni listens to her mother and adds, “I do feel very grateful for all that I have because that could be me.”

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Among all the players in the health care debate, doctors may be the least understood about where they stand on some of the key issues around changing the health care system. Now, a new survey finds some surprising results: A large majority of doctors say there should be a public option.

When polled, “nearly three-quarters of physicians supported some form of a public option, either alone or in combination with private insurance options,” says Dr. Salomeh Keyhani. She and Dr. Alex Federman, both internists and researchers at Mount Sinai School of Medicine in New York, conducted a random survey, by mail and by phone, of 2,130 doctors. They surveyed them from June right up to early September.

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Most doctors – 63 percent – say they favor giving patients a choice that would include both public and private insurance. That’s the position of President Obama and of many congressional Democrats. In addition, another 10 percent of doctors say they favor a public option only; they’d like to see a single-payer health care system. Together, the two groups add up to 73 percent.

When the American public is polled, anywhere from 50 to 70 percent favor a public option. So that means that when compared to their patients, doctors are bigger supporters of a public option.

Doctors’ Support For Public Option ‘Broad And Widespread’

The researchers say they found strong support for a public option among all categories of doctors. “We even saw that support being the same whether physicians lived in rural areas or metropolitan areas,” says Federman.

“Whether they lived in southern regions of the United States or traditionally liberal parts of the country,” says Keyhani, “we found that physicians, regardless – whether they were salaried or they were practice owners, regardless of whether they were specialists or primary care providers, regardless of where they lived – the support for the public option was broad and widespread.”

Keyhani says doctors already have experience with government-run health care, with Medicare. And she says the survey shows that, overall, they like it. “We’ve heard a lot about how the government is standing in between patients and their physician,” Keyhani says. “And what we can see is that physicians support Medicare. So I think physicians have sort of signaled that a public option that’s similar in design to Medicare would be a good way of ensuring patients get the care that they need.”

The survey was published online Monday by the New England Journal of Medicine. It was funded by the Robert Wood Johnson Foundation, a health care research organization that favors health reform.

AMA Doctors Also Support Public Option The survey even found widespread support for a public option among doctors who are members of the American Medical Association, a group that’s opposed to it. The AMA fears a public option eventually could lead to government putting more limits on doctors’ fees.

“The American Medical Association has traditionally been probably the loudest voice for physicians across the United States,” says Federman. “And part of our reason for doing this research was really to get at the real voice of physicians as opposed to the voice of one physician organization.”

Keyhani and Federman belong to another, smaller group, the National Physicians Alliance. It supports a public option, and Keyhani has spoken publicly about her own support for a public option.

What Would A Public Option Look Like?

It’s hard to know for sure what doctors mean when they speak about a public option, says Dr. James Rohack, president of the AMA.

“Because when I say public option, or you say public option, it means different things to different people, kind of like the Rorschach ink blot test – when you look at it, to some people it means one thing, to other people it means the other thing.”

Politicians in Washington turn to the AMA for support and guidance, even though fewer than a third of practicing doctors belong to the lobbying group.

The AMA’s own position on a health overhaul has, at times, been hard to pinpoint. In July, it praised the bill that came out of the House of Representatives. That bill included a public option. But the AMA made it clear that what it really liked was that it eliminated cuts in doctors’ fees from Medicare.

“And so I think that’s why we need to be very clear about what does the AMA articulate for,” says Rohack. “It’s to make sure that everyone has coverage that’s affordable, that’s portable and that is quality – that is, it covers the things you need to cover because you’ve got a medical condition or developed a medical illness.”

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