Disabled Activists Win Battle for Independent Care
Earlier this summer, federal officials announced what they call the boldest change in the way the government pays for long-term care since the invention of Medicare and Medicaid. Washington will now provide $2 billion to states that help people leave a nursing home - instead of paying for them to live in one.
That decision came because of a highly unlikely alliance between a group of disabled activists in wheelchairs who came to Washington trying to get themselves arrested at the White House gates -- and the Bush administration aide who ended up listening to them.
The Wheels Begin Turning
The momentum for change began four year years ago when about 200 demonstrators in wheelchairs rolled into the intersection closest to the White House and shut down all traffic.
"It was really quite a scene," says Bob Kafka, a leader of the group American Disabled for Attendant Programs Today (ADAPT). "It was thundering and lightning. It was sporadically raining."
ADAPT uses non- violent direct action tactics to enact policy changes for disabled individuals. Many of the ADAPT protestors are severely disabled and require the help of an attendant to move.
Still, the protestors travel around the country and practice civil disobedience. They want people with disabilities to get out of nursing homes and for the government to pay for personal care attendants. Getting an attendant for a few hours a day makes the difference between whether they can live in their own homes or end up moving into a nursing home.
Four years ago, the protestors tied up traffic for three hours in front of the White House and the police were getting ready to make arrests when a White House aide got an urgent phone call.
"I was working in my office on probably about 15 other issues," says Mark McClellan, who was at the time a member of the President's Council of Economic Advisors. "I got a call from the chief of staff of the White House, saying, 'Mark, there are some people outside who are blocking traffic at the intersection of 17th and Pennsylvania. It's coming up on rush hour. Go fix it.'"
McClellan went outside, where he met the demonstrators and Bob Kafka in the middle of the intersection. His clothes and young looks contrasted with Kafka's long gray hair and wild beard. The two men could not be more different in terms of political beliefs or style. But on that rainy day outside the White House, they found things in common.
The Administrator and the Activist
Both Kafka and McClellan are fascinated by the policy details of how the government cares for the elderly and disabled. Both also believe that individuals often make the best choices about their own care.
McClellan practiced medicine before joining the Bush administration. "Many of my patients had disabilities and chronic illnesses," he says. "And in those experiences, there were so many cases if you just listen to the patient -- if you could get the patient involved in deciding what treatments were best for them -- you could get the better results."
After President Bush appointed McClellan the head of the agency that runs Medicare and Medicaid, he met with Kafka and other ADAPT members four times a year.
Earlier this year, the White House proposed legislation to start a program called Money Follows the Person, which gives states extra money to move elderly and disabled people out of nursing homes and into their own residences. Congress alotted $2 billion over the next five years for the program -- still just a tiny portion of what Medicaid spends on nursing homes.
Bob Kafka says it's enough to move at least 100,000 people. "Mr. McClellan has made us a believer in bureaucrats," he says, "That they can keep their word and follow through."
Though some disability and health advocates object to other parts of the Medicaid reform law -- specifically the part which allows states to change benefits and charge co-payments -- McClellan says those objections miss the historic significance of the new long-term care policy.
"This is the biggest change in long-term financing in decades," he says.
McClellan recently announced his resignation. Though he'll be most remembered for setting up the new Medicare drug benefit, he says one of his proudest accomplishments was his work with ADAPT.
Adapt and Move On
For Bob Kafka, the work isn't over. He was back in Washington this week, where several hundred ADAPT protestors surprised a few security guards at the side entrance of a downtown hotel, where a trade organization for managed care companies was having their legislative conference.
The protestors in wheelchairs and scooters rushed into the ornate hotel lobby and took it over. "We as people with disabilities want the managed care community to understand that we want to live on our own," says Kafka.
The ADAPT demonstrators held the hotel lobby for two hours and got their meeting with the managed care officials.
But Kafka has one other meeting before he leaves Washington. Today, he and other ADAPT leaders will meet with Mark McClellan to talk about how the new federal program is progressing.
They will take about how McClellan's agency just started taking applications for grants two weeks ago. Thirty states have recently told McClellan that they want to take part in the new program to help elderly and disabled people move out of nursing homes.
The Humiliation of a Shower
Nelson Peet was 48 years old when he ended up in a Texas nursing home. And he says he feared he would never get out.
It had been years earlier, when he was a young man, that Peet became paralyzed, the result of a motorcycle accident. He lived on his own--with help from family and friends--until he developed bed sores in 2004. He went to a hospital and then to the nursing home. That facility helped him get better. But he says he was miserable there. He says he was stripped of basic control over his life. Aides decided when he ate or went to sleep. He shared a room with strangers. "There is no privacy," says Peet of living in a nursing home. "The best chance you have of getting privacy is to close your eyes and go to sleep."
Peet spent long, lonely days. Often he'd spend days--no matter what the weather--on the smoking patio. "Being in a nursing home, I've got to tell you, was like being in the stockyards," says Peet. "Everybody eats at the same time. What does everybody do in the nursing home? Eat. Drink. Sleep. Watch TV. Maybe a half hour a day, they might have some little activity like Bingo, once a week. Or arts and crafts. Maybe a birthday party once a month for everybody in the whole month."
Members of ADAPT of Texas found Peet in the nursing home and helped him get out. They used a national demonstration program that had been set up with funding from Medicaid. The Texas Money Follows the person program allowed someone in a nursing home to use Medicaid funding to, instead, live in a house or apartment. In the first two and a half years of the program, nearly 11,000 people had moved out of nursing homes. They included the very young to the very old, including many over the age of 90. According to federal Medicaid officials, the in-home services cost Texas about 20 percent less than the institutional care. That led the Bush Administration and Congress to start a similar program that will be open to all states and last for five years.
Peet spent sixteen months in a nursing home. He got out on June 1. This week, Peet joined a couple hundred other ADAPT members in Washington, D.C. to demand more support to get others out of nursing homes. Peet and other ADAPT members took over the lobby of a downtown hotel where a national trade association of managed care providers was meeting. ADAPT members wanted a meeting with managed care officials, and got it. In the hotel lobby, Peet held a sign that said "Let Us Manage Our Care." He's a large man, with long hair and a thick moustache. He was wearing a rain poncho with an ADAPT sticker that said "Free Our People". And an orange Texas Longhorns hat.
Nelson Peet described some of the miseries living in a nursing home. And of the time he waited ten days to get a shower
-- Joe Shapiro
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Nelson Peet was 48 years old when he ended up in a Texas nursing home. And he says he feared he would never get out.
It had been years earlier, when he was a young man, that Peet became paralyzed, the result of a motorcycle accident. He lived on his own--with help from family and friends--until he developed bed sores in 2004. He went to a hospital and then to the nursing home. That facility helped him get better. But he says he was miserable there. He says he was stripped of basic control over his life. Aides decided when he ate or went to sleep. He shared a room with strangers. "There is no privacy," says Peet of living in a nursing home. "The best chance you have of getting privacy is to close your eyes and go to sleep."
Peet spent long, lonely days. Often he'd spend days--no matter what the weather--on the smoking patio. "Being in a nursing home, I've got to tell you, was like being in the stockyards," says Peet. "Everybody eats at the same time. What does everybody do in the nursing home? Eat. Drink. Sleep. Watch TV. Maybe a half hour a day, they might have some little activity like Bingo, once a week. Or arts and crafts. Maybe a birthday party once a month for everybody in the whole month."
Members of ADAPT of Texas found Peet in the nursing home and helped him get out. They used a national demonstration program that had been set up with funding from Medicaid. The Texas Money Follows the person program allowed someone in a nursing home to use Medicaid funding to, instead, live in a house or apartment. In the first two and a half years of the program, nearly 11,000 people had moved out of nursing homes. They included the very young to the very old, including many over the age of 90. According to federal Medicaid officials, the in-home services cost Texas about 20 percent less than the institutional care. That led the Bush Administration and Congress to start a similar program that will be open to all states and last for five years.
Peet spent sixteen months in a nursing home. He got out on June 1. This week, Peet joined a couple hundred other ADAPT members in Washington, D.C. to demand more support to get others out of nursing homes. Peet and other ADAPT members took over the lobby of a downtown hotel where a national trade association of managed care providers was meeting. ADAPT members wanted a meeting with managed care officials, and got it. In the hotel lobby, Peet held a sign that said "Let Us Manage Our Care." He's a large man, with long hair and a thick moustache. He was wearing a rain poncho with an ADAPT sticker that said "Free Our People". And an orange Texas Longhorns hat.
Nelson Peet described some of the miseries living in a nursing home. And of the time he waited ten days to get a shower
-- Joe Shapiro
RENEE MONTAGNE, host:
It's said that political bipartisanship is dead. Here's a story of how people on opposite sides came together and started a major change in the way government cares for the elderly and disabled.
It's about an unlikely alliance between a group of disabled demonstrators in wheelchairs who came to Washington trying to get themselves arrested at the gates of the White House, and the Bush administration aide who ended up listening to them.
NPR's Joseph Shapiro has more.
JOSEPH SHAPIRO: The story starts on a cold and rainy day in Washington a little more than four years ago, when about 200 demonstrators, most of them in wheelchairs, rolled into the intersection nearest the White House and shut down all traffic.
Unidentified Woman: The people united will never be defeated.
Mr. BOB KAFKA (ADAPT): It was really quite a scene. It was thundering and lightening. It was sporadically raining.
SHAPIRO: Bob Kafka is a leader of the group ADAPT. He's been arrested 35 or 40 times at demonstrations like this one. He's lost count.
Mr. KAFKA: There were people sort of chanting, our homes, not nursing homes, I'd rather go to jail than to die at a nursing home.
Unidentified People: Hey hey! Ho ho! Nursing homes have got to go!
SHAPIRO: Many of the ADAPT protesters are some of the most severely disabled people you've ever seen. Many can't move without help from an attendant. Still, they travel to cities around the country and practice civil disobedience. They want people with disabilities to get out of nursing homes.
Many of them have lived in one. On that day four years ago they'd come to Washington to demand a meeting at the White House. They'd tied up traffic for three hours and the police were getting ready to make arrests.
A White House aide got an urgent phone call.
Mr. MARK MCCLELLAN (Former Member, President's Council of Economic Advisors): I was working in my office on probably about 15 other issues. I got a call from the chief of staff of the White House, saying, Mark, there are some people outside who are blocking traffic at the intersection of 17th and Pennsylvania. It's coming up on rush hour. Go fix it.
SHAPIRO: Mark McClellan was a member of the president's council of economic advisors.
Mr. MCCLELLAN: So I went out there and started talking to Bob Kafka and some of the other folks out there, and this was a new experience for me, getting out and walking around, talking with protesters.
Mr. KAFKA: Out from the White House came this young gentleman with a blue blazer, khaki pants and a loafer. I mean, I must admit many of us thought it was sort of a Republican preppy who was just going to sort of glad-hand us.
SHAPIRO: For the record, McClellan was wearing a blue suit.
But his clothes and young looks did make a contrast with Kafka's long gray hair and wild beard. By himself, McClellan met Kafka and other ADAPT leaders in the middle of the intersection, surrounded by a couple hundred tired but angry demonstrators, like Linda Anthony.
Ms. LINDA ANTHONY (Demonstrator): You know what? It's the continuation of the existing policy. You're going to continue to lock people up and you're going to do it today, instead of later.
Mr. MCCLELLAN: I'm saying I don't know at this stage what the most effective way to address your concern is, because we have not...
SHAPIRO: Kafka and ADAPT want government to pay for personal care attendants to help them get out of bed, get dressed and eat. They say getting an attendant for a few or several hours a day makes the difference between whether they can live in their own homes or end up moving into a nursing home.
Mr. KAFKA: We believe that the administration, like administrations before, have sold out to the nursing home lobby.
Mr. MCCLELLAN: Let me be very clear about our...
SHAPIRO: Bob Kafka and Mark McClellan come from very different political beliefs, very different styles. But that day, in the rain outside the White House, they found things in common.
Both are fascinated by the policy details of how government cares for the elderly and disabled. And both believe that individuals themselves often make the best choices about their own care.
McClellan's understanding came from work he did before joining government. He'd practiced medicine.
Mr. MCCLELLAN: Many of my patients had disabilities, had chronic illnesses, and in those experiences there were so many cases where, if you just listened to the patient, if you could get the patient involved in deciding on what treatments were best for them, you could get to better results.
SHAPIRO: Two years ago President George Bush made McClellan the head of the agency that runs Medicare and Medicaid. His conversations with Kafka and other ADAPT members continued. They'd get together four times a year.
Earlier this year the White House proposed legislation, and Congress passed it, to start a program called Money Follows the Person. It gives states extra money to move elderly and disabled people out of nursing homes and into their own homes. There'll be nearly $2 billion over five years. That's still just a tiny part of what Medicaid spends on nursing homes, but Bob Kafka says it's enough to move at least 100,000 people.
Mr. KAFKA: Mr. McClellan has sort of made us believer in bureaucrats, that they actually can keep their word and follow through.
SHAPIRO: Some disability and health advocates in Washington objected to other parts of that Medicaid reform law that allows states to change benefits and charge co-payments. They felt McClellan, by getting ADAPT on board, had cleverly split the opposition.
But McClellan says those objections miss the historic significance of the new, long-term care policy.
Mr. MCCLELLAN: This is the biggest change in long-term care financing in decades.
SHAPIRO: For the first time, government policy says people should have an automatic choice how to use Medicaid money: to go to a nursing home or to get services in their own home. McClellan recently announced he'll be leaving his job. He'll be remembered most for setting up the new Medicare drug benefit. He says one of his proudest accomplishments was his work with ADAPT.
For Bob Kafka and ADAPT, there's more work to do.
(Soundbite of demonstrators)
SHAPIRO: ADAPT protesters were back in Washington this week. On another dark and rainy day they surprised a couple of over-matched security guards at the side entrance of a fancy downtown hotel. A couple hundred protesters, most of them in wheelchairs and scooters, rushed into the ornate hotel lobby and took it over.
Unidentified Man: Shame on you. People are dying. Shame on you.
SHAPIRO: Bob Kafka took aim at a new target.
Mr. KAKFA: We're here at the Hilton Hotel. The American Association of Health Plans, which is the trade association for all the managed care companies, are having their legislative conference.
SHAPIRO: Kafka says if people with disabilities are going to live in their own homes, then they need control over their healthcare too. The ADAPT demonstrators held the hotel lobby for two hours. They got their meeting with the managed care officials.
Kafka has one other meeting before he leaves Washington. Today he and other ADAPT leaders will meet with Mark McClellan. The government official will talk about how his agency just started taking applications for the new money.
That was less than two weeks ago. But already, McClellan will tell Kafka, 30 states have said they want to take part in the new program to help elderly and disabled people move out of nursing homes.
Joseph Shapiro, NPR News, Washington.
MONTAGNE: And one disabled activist tells his personal struggle to get out of a nursing home at npr.org. Transcript provided by NPR, Copyright National Public Radio.
