Program: NPR Morning Edition Friday, September 15 2006
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Reporter: Joseph Shapiro

The audio of the story, and additional material, will be available on the NPR website at: http://www.npr.org

Morning Edition
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September 15, 2006 - 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 allotted $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.

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