Photo by Kim Francois
Bob Kafka, grizzled, with a halo of gray hair and clad in a blue T-shirt with the words “Free Our People” emblazoned on it, took the stage on Nov. 1 as the keynote speaker of a conference put on — and in large part attended by — Pennsylvania bureaucrats and service providers who deal with long-term care. This wasn’t the usual venue for one of America’s most hard-core activists. In fact it’s actually the type of venue protested by folks like Kafka. But Kafka’s not an ordinary activist. This day, he was playing the role of a senior statesman come from the land of hard-core activism to clap the land of bureaucracy on the back and give a hearty “well done.”
“In the South, confrontation’s not seen as appropriate,” Kafka, a C5-6 quad as a result of a 1973 car accident, told the crowd. “There you’re to be nice, to go along to get along. Here in Pennsylvania, that’s not your problem!” The crowd laughs, and Kafka goes on to explain, “Here, you talk things out, so stuff moves faster.” He wove in compliments like these with good, hard advocacy facts, and they loved him for it. He is as good at stroking people who do right by our community as he is at protesting people who need to change their ways. And whatever he does, wherever he is, most likely, yes, he will be wearing his ADAPT shirt.
This conference was a victory lap of sorts for Kafka, as it was held on the same day states were to submit their applications to the feds for “Money Follows the Person” funds, which, if awarded, will provide enough money for states to transition thousands of people out of nursing homes. Each state in the union was able to apply for these funds, but only the states who could show close ties with their advocacy community had a shot at getting the monies. Thirty-seven states told the feds they were interested in applying for the funds, which will be awarded on Jan. 7.
Kafka uses a nautical metaphor to describe the impact Money Follows the Person will have on our nation — turning our nation’s long-term care system is as slow and deliberate as turning around the Queen Mary. But, says Kafka, “The Queen Mary is turning.”
Stephanie Thomas says don’t let disability rights victories fool you, the fight’s not over yet. Photo by Kim Francois
Money Follows the Person is based on a simple idea. Basically, it provides a pool of money that can be used to get people out of institutions and build the community infrastructure necessary to keep them in the community. Stephanie Thomas, Kafka’s wife and fellow ADAPT national organizer, likes telling the story of how Money Follows the Person came about.
“We in Texas used to go to our state legislature and say, ‘Why can’t you give people the choice of where they receive services,’ and they’d be paternalistic and ignore us. And in the late ’90s, around the time of the Olmstead decision, we said, ‘Look, you can do this, the Supreme Court says you need to do something,'” says Thomas, 49, a T12-L1 para who was injured in a fall when she was 17. Then Glen Maxey, the liberal and first openly-gay Texas state legislator, wrote a “rider” (an amendment unrelated to a bill’s topic) putting MFP funds into the budget, but the rider ultimately got knocked off at the last minute.”Finally Rob Junell, the head of the state’s House Appropriation committee, who is very conservative, invited us into his office and said he knew they needed to do something — what could they do? We told him about the rider and he said, ‘Oh, that’s a good idea, that can work.’ We’d been saying it for years, and he heard it, he got it. For him, the conservative value of ‘get government off your back, keep families together’ fit well with the goals of Money Follows the Person.”
A new rider was drafted, the language written by another conservative who heard ADAPT members testifying and realized what they wanted made good sense. “So we finally got that rider on the budget. It was terribly exciting when it happened here,” says Thomas. “Hundreds of people started getting out, all ages, people over 100 and little kids. You could see it was the opening of the door for hundreds of people.”
As the Texas program grew and expanded, the activists started building up good data and statistics, and began talking about Money Follows the Person on the national level. The nuts and bolts of the program were shared with other ADAPT groups around the nation. Slowly the idea started to spread, with some states starting their own Money Follows the Person programs.
“It’s that old thing about all politics is local,” says Mark Johnson, a C5-6 quad and national ADAPT organizer from Atlanta, Ga. “You can manage your advocacy efforts more easily in your own neighborhood that you can in Washington, D.C. It’s easier to make it a priority in your own town.”
Johnson says Money Follows the Person was so successful in Texas that, in many ways, the program began to sell itself. “The Texas state officials went around the country, consulting for the last couple of years, talking about what exactly their MFP program consists of, how it works, what lessons they’ve learned. This program wasn’t their idea — they were told to implement it — but now they feel ownership and are proud of it. It would have been hard to start this program nationally,” says Johnson.
For Bob Kafka, the principles of civil disobedience are universal and timeless. Photo by Tom Olin
During ADAPT’s 2002 fall action — a weeklong series of demonstrations — in Washington, D.C., it rained pretty much the whole week, even stormed at times, and 500 ADAPT protestors blocked a main traffic artery near the White House. The police circled protestors, preparing for mass arrests, when a bureaucrat walked into the intersection to head them off.
“I was working in my office on probably about 15 other issues,” Mark McClellan told National Public Radio. “I got a call from the chief of staff at 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, who later was appointed to head up the Centers for Medicare and Medicaid Services, was a member of the President’s Council of Economic Advisers at the time.
Kafka and McClellan both enjoy poring over the minutiae of polices dealing with disability and aging, and both care deeply about the people whose lives are determined by such policies. So the two men, one very liberal and the other firmly conservative, found common ground. Kafka was able to show McClellan the sense in ADAPT’s Money Follows the Person concept, and that meeting in the intersection led to another meeting between members of ADAPT and the Office of Management and Budget, where ADAPT again explained the concept of MFP.
“What do you want, the office asked us,” says Kafka. “We said Money Follows the Person, and $1.75 billion appeared in the budget.” Although just a fraction of what institutions usually receive, it’s enough money to get up to 100,000 people back into their own homes. The money will be spent as a federal match for state dollars over the next five years.
ADAPT’s national actions are very successful. True, MiCASSA has languished in Congress for over 15 years (although many think that will change as soon as next session). But much of MiCASSA has been broken off and codified in national and state laws and policies. Back in 1990, when ADAPT first began addressing personal assistance, its goal was for 25 percent of our nation’s long-term care budget to go to people living in their own homes. Right now, according to Thomas, in most states over 30 percent of long-term care funding now is geared toward the community.
“Piece by piece it’s falling — sometimes being pushed — into place,” says Thomas. “We are getting what we wanted. There’s much more consumer control in many places, and the option of having services. There are still waiting lists, which is not OK, but the paradigm has shifted.”
The Feminist and the Wonk
To most ADAPT insiders, Kafka and Thomas are thought of as a single unit. But each brings something distinct to ADAPT’s leadership.
“Bob is much more a policy wonk than anybody would ever want to admit,” says Johnson. “To be honest, when people call me about policy crap, I don’t get down that deep.” But Johnson says Kafka often sees trends before they actually occur. “People are now beginning to understand he really does know a lot about policy, and getting what we want is a lot more than just organizing a protest.”
And how does Thomas figure into this? “Stephanie came along when ADAPT was criticized because we had a nondisabled leader and no women,” says Johnson. “She provided leadership from a woman’s perspective. She can be tough on people, too, but she came along to fill some of that void and mobilize some of that hope.” Indeed, many women disability rights leaders point to both Kafka and Thomas as being a great source of support, but say Thomas’ perspective is especially helpful. “I’ve known them ever since I graduated college, in 1996,” says Chicago ADAPT organizer Rahnee Patrick. “I could call and talk to them about my own personal growth, wrestling with the politics. When people have power, they tend to oppress people in our own community. They’ve been able to help me navigate that.”
ADAPT teaches that good advocacy is multi-pronged, like a pitchfork, and direct action is one prong. Photo by Kim Francois.
Patrick says she was unjustly fired from a CIL, and when that happened, she called Kafka and Thomas. “They encouraged me, said start your own group, keep going, here’s some work for you to do,” says Patrick. “That kind of presence is so important for a person who is coming up. I really trust them, they’ve always been supportive of me.”
Supportive also means keeping Patrick on task, even when her personal life threatens to take over. “I got married to Mike Ervin on Sept. 3, and five days later I held the first ADAPT youth summit. Which was ridiculous timing. The planning? It was bad,” laughs Patrick. “Steph was very supportive of me, the whole wedding plans, and also she’d tell me to keep it up, keep focused, how are you doing?”
Patrick models herself after Thomas, saying Thomas has shown her what it means to be a feminist partner in a marriage. “She is a strong, opinionated woman and has a strong, opinionated husband. She’s my role model,” says Patrick. “I have a marriage to take care of as well as the peace and justice role. I watch her. I see that the youth I work with, they watch me just like I watch Thomas — they study me.” Kafka and Thomas attended a national ADAPT action right after they were married. So did Patrick and Ervin.
Klesmer and Jambalaya
Thomas and Kafka met at a disability conference in 1984 and have been married since May 1986. “He was kind of a vagabond at the time, allegedly living in Smithville, 45 minutes east of Austin, but was always staying in Houston, then Smithville, then Austin with me,” says Thomas. “But really he was in his car.”
Well, actually, says Kafka, he lived in a trailer before moving in with Thomas. “I had just left the University of Houston, where I was the director of handicapped student services — that’s what it was called back then.” He moved close to Austin to work as a Vista volunteer for the Texas Coalition of Citizens with Disabilities. He met Thomas at the TCCD annual conference.
Although neither are prone to sentimentality, they each say they were instantly drawn to the other. “I thought he was an interesting person and understands things the way I understand them and immediately felt like a soul mate,” says Thomas, who was the outreach coordinator for the Austin Resource CIL at the time.
“The wedding was in our back yard,” says Kafka. “We had a county judge, very contractual.” It had rained all week, but the sun that day was strong enough to dry up the backyard so it wasn’t a mess.
“Luckily the yard was on a slope so it drained fast,” says Thomas. “It dried up enough that no one was in the mud. If you’re in a chair, being in the mud is not always the best.” The couple snagged a student of the famous Cajun chef, Paul Prudhomme, to cook up some jambalaya, and talked the wedding band into playing klesmer songs. “They didn’t get a lot of requests to play klesmer at the time. At first they were playing jazz. We’re like, well, that’s great, but can you play more klesmer? It’s great to dance to, and I like the combo of the joy and sadness, the intensity,” says Thomas. “I just loved that music.”
“We sometimes say that since we work together and go to actions together that we’ve been married 75 years in real time,” says Kafka. “It ebbs and flows. In the early times we did everything together, but now we’re a bit more separate. It all works.”
Each day at an ADAPT action a small team called “day leaders” plans out where the group will go that day, what they will do and what they will ask for. Randy Alexander, a para from Memphis, Tenn., and a day leader at the last national action, remembers how excited Kafka got when they reached their target. “We were marching to the Republican National Committee headquarters and I was up in front leading the line, and as we got up to the building the door popped open, so we had folks going in,” says Alexander. “I was outside directing people in and here comes Bob and he said, ‘You mean we’re actually going in?’ I said yeah, and you should have seen the look on his face. He was so excited. It had rained all morning and he bounced around in the mud and when he got close enough he just cut the corner through a flower bed — he wanted to make sure he got in there just like everyone else, he wanted to be one of the ones going up inside.” Thomas, who held the back of the line, wasn’t as lucky.
“They’re both so excited about everything going on, and when we have our bi-yearly national strategy meetings, there’s tons of input, tons of discussion and it really comes from everybody who’s there,” says Alexander. “They leave plenty of room for debate and sometimes it gets pretty heated, it’s great. Yet they keep us well-focused to remember what it’s all about.”
Randy Alexander is one of the younger leaders being mentored by Bob Kafka and Stephanie Thomas. Photo by Tom Olin.
Since previous national ADAPT organizer Mike Auberger stepped down from leadership a few years ago, most everyone looks to Kafka and Thomas as the prime leaders of ADAPT. “Our style is to delegate, to widen the circle,” says Kafka. “That’s a different style for ADAPT, and that’s what allowed our 114-mile march from Philadelphia to Washington, D.C., a few years ago, for example. It’s not the Bob and Stephanie show.”
ADAPT actions are intense, and the excitement of the actual protests often dwarfs what Thomas calls the “non-sexy stuff” that’s necessary for people to be able to protest. “Sending out e-mails, keeping mailing lists up to date, doing the newsletter, keeping the Web site current, that’s all important if people are going to know what’s going on,” she says. “Sometimes that less glamorous end of protesting tends to be ignored, and everyone only thinks of the sexy parts … the action, being a leader, blah blah blah … but if you don’t take care of the basics, there isn’t going to be any of the rest of it.”
Someone needs to drive people to and from the airports, make sure hotel room keys are passed out, make sure there’s enough food at the demonstrations for everyone, and all the other crucial chores that make activism possible. “That’s the backbone of it,” says Thomas. “I work on a lot of it, and a lot of other people help, too.”
Is direct action relevant in the 21st century, or are those methods hopelessly outmoded in the Internet-driven Information Age? “I believe the foundations of direct action are universal and timeless,” says Kafka. “People say it’s not the ’60s anymore and I totally agree. It’s always about the demand to get to the table, to focus the energy … to address power and try to bring power to our people.”
To ensure that ADAPT continues, Thomas and Kafka are focusing on supporting new leaders. “We have a second level coming up, people like Randy Alexander, Rahnee Patrick, and so on. We’re making a concerted youth outreach,” says Kafka, who turned 60 this year. “We’re looking for people to pick up the gauntlet of direct action.”
Thomas and Kafka both stress they’re not getting younger — and for that matter, the other ADAPT long-timers aren’t, either. There’s a big push for new leadership, and Thomas says don’t be fooled by disability rights victories. The work’s not done yet. “We’ve come a long way, but there are a lot of things that need to be done and need to be protected,” she says. “There are people who would like to take away the advances we’ve made.”
Like advances in the fight for people to receive services where they’d like to live, for example. Yes, ADAPT surpassed its original goal of 25 percent of nursing home funds to be redirected into the community, and yes, Money Follows the Person is now a reality, and most states are building the necessary infrastructure to allow an exodus of people to return home. These crucial changes came about because of ADAPT’s persistence.
But it’s not enough. Kafka and Thomas both say we still need MiCASSA to become law. “It will be reintroduced as MiCASSA: Community Choice Act,” says Kafka. “We plan to hit the ground rolling when the new Congress is sworn in.”
ADAPT may use the same strategy it used with MFP, meaning don’t be surprised if MiCASSA is passed as part of another bill. “If we can get it alone, that’s great, but if it has to be hooked onto something else, we’re positioning ourselves for that to be done,” says Kafka. “And we keep it bubbling up from grassroots, not top down.”
Why is MiCASSA still important, when much of the original idea has become part of what’s available in most states? Because it still depends on what state you live in whether you’ll be allowed to sleep in your own bed at night, or a bed someone else chooses for you. And that’s why, as long as they’re able, Kafka and Thomas will keep pressing forward.
Escaping the Box
By Roxanne Furlong
January 1 marks the federal implementation of Money Follows the Person, which will disburse $1.75 billion in grants to states to provide more community living choices for people with disabilities. This year also is the umpteenth anniversary of the introduction in Congress of the Medicaid Community Attendant Services and Supports Act. “When MiCASSA passes,” says Mark Johnson, director of advocacy for Shepherd Center in Atlanta, Ga., “it will be the exclamation point to MFP and the Olmstead decision of 1999.” The Olmstead decision affirmed the ADA regulation that all public services and programs be provided in the most integrated setting possible, yet, according to Steve Gold, ADAPT’s independent lawyer and “Godfather of the Olmstead Theory,” it will take more than federal money and personal assistance services to get people out of nursing homes and institutions.
Gold warns that the Olmstead decision could be a “use it or lose it” situation because it has not been used enough to be established as a principle. He says it needs significantly more advocacy, and that every state’s Protection and Advocacy agency and CIL should be stronger advocates for people languishing in institutions.
“Every P&A can bring lawsuits on anyone’s behalf, but they don’t seem to want to do it,” Gold says.
Gold also has a letter from one particular state that says they’re not going to apply for MFP because it’s not “sustainable” — they say they can’t fund the program with no new state dollars.
“How dare the states not apply!”
Thirty-seven states did say they’d apply for MFP federal money — or as Gwen Gillenwater, senior director of public policy outreach and field activities for the American Association of People with Disabilities, says, “They took a bite of that apple, and whatever their reasoning, it at least lets us know there is some effort to move toward home and community based services.”
Gillenwater, who has served as director of a local CIL and as a director of the NCIL, adds, “MFP is cracking the door a bit for MiCASSA. But how it plays out
[MFP, Olmstead and MiCASSA] depends on housing options. You can’t get people out [of institutions] if they’ve no place to go.”
Gillenwater says that in the past 10 years, every survey she has been a part of comes back with affordable, accessible housing as the number one issue people with disabilities face. “And, I’ll be honest, there’s not as much effort working on housing as I feel there needs to be in the disability community,” she adds. “ADAPT understands and really appreciates the fact that you can’t get out of a nursing home or not go into one unless you’ve somewhere to live.”
But there is a cost obstacle. For many, moving out of an institution is literally starting all over, and just being able to find basic necessities — a skillet, microwave, money — can be a tough hurdle.
“The ADA was all about mandating integration,” Johnson says, explaining one rationale for MiCASSA. “It was about community living. Granted, now you might be able to get into an accessible building, you might be able to get on an accessible bus, but if someone’s not there to get you out of bed, what good is it?”
Johnson suggests four ways we can all become advocates:
Encourage your member of Congress to become a co-sponsor of MiCASSA.
Support ADAPT’s MiCASSA campaign.
Gain media attention and monitor your state’s support of MFP.
Tell your story, tell your story, tell your story … to anybody who will listen.