One of the top disability stories in 2004 was the Centers for Medicare and Medicaid Services’ crackdown on fraud and abuse in sales of power wheelchairs. For the durable medical equipment industry, the “crackdown” amounted to overkill, more like a sledgehammer. But the real victims were thousands of consumers who were denied power wheelchairs. One group, Independence through Enforcement of Medicare and Medicaid, emerged as the combined voice of over 70 disability organizations. The man who became the spokesman for ITEM was Henry Claypool. For his bold leadership, statesmanlike style and tenacious advocacy, New Mobility is pleased to honor Henry Claypool as our 2004 Person of the Year.
By Josie Byzek and Tim Gilmer
Henry Claypool, 42, has a passion for freedom and independence, and they are more than mere words. They have tangible roots that go all the way back to Claypool’s birthplace, Fort Collins, Colo., at the foot of the Rockies and all that blue sky.
When Henry was just 6 months old, the Claypools left Fort Collins and moved to subsidized housing in the Denver suburbs. “We were poor,” says Claypool. “My dad was trying to go to school and working and raising a family. I don’t want to make it seem that I’m a product of this hugely difficult time, but I learned how to put the paper products on the bottom of the grocery bag because you can’t pay for those with food stamps. We grew up with not a lot, and that shaped me quite a bit.” Later, his dad, in pursuit of a Ph.D., moved the family to Mar Vista, Calif., where they lived off-campus in UCLA married students housing–31 units in two big complexes that looked like barracks.
“From the second to the seventh grade I was able to ride my bike from the house to the beach,” says Claypool. “As I started to establish my identity, that was how much leash I was given. We were living at Sawtelle and Palms, and I was riding down to Venice Beach. In the early ’70s this wasn’t the most wholesome place for a young lad to go.”
The Claypools returned to the Denver area when Henry was 12. “It was a weird transition,” he says. “I came with long hair and I didn’t fit in very well in suburban Denver. They don’t have hippies there.” Later, when Claypool was admitted to the University of Colorado at Boulder, he still had long hair, but he was less of a rebel hippie type than a young man who had learned to play volleyball on the beach and loved to ski. In 1982, at 19, he injured his spinal cord at the T4 and C5 levels in a skiing accident. As a triplegic wheelchair user navigating the hilly CU campus a decade before ADA implementation, he experienced the need for freedom and independence on a deeper level.
Just before his injury he had started working at Rocky Flats, a munitions plant that manufactured plutonium triggers for atomic bombs. “I didn’t know how I was going to pay for college, so I had to get a job, and Rockwell was a good employer.” After his injury he found the other side of the coin, volunteering at the Rocky Mountain Peace and Justice Center. “I think it was atonement in some way for the fact that I had worked at the plutonium plant,” he says, chuckling.
In the first few years after his accident, he needed two dorsal root entry zone surgeries to get his chronic pain under control, and only then could he consider looking for a job. At the time, he was living in Boulder and using attendants provided by the Center for People with Disabilities.
Nan Hildebrand, director of CPD at the time, was impressed with how well Claypool managed his attendants. “We had a vacancy, and the nurse was pulling her hair out about who could fill it,” recalls Hildebrand. “I suggested Henry, and she said, can we hire a client? I said, why not? He had an excellent system and I thought others seeing him do it would help them see how it was done.” Claypool, a modest man, downplays his early management skills: “My secret to getting good attendants was getting to know them,” he says. “Just talking with them.”
Claypool eventually became director of the attendant services program, but Hildebrand got the sense that working in the disability field was just a job for him. That changed in 1987 when Hildebrand flew alone to an ADAPT action in San Francisco. For her it was like being plugged into a huge power source. “I called Henry and said, you’ve got to come out here! He did, and when we were in a parade, I looked over and he was so full of life,” says Hildebrand. “I think he realized at that moment that it’s not just him, but a world of people with disabilities working together.”
Into the Bowels of Bureaucracy
Claypool discovered his acumen for analyzing and forming policy while chairing the Colorado Governor’s Developmental Disabilities Council from 1993 to 1995. There he helped create the Consortium for Developmental Disabilities Councils, which since has merged with the National Association of Councils on Developmental Disabilities. CDDC is credited with giving developmentally disabled people a stronger voice in the larger organization. This was Claypool’s first success at directly influencing national disability policy.
Claypool also worked for the University of Colorado in Boulder. “They needed to comply with the ADA, and I had been trained in it, so the University asked if I would apply for a job.” He became coordinator of a program, then eventually moved up to become director of disability services. During that time the campus became much more accessible, disabled students were introduced to potential employers, and Claypool even prevailed upon Ed Roberts–“The Father of the Independent Living Movement”–to speak to the student body.
It was Claypool’s relationship with Roberts that caught the eye of Sue Swenson, who was commissioner of the Administration on Developmental Disabilities. “I think of Henry as a guy who can always hold his own, even in a conversation with Ed, and that’s what I wanted,” says Swenson, who lured Claypool away from Colorado’s open spaces to work as her special assistant in Washington, D.C.
Swenson says she considered every advocate in the country before deciding on Claypool. “I wanted someone who could question stuff. We could use a lot more of that in D.C. and on all levels of advocacy. He’s an analyst and at the same time an advocate. And he has a way of doing that that’s not nasty or challenging. That is very powerful. He has the ability to say, ‘Here’s why this does not make sense.'”
Late in 1998 Bob Williams, one of the first presidential appointees with significant disabilities, recommended Claypool to be appointed senior advisor for disability policy in what was then the Health Care Financing Administration (now CMS). “Henry and I soon became quite an effective team,” says Williams.
Claypool’s job was to help streamline HCFA’s programs and, as Nancy-Ann DePerle, former HCFA administrator, put it, “to make sure the voices of disabled people–about 6 million under Medicaid and about 5 million in Medicare–are heard.” That’s a heavy responsibility, one that Claypool found frustrating at times. “You’re really just an advocate, they say. And so they (the bureaucrats) marginalize you on the inside, and then you get marginalized in the disability community because you’re not rootsy enough.” Claypool learned to ignore the marginalization, instead focusing on “the times I was stuck working really long days with Bob Williams to get the Olmstead guidance out. “Williams and Claypool wrote what they hoped would be guidelines requiring each state to at least provide some Medicaid-funded personal assistance.
The landmark Supreme Court ruling in Olmstead v. L.C. and E.W. says if a state has a program supporting people with disabilities to live in institutions and also has a program supporting them to live at home, then the state needs to follow the ADA’s guidelines and support people in the “most integrated setting.” In other words, no one should have to get stuck in a nursing home if they choose not to.
When the Bush administration took over, Claypool’s views on what the states should do diverged from those of his new boss, Tom Scully. “There was a strong belief in the new administration that giving states broad flexibility in how they deliver services would be a good and valid approach, and I strongly disagreed, and still do today,” says Claypool. “The federal government has a vital role, it pays the majority of the costs and should certainly have a role in making sure that some minimum safeguards are adhered to by states spending federal dollars. And so I left the agency and began AIMMM [Advancing Independence: Modernizing Medicare and Medicaid] with Bob Williams.”
The Battle with CMS
Living in D.C. can be suffocating, especially for someone used to wide open spaces. “I can’t see the stars here at night,” says Claypool. “Wherever you go, people have been here for ages. But in Colorado I could drive for miles, and even though the land had changed hands many times, it felt and looked much like when the Cheyenne and the Arapaho were there.” To get back to nature in Washington, D.C., Claypool would get away to the shore in summer and seek out trails to roll on in the winter.
At Advancing Independence, Claypool and Williams got deeply involved with David Jayne and his battle to amend Medicare’s homebound restriction [see “David Jayne Unbound,” January 2003]. This antiquated policy threatened to halt coverage of vital home services for recipients if they left their homes for any but the most restrictive reasons, which in effect made hostages of people with severe disabilities. Jayne, a vent user with ALS, had directly challenged the policy. In 2002, at the 10-year anniversary of the ADA implementation, PBS’ Susan Dentzer interviewed Jayne on the White House steps. Former presidential candidate Bob Dole was there, along with Sen. Ed Markey and other notables. Claypool was among those invited.
Dentzer spoke first with Jayne. Then the program cut away to President Bush. “Today Medicare recipients who are considered homebound may lose coverage if they go to a baseball game–which, of course, I encourage them to do–or meet with a friend or go to a family reunion,” began Bush. “So today I announce we’re clarifying Medicare policy. So people who are considered homebound can occasionally take part in their communities without fear of losing their benefits.”
Claypool, sharp-eared, picked up on the word “occasionally.” When Dentzer turned the microphone to Claypool, he said, “I think we’re most concerned about the Medicare program telling people with significant disabilities when and under what conditions they can leave their home. Fundamentally it’s an issue of freedom, and individuals that receive Medicare home health benefits should be able to determine when and under what circumstances they leave their homes. And from what the President said today, we’re not quite sure that that’s the case.”
Claypool’s private style, more direct, reveals his passion: “The government doesn’t have any business telling me that if I leave my home I’m not going to be able to continue to get services,” he says. “They should be based on my medical needs. This is ludicrous.”
Medicare’s homebound restriction was based on the same kind of outdated language that CMS had been using since 1985, but late in 2003, CMS issued a “clarification” emphasizing that power wheelchair coverage was limited to the claimant’s being strictly nonambulatory. Medicare began denying claims for power wheelchairs right and left, and all hell broke loose in the durable medical equipment industry. Many vendors had no choice but to stop taking unreimbursable orders for power wheelchairs, which meant the consumer was left stranded, in many cases stripped of needed mobility. By this time Claypool and Williams had used Advancing Independence as an organizing tool to form the ITEM coalition, which took the reigns in opposing CMS policy.
Claypool emerged as the voice of ITEM. “Henry was really the engine point of the coalition,” says Cara Bachenheimer, vice president of governmental affairs for Invacare. “He led the charge.” The coalition, made up of more than 70 organizations, represented virtually every major disability organization in the nation. Letters requesting a meeting with HHS Secretary Tommy Thompson were sent out in January and March 2004, but they were never answered.
Did the lack of response anger Claypool? “It made them look worse than it aggravated me,” he says. “If you’re not capable of writing a response, then you’ve got some issues.”
On April 27, 2004, Claypool’s photo appeared in a USA Today article about Medicare fraud in power wheelchair payments and the need for clearer policy. By then, the CMS “clarification,” under pressure from ITEM and others, had been rescinded, but the antiquated in-home language still remained. USA Today brought the story to a wider audience: “[Consumer] advocates say that the growth in wheelchair spending is less about fraud and more about a growing number of [people with disabilities] who need assistance. ‘There’s a tremendous unmet need out there,’ says Henry Claypool, co-director of the advocacy group Advancing Independence.”
The next day, April 28, Claypool appeared before Sen. Charles Grassley’s Finance Committee, his first time testifying before Congress. “I took it very seriously and spent a lot of time working on the remarks–a whole day making sure that I could read them without missing a beat. I wanted to do it right. I was the only one speaking from a wheelchair.”
Claypool began by describing the mission of Advancing Independence and establishing his authority to speak–as a wheelchair user he had been a former Medicare beneficiary. “Developing more effective ways to [curb fraud and abuse] is something that we all support,” he said. “Unfortunately, CMS is acting as if the only way it can combat fraud is to severely limit the benefit in ways that undermine the health, independence and dignity of thousands of beneficiaries of all ages.”
Claypool deftly exposed CMS’ faulty policy–focusing on the restrictive in-home language–using himself as an example: ” It was when I [worked] at HCFA that I obtained my power wheelchair using my private coverage. I did so because I needed it to go to work and because my shoulders would soon wear out from overexertion. Had I been on Medicare at the time, the claim likely would have been rejected because I do not need a power wheelchair to move about the four walls of my home.”
He presented two other examples: An elderly woman with chronic obstructive pulmonary disease required continuous oxygen therapy but lived independently. She could walk a few steps within her home, but shopping and going to doctor’s appointments were beyond her capability. Another woman with MS had symptoms that waxed and waned. Most days she did OK “wall-walking,” at home, but on bad days, going from bedroom to bathroom was a problem. What about outside the home? Both women clearly needed wheelchairs, but CMS policy would force Medicare to deny their claims because they were “ambulatory” within their homes.
Claypool then urged the committee to consider the real issue: “Mr. Chairman, the agency cannot possibly curb fraud and abuse so long as it continues to assume that its major tool in doing so is to enforce a coverage policy that completely ignores the medical and very practical needs of people who use wheelchairs.”
Claypool lives in an apartment in Washington, D.C., enjoys the company of friends, and is “seeing someone.” His private life helps him maintain balance. “The beauty of it is that it’s separate from my professional life.” The woman he’s seeing? “She’s a woman who I love and enjoy spending time with. We went up to Bucks County, above Philadelphia, along the Delaware, and spent Thanksgiving there. She has two kids, and it was her holiday off. It was just beautiful, sitting out there. Cold, but … I think my appreciation for nature is boundless.”
CMS has yet to change its antiquated language–its policy still fails to recognize the right of wheelchair users to live full, independent lives. At times it must seem like a losing battle. What keeps Claypool going? “Having civil rights gives me a framework or a context to work within, and I can see myself as kind of a freedom fighter, and that keeps me going. I have a right to speak out and advocate for these things, and I’m really in touch with them because I live them every day. Who better? Who better to march on Selma than the people that had a reason to march?”
Fighting discrimination is something Claypool does even on vacation, as in his encounter at a cafeteria over Thanksgiving weekend. “I followed the signage into the cafeteria, a busy place, and this employee came up to me and very aggressively said, may I help you, and I said, ‘Yeah, I’m just coming up here to go to the cafeteria.'” The man had confronted Claypool because he assumed he was cutting the line. But Claypool was merely following signs that indicated an inaccessible path of travel if he followed the crowd. “I had to make my point–I felt like I was being accosted by an employee. I didn’t want to be a big pain in the ass, but I wanted him to understand that I was playing by their rules, I followed their sign and it led me to this point, and I wanted to be treated in a more respectful manner.”
Whether testifying before Congress or using a public accommodation, an advocate’s job is never done. Henry Claypool thrives on it. “It’s about not wanting to be treated badly,” he says. “I think it comes down maybe even to a good fight, and I want to fight the good fight.”