Person of the Year: Henry Claypool
Person of the Year: Henry Claypool
The man who became the spokesman for ITEM was Henry Claypool
bold leadership, statesmanlike style and tenacious advocacy, New Mobility
is pleased to honor Henry Claypool
as our 2004 Person of the Year.
, 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.
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.
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
"It was a weird transition," he
"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
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.
Nan Hildebrand, director of CPD at the time, was impressed with how well Claypool managed his attendants.
"I suggested Henry
, and she
said, can we hire a client?
I said, why not?
had an excellent system and I thought others seeing him do it would help them see how it was done.
, a modest man, downplays his
early management skills: "My secret to getting good attendants was getting to know them," he
"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.
"I called Henry
and said, you've got to come out here!
acumen for analyzing and forming policy while chairing the Colorado Governor's Developmental Disabilities Council
from 1993 to 1995.
helped create the Consortium for Developmental Disabilities Councils
, which since has merged with the National Association of Councils on Developmental Disabilities
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.
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.
"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.
and I soon became quite an effective team," says Williams.
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.
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.
"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
"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
and Williams got deeply involved with David Jayne and his battle to amend Medicare's homebound restriction [see "David Jayne Unbound," January 2003].
was among those invited.
, sharp-eared, picked up on the word "occasionally.
When Dentzer turned the microphone to Claypool
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.
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.
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.
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.
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
"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."
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.
then urged the committee to consider the real issue: "Mr.
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
was cutting the line.
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.
thrives on it.
"It's about not wanting to be treated badly," he