Consumers storm Capitol Hill

Sunday, June 30, 2002

WASHINGTON - Each time Donald Taylor rolled into a Congressional representative or senator's office in his high-end, Permobil wheelchair, he told them he was breaking the law by visiting them. Under current law, durable medical equipment can only be used "in the patient's home'to qualify for reimbursement under Medicare Part B.

"I could lose my eligibility for doing this," said Taylor. "It's un-American. This wheelchair is my legs. If I can't use it to come here or to go to work, I'm living in a prison."

Taylor rolled through the corridors of Congressional office buildings last month, accompanied by rehab provider Roger Runkles of Germantown, Pa.-based Roberts Home Medical, as part of AAHomecare's inaugural effort to put a face on home medical equipment. The association believes it needs to enlist the consumers and consumer groups in its fight to halt legislative initiatives such as competitive bidding.

"We haven't been doing enough reaching out to consumers," said AAHomecare CEO Tom Connaughton. "And right now, a couple of issues match up with them perfectly: the 'homebound'definition and competitive bidding. When [our interests] do coincide" we need to take advantage of it.

The advantage this year was six strong, including Taylor. In total, AAHomecare, the half-dozen consumers and dozens of AAHomecare member stalwarts called on 160 Congressional representatives during the association's annual two-day legislative conference.

Having consumers was making a difference, according to Dave Williams, director of government relations for Invacare.

"I've been doing this long enough to know when their eyes are glazing over," said Williams, who sits in a wheelchair himself, but who also had a consumer in a wheelchair with him. "Several times, they came to attention because we were putting a face on home care."

Relaxing the definition of "homebound" wasn't the only issue consumers and providers were lobbying for. Consumers like Taylor and Bren Ewen, another Runkles client, also spoke to representatives and senators of the impact of rolling out competitive bidding nationwide. Mostly, they fear competitive bidding will take away their freedom to choose their provider.

"I firmly believe in life, liberty and the pursuit of happiness," Ewen, a research scientist who sits in a Permobil and uses a ventilator. "Competitive bidding takes away all three because it leaves me no choice."

Taylor and Ewen said they also fear competitive bidding will cut back the quality of service they're accustomed to. Taylor gave an account of having to go to a "low-bid type" provider for his current wheelchair because his provider couldn't get the chair reimbursed by Medicare. The provider circumvented the rules to get him the chair, but when he needed service, the provider was no where to be found. Taylor had to return to his provider and pay $500 out of pocket for repairs.

"We need special needs, and special needs can't be met by competitive bidding," Taylor said. "The service won't be there."

Putting a face on home care wasn't always easy for Taylor and Ewen. It was hot and humid the day consumers and providers stormed Capital Hill, and travelling back and forth from the Congressional office buildings was sometimes difficult. Taylor and Ewen were forced to take their wheelchairs to the road for some 100 feet, for instance, because the sidewalk in front of one of the offices they needed to enter didn't have a cut-in where they had crossed the street. More often than not, consumers and providers met with aides and not the representative or senator themselves, which they sometimes found discouraging.

But it was all worth it, if as Christopher Kush, a consultant hired by AAHomecare to set up the appointments with representatives and senators, said, "They'll fight for one little girl more than they will for all the diseases out there.

"Leave your consumers in the office," Kush told providers before sending them off to storm Capitol Hill.

They did.

Runkles said, "Now they can really see what's going on in these people's lives. And how their decisions affect their lives." HME