It Takes a Village to Fight the System

by Christina Medvescek on Mon, 2002-09-02 17:00

When David Jayne took up his sword against Medicare two years ago, it wasn't a solitary fight. The support and backing of the members of his Circle of Friends care team, and the organization he founded, National Coalition to Amend the Homebound Restriction (NCAHB), made his crusade possible.

David Jayne
A forklift hoists David Jayne into a private jet for a lobbying trip to Washington, D.C.

Since May 2001, Jayne, 41, has made three week-long trips from his Atlanta home to Washington to lobby for legislation lifting restrictions that keep people who receive Medicare home nursing services from leaving their homes (see "Medicare Homebound Restriction"). Each trip involved a mountain of detailed planning and scheduling by Jayne, family and friends, his live-in caregiver and his volunteer care team organized by Suzie Cowan of Germantown, Tenn.

Planning and moving

"To even board the plane for the trip, David has to be loaded and unloaded into a jet through the rear door via a forklift," Cowan explains. Jayne, who has had ALS for 14 years, can move two fingers, needs a ventilator for breathing and speaks through a voice synthesizer. He travels by donated private jet because his equipment makes commercial air travel impossible.

Fund raising is another hurdle, with each trip costing about $6,000. For the first two trips, Cowan got hotels to donate rooms, an Atlanta aviation company donated the flights and Jayne's supporters rented an accessible van. The third trip, during the week of July 22, was a rush event due to impending Senate action, and was funded by "lobbyist organizations, advocacy groups, patient groups and personal donations," Jayne says.

Once in D.C., Jayne relied on two traveling caregivers to get him through his marathon days. "For David to get to a 9 a.m. meeting on The Hill with a senator, we would wake up at 4 a.m. and begin the daily process of getting him out of bed, bathed, dressed and ready for the day," says Cowan, who made two trips with Jayne. A glitch in the morning routine has meant a missed meeting.

Personal appearances

Jayne spent his days in Washington traveling between government offices, interviews with the press and meetings with people who could introduce him to other people. For the most part, he was well received. His physical presence alone carried a big message about the difficulties — and abilities — of people with ALS.

Once, while giving a speech to a roomful of legislators, his finger "stopped working" and couldn't operate the voice synthesizer. There was a long silence, Cowan recalls. "David was so cool, calm and collected and finally his finger just started working again. The awesome thing was that no one said a word. Everyone just waited for David to resume his speech."

Jayne, who retired from Domino's Pizza as a financial consultant, calls himself "just a good ole boy made angry by an outdated government policy.

"I'm not certain if it is a blessing or a curse that I am extremely hardheaded," he adds. "But success was the only end imagined.

"The first elected official I ever met with was my congressman in his district office. After 20 minutes of discussion he said, 'I can tell you're not going to take no for an answer.' Then he phoned Washington and cosponsored the legislation."

Broken promises

Other political encounters have been less luminous.

Jayne recalls, "The most demoralizing time was when I listened to an all-night committee session during Medicare markup, when Congressman (Ed) Markey (D-Mass.) offered the 'David Jayne Amendment.' Chairman (Billy) Tauzin (R-La.) promised Mr. Markey that if he would withdraw the amendment, the committee would work with Congressman Markey to include homebound language in the bill. This was an empty promise."

The committee never worked with Markey and drafted inadequate language that was later passed by the U.S. House of Representatives (see "U.S. House Waters Down Amendment," August 2002). Jayne adds, "As a lifelong Republican, my party really let me down."

Circle of support

David Jayne and Suzie Cowan
David Jayne and Suzie Cowan

On the plus side have been the people who rallied around to make the effort possible. Jayne has more than 80 people in his Circle of Friends, which was organized through his church two years ago after his wife divorced him. (Cowan structured the team based on the book Share the Care by Cappy Capossela and Sheila Warnock.)

When Jayne's fingers began to fail this spring, the Circle raised funds for an Eyegaze communication system because, Cowan says, "We never want David to be without communication!"

Jayne also credits the co-founders of NCAHB, lobbyists, legislators and former Senator Robert Dole, whom he happened to meet while waiting for a plane and who signed on as honorary chairman of NCAHB.

"They've all given 110 percent," Jayne says. "Though not successful yet, I've learned the tremendous power of a grassroots effort."

Keeping hope alive

Still on Jayne's agenda is legislative success for homebound reform.

And then, "Medicare must recognize and address the population of long-term home health beneficiaries," he charges. "Through advancements in technology and medicine, this long-term population, which includes people with ALS, is growing. We must fight to preserve current services and work for more."

Although he concedes that during the two years he has spent on this effort his health has declined considerably, he adds, "I would much rather attempt to make a difference than lie in bed waiting to die."

To others with ALS who yearn to take up their swords and fight for their own causes, he says, "Remember, anything is possible. Do not be afraid to ask for help. Keep hope alive. Tomorrow will be a better day."

Christina Medvescek
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