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CNN Saturday Morning News
Man With Lou Gehrig's Disease Fights for Right to Leave Home
Aired May 18, 2002 - 07:27 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
MILES O'BRIEN, CNN ANCHOR: This is the story of David Jayne, a man who has what is commonly known as Lou Gehrig's disease. That's bad enough. But as CNN's Kathleen Koch reports, some terribly difficult laws make it even more difficult for him to stay at home.
(BEGIN VIDEOTAPE)
KATHLEEN KOCH, CNN CORRESPONDENT (voice-over): It is a charming home in the Atlanta suburbs, but David Jayne, suffering from ALS, Lou Gehrig's disease, has been struggling for more than a year for the right to leave his home when he chooses.
Under current Medicare rules, he and other patients who are provided home health care aides can lose that coverage if they leave for anything other than adult day care, medical care, or attending religious services.
David, who can't move, breathe, or speak on his own, has come to Washington for the second year in a row to fight for change.
DAVID JAYNE, ALS SUFFERER: This restriction forces individuals like myself to be under house arrest or be a cheat and a liar by leaving.
KOCH: David has made a strong impression on lawmakers.
UNIDENTIFIED MALE: Working (UNINTELLIGIBLE) hard on the funding, right? And the language?
JAYNE: Yes, sir.
UNIDENTIFIED MALE: I like that.
He uses that computer (UNINTELLIGIBLE) gets his message out. That's good.
JAYNE: Doing my best.
UNIDENTIFIED MALE: Yes, you do a good job, David, you sure do.
KOCH: He's gotten a bill introduced in both the House and Senate to remove restrictions on how often homebound patients can leave their residences or where they can go. REP. ED MARKEY (D), MASSACHUSETTS: This is one of the last barriers that basically assumes that people have to be homebound, can never leave their house if they're going to receive any help, and that's just wrong.
KOCH: A powerful former senator has also taken up David's cause.
BOB DOLE, FORMER SENATE MAJORITY LEADER: This is an extreme case that should be corrected, and there are thousands more like David Jayne.
KOCH: Medicare officials admit their definition of who qualifies for home health care needs updating.
RUBEN KING-SHAW, CENTER FOR MEDICARE AND MEDICAID SERVICES: It is true that we need to look at our definitions. We need to refocus our efforts and be more responsive.
KOCH: For now, the restrictions remain, meaning David could lose his care for coming to Washington. But he says he won't give up because so many, including his own children, are relying on him.
JAYNE: I desperately want my children to have memories with their father of vacations and fun, not of me consigned to home.
KOCH: Kathleen Koch, CNN, Washington.
(END VIDEOTAPE)
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