SUSAN DENTZER: Like many patients with amyotrophic lateral sclerosis-- also called ALS or Lou Gehrig's Disease-- 41- year-old David Jayne sometimes feels imprisoned in a useless body. He describes the sensation as he speaks through a high-tech speech synthesizer, which he controls by raising his eyebrows.
DAVID JAYNE: This hideous disease has progressed to the point that I can only move two fingers, and they are failing, turn my head, and slightly move my left knee. It requires two people, two hours to get me out of bed, showered, and dressed for the day.
SUSAN DENTZER: Jayne says the effort is worth it, if only to allow him the occasional trip away from home with his two children, Hannah and Hunter. Jayne and the children's mother are divorced.
DAVID JAYNE: I dearly want their memories to be of vacations and fun, and not of their father confined to home.
SUSAN DENTZER: Today David Jayne got his wish, thanks in part to President Bush. On the 12th anniversary of the enactment of the Americans with Disabilities Act, Bush announced a modification in a Medicare restriction that has kept many people like Jayne mostly confined to their homes.
PRESIDENT GEORGE W. 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. 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.
SUSAN DENTZER: Although David Jayne wasn't on hand to celebrate, disability activists said the victory was clearly his, experts said. Ruben King-Shaw is deputy administrator of the agency that oversees the federal Medicare program.
RUBEN KING-SHAW: He has brought the nation to refocus on an issue that, you know, that perhaps hadn't gotten the right kind of attention for the right amount of time.
SUSAN DENTZER: Jayne's medical care is largely paid for by Medicare, the federal health insurance program for the aged and disabled. His coverage includes regular home care visits by a skilled nurse to change his breathing and feeding tubes, and daily help from a home health aide for his morning routine.
But until today, Jayne could not legally qualify for these Medicare home health benefits unless he was homebound. He and others in his condition could only leave home to obtain medical care or to attend religious services. Jayne challenged this homebound restriction on several occasions, with unfortunate results. One time was in the fall of 2000, when he attended a University of Georgia football game with an old college friend.
DAVID JAYNE: This was the first time in over three years I had left my home overnight except hospital stays. The trip was difficult, but wonderful. I had not felt that alive in years.
SUSAN DENTZER: But after an article about Jayne appeared in a local newspaper and mentioned the away-from-home trip, Jayne's home health care provider cut off services to him. Only with the help of Jayne's Congressman were the services restored. So Jayne subsequently launched a grassroots lobbying effort to persuade the government to loosen up on the homebound restriction for roughly 50,000 Americans like him. They have a range of neurological or muscular diseases that are life- threatening or terminal, including advanced multiple sclerosis or severe spinal cord injuries. Jayne says he's collected 17,000 signatures on a petition drive to lift Medicare's homebound restriction. From his home in Georgia, he has made several arduous trips to Capitol Hill to make his case to lawmakers.
REP. ED MARKEY: So who have you visited so far today?
SUSAN DENTZER: Among those he met with was Massachusetts Democratic Representative Ed Markey, who had sponsored a bill to change the law.
REP. ED MARKEY: One of the goals we have in America is to keep people out of hospitals. The way we can do that is to give families a little more home health care benefit so that they can keep their loved one at home. The reality is that the families would like to keep them in home, those with the serious illnesses, but still to take them out to church or to synagogue, take them out walking around the supermarket, or wheel them up and down the streets of their community.
ROBERT DOLE: This is Joanne. She's been one of our volunteers.
SPOKESPERSON: How are you?
SUSAN DENTZER: Jayne also gained a powerful ally in former Republican Kansas Senator Bob Dole. Dole, who lost the use of his right arm following a World War II injury, is now honorary chair of Jayne's coalition. He spoke last week at a Capitol Hill news conference.
ROBERT DOLE: And you know, this morning I've been having a little trouble with my button because I've been having trouble with my left arm, and I was thinking, "gee, this is going to be a terrible day." But then I thought of who I was going to see today, and so I thought, well, I don't have many problems.
SUSAN DENTZER: Experts say the homebound restriction points up an even larger problem: Inadequate systems of providing and paying for chronic, long-term care. Bruce Vladeck is a former government official who oversaw the Medicare program during the Clinton Administration.
BRUCE VLADECK, Professor of Geriatric & Health Policy, Mt. Sinai School of Medicine: The Medicare home care benefit was originally conceived, and for some people still serves as a very targeted narrow short-term benefit to assist people who have just been hospitalized, and in fact, to make it possible to discharge them from the hospital more quickly and to continue the course of treatment.
SUSAN DENTZER: In that context, Vladeck says, the homebound restriction on home care used to make sense. Only people truly confined to home could qualify for in-home services. For others who were well enough to leave home, it was far more economical to provide services in hospitals or doctors' offices. But now times have changed, says Ruben King-Shaw.
RUBEN KING-SHAW: You now have more of a chronic condition of homeboundness, if you will. And so, the benefit is still designed for a short-term clinical condition. The reality is you have many, many people who have a chronic or long-term situation where they will need those services brought to the home to have a healthy and productive life.
SUSAN DENTZER: And advances in technology are only driving up the need for those services. Thanks to state-of-the-art medical care, people like David Jayne are living far longer after their terminal diseases are diagnosed. Meanwhile, because of motorized wheelchairs and other technologies, they're more able and eager than ever to have a life outside the home.
As a result, there's been only one powerful argument against changing the homebound restriction: The potential cost. Medicare now spends roughly $13 billion a year on home care, an amount that Congress has squeezed down on sharply in recent years. If the homebound restriction were loosened substantially for people like David Jayne, Congressional budget scorekeepers fear that far more people would use home care services. They've estimated that could drive up the costs by about $1.5 billion over a decade. Backers of the change like Congressman Markey dismiss that argument.
REP. ED MARKEY: I contend that it will cost nothing, because there is no one who is now going to say they have Alzheimer's or Parkinson's or they have ALS or some other disabling disease just so they can have someone come into their home for an hour a day to have them... bathe them, or feed them.
SUSAN DENTZER: Disability activists at the White House today said the President's announcement was a small first step in the right step. Henry Claypool is with an organization that seeks to modernize Medicare and Medicaid.
HENRY CLAYPOOL, Advancing Independence: 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.
BRUCE VLADECK: It helps around the edges. It helps David and it helps people like David. There are thousands of them. But there are millions of other people out there who might or might not benefit from Medicare home care services. And who are going to remain in... and the number, of course, is growing all the time. We have greater and greater capability to increase the number of folks with chronic illnesses in our community who are alive, but we have not kept up at all in our capacity to serve them.
SUSAN DENTZER: But thanks to David Jayne, perhaps the nation is at last making a start.