Medicare's homebound restriction robs people with disabilities who use home health services of the chance to participate freely in their communities. David Jayne, whose battle with amyotrophic lateral sclerosis makes necessary such services, has become the leading advocate and spokesperson for exposing and changing this outdated policy that imprisons thousands in their own homes. In recognition of his tenacity and unswerving commitment to overturn Medicare's homebound restriction, New Mobility is proud to name David Jayne as our 2002 Person of the Year.
David Jayne wants to get one thing straight about ALS: "The decline into paralysis is nothing short of pure hell," he says. "Everything begins to fail, everything becomes a memory, including most friends. Many cannot cross the bridge from nondisabled to disabled with you. This disease overwhelms all that it touches." Jayne, 40, has lived with ALS since 1987.
ALS, also known as Lou Gehrig's disease, attacks nerve cells in the brain and spinal cord, eventually destroying the motor neurons that connect the spinal cord to the body's muscles. Without the motor neurons, the brain can't tell the body's muscles what to do, so the muscles gradually waste away and movement is lost.
Eventually people with ALS become completely paralyzed, losing all use of their hands, arms, legs and neck muscles. Speaking and swallowing become difficult for some and impossible for others. Some, like Jayne, choose to use both a feeding tube and a communication device. Within three to five years of diagnosis the diaphragm muscles that control breathing begin to fail. For most people with ALS, the eventual choice is between a ventilator or death, which most often occurs within six years of diagnosis.
Only 5 to 10 percent choose the vent.
In 1994, seven years after being diagnosed, Jayne started using a BiPap machine to help him breathe at night, which worked for a few years. By 1997 Jayne started waking up gasping for air. "One particular time I am sure I came very close to death," said Jayne in a posting to the Turning Points in ALS Web site (www.tpals.org). "I was dreaming and in my dream a dear friend of mine was shaking me and shouting, 'BREATHE! BREATHE!' I awoke from the dream gasping for breath and I was chilled with uncontrollable shakes."
Not long after that dream, Jayne decided it was time to vent, but his wife did not agree. He stayed in the hospital a few days after the procedure, mainly so his caregivers could get used to all the new equipment and supplies. Going back home was tough at first. He needed a lot of suctioning and his caregivers were uptight around him. For a little while he even questioned his decision.
But then the vent maintenance became routine and he gained much more energy from the increased oxygen. His kids were the first to notice. "My children asked me different questions," he wrote in the TPALS post. "Hunter asked me if I would be able to get out of bed and go outside and play. Hannah asked me if I would make it to her softball game. I am extremely happy to report I did both." He says his daughter was already at the ballpark when he arrived. "When her eyes met mine and [I saw] the huge smile that was on her face, I knew in my heart that I had made the right decision," Jayne wrote. In fact, Jayne had so much energy from using the vent that he even started his own listserv, called People with ALS, or PALS.
Pushed to the Brink
His wife never did agree with his decision to use the vent and soon his marriage became strained. "I contacted my home health company and requested a psychologist," says Jayne. He told the psychologist that he wouldn't be available one morning because he'd be at the funeral of a friend who succumbed to ALS. At the time, he wasn't aware of a strict Medicare regulation that said he must be "homebound" in order to receive home health services, meaning if he leaves his home for reasons other than a doctor's visit, a church service or adult day care, then his home health services might be canceled [see sidebar, page 34]. "Instead of the psychologist helping to reduce the stress on my marriage, she began the discharge process for homebound violations," says Jayne. "I attended the funeral and my home health services were discontinued." That was the first time Jayne's services were cut because he illegally left his house.
He won his services back from Healthfield Home Health with help from the Georgia Advocacy Office. It didn't take the advocates too long, just a bit of lawyerly bluff, but the experience of being betrayed and trapped at home by a program that could have increased his independence infuriated Jayne. "As time passed I grew increasingly bitter being forced under house arrest and missing out on my children's activities, especially vacations."
The stress on his marriage increased. Soon it was shattered beyond repair. "My wife left me without notice," he says. "She was my primary caretaker. I was devastated over the loss of my precious children in my daily life."
Stripped of his wife and the everyday presence of his children, Jayne sobbed himself to sleep at night, unsure whether he wanted to go on. It would have been so easy to just let go ... to ask someone to disconnect the vent.
But letting go isn't Jayne's way. Pushing through, finding solutions--that's what he always did in the past, and he knew that's what he had to do now.
It Takes a Community
Suzie Cowan has known Jayne since 1983, four years before he was diagnosed with ALS. "He was a very strong and masculine man, an avid hunter and fisherman, he loved the outdoors," she says. "And he was successful in the business world." At 27, Jayne was a stockbroker who just bought a new house in Decatur, Ga., where he thought he'd raise a family together with his new wife.
Jayne gathers with family and congressional supporters following his May 16,2001, speech in support of the Homebound Clarification Act.
Cowan was the first friend Jayne called for help when his wife left him. She flew down to Georgia from Memphis, Tenn., to see what she could do for him. "I read an article on his listserv about a book called, Share the Care. I just felt this was a system that could help when I knew his life was falling apart. We had to get him involved with people." The idea behind Share the Care is to build a group of people who commit to providing assistance for a person with a disability. Each person provides assistance for a short period of time, like maybe two hours every three months.
With Cowan's support, Jayne began to build his care group by programming a plea for help in his communicator and calling a meeting at his church, Saint James the Apostle. "When he asked the church for help, it's almost like he had lost everything he was going to lose. The only thing left to lose now is his finger for communication, and his life," says Cowan.
Debbie Weiher, assistant director of religious education at Saint James, says she remembers when Jayne and his wife would come to church together. Like most others in the congregation, she never reached out to them. "He was one of those people who are disabled and ... we were put off by his machinery. We didn't know how to approach him," she says. But then came the Sunday almost three years ago when, alone, he powered his chair to the front of the congregation. "He very humbly said he needed help. Once he did that, I thought, oh cool, so we can touch his hand or kiss him on the cheek. We're not going to break him, this person in the middle of all that machinery."
Weiher and her husband, along with over 50 other members of the congregation and eventually members of the wider community, signed up to be part of Jayne's care team, called his Circle of Friends. "Volunteers get him groceries, do lawn work, go to the pharmacy, drive him back and forth. Suzie coordinates the calendar every quarter and flies down to be with him a couple of times a year," she says. At the Circle's annual Christmas party, held at Jayne's house in Rex, Ga., the friends sing carols by the fireplace, put up decorations and do other family stuff. "It's a bigger party every year," says Weiher.
Jayne's a big Georgia Bulldogs fan, but Weiher's family roots for the Tennessee Volunteers. "So my husband, my daughter and my son, we're sure to wear our orange, and he'll joke--'Don't come over here if you're wearing your orange.'"
She's there sometimes when Jayne's children come to visit. "He goes to Hunter's Boy Scout meetings when he can and he went to a father-daughter dance about six months ago to dance with Hannah. He helps them with their homework, normal dad stuff."
In addition to his Circle, Jayne has a live-in assistant, Rose Delisser, who has worked with him for years. "They have such a bond," says Weiher. "She can just look at his eyes and know if he wants his fingers on his sensors." Jayne can't lift his hand and he communicates via sensors attached to his computer or communication device. Jayne's home health agency also sends someone to help him shower four times a week.
It may sound like Jayne receives a lot of services, but since he is a vent user and is totally paralyzed except for some movement in three of his fingers, the amount of services he needs to stay in his own home is substantially more than Delisser and Medicare together provide. He might be able to maintain his freedom with the formal services he receives, but he wouldn't be nearly as independent if it weren't for his Circle. Also, his Circle provides more than rides or groceries--it allows him to be a valued part of a community.
Weiher says being friends with Jayne has taught her family so much about what it's like to have a disability. "Now, me and my children know not to stare haphazardly at people in wheelchairs. He helped us bridge that. ... Well, my kids are more open to reach out to people with disabilities. It's great to accomplish something like that with your children, teach compassion." Weiher has come a long way from the Sundays she sat unable to approach Jayne and his wife when they still attended Saint James together.
Issuing the Challenge
The first time Healthfield Home Health discontinued Jayne's services, Jayne contented himself with just forcing the service to be restored. Betrayed by a psychologist and saddled with a crumbling marriage, he was in no position to challenge the system that allowed his services to be cut off in the first place. By the year 2000, though, Jayne's situation had changed. He now was surrounded by over 50 people who supported him, many of whom had become good friends, and he decided it was time to find a way to fix the Medicare homebound regulation that threatened not only his freedom, but the freedom of thousands of others in similar circumstances.
National ADAPT organizer and prominent Georgia advocate Mark Johnson remembers when Jayne first asked him for advice on how to fight against the homebound rule. "He'd say, 'Who should I talk to?'--and I always say, 'Advocacy isn't rocket science.'" Specifically, Johnson told Jayne that the best way to create longstanding change in the South is to go public and tell your story. "It's not someone telling the story about someone," says Johnson. "It's someone agreeing to be in a fishbowl. "
Jayne heeded Johnson's words and kept a lookout for a way to model the problem. The fishbowl came to him in November 2000, when the Atlanta Journal-Constitution asked if it could do a story about Jayne's life.
Called "The Tinman's Heart," the AJC's extensive look into Jayne's life told readers about a recent trip Jayne took to watch his Bulldogs play and the ALS awareness speeches he regularly gives. Healthfield officials read the article and immediately canceled Jayne's four-times-weekly shower visits. Jayne e-mailed the AJC that his services were cut and the AJC responded by publishing a second article about Jayne, this one focusing on how a football game and inspirational speeches cost Jayne his four showers a week.
"I knew going public with my activities would cause me to be discharged again, but I wanted this punitive restriction exposed," says Jayne. "Fortunately, my situation played out on the front page of the newspaper and quickly spread through the disability community nationally." Jayne also contacted his U.S. representative, Republican Mac Collins, who successfully exerted pressure on Healthfield to restore Jayne's shower visits.
As his story spread across the nation, Jayne began to receive thousands of encouraging e-mails, and the stories of others in the same predicament were shared with him as well. Two of those stories still haunt him; both involve women with severe disabilities who each lost a child. One of the women chose to attend her child's funeral service and the other stayed home for fear of being discharged. The one who stayed home was wise to do so--the woman who attended her child's funeral lost her services and, subsequently, her appeal.
Building a Movement
Jayne purposefully risked his own services in order to challenge a regulation that unfairly imprisons thousands in their own homes--and he's jeopardized his services many times since. Johnson recalls Jayne's attendance at a disability rights rally at Georgia's state capitol. "He had a big fluorescent sign on the back of his chair that said something like, 'If Medicare Knew I was Doing This I'd be Discharged.' It was classic ... right in front of our governor."
More importantly, Jayne helped start the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Illness, a group that works with lawmakers and policymakers. "Having no advocacy experience, it has been like the movie Field of Dreams and the line, 'Build it and they will come,'" says Jayne. "I co-founded the NCAHB and many very talented people have offered their assistance."
His services were cut and restored in late 2000, and by early 2001 Jayne had a petition to abolish the homebound restriction posted on the Web (www.petitionon line.com/abolish1/petition.html). It wasn't long until his brand-new advocacy group had its own Web site (www.amendhome boundpolicy.homestead.com). By springtime Jayne had successfully lobbied Rep. Edward Markey, D-Mass., to co-sponsor the Homebound Clarification Act, HR 1490. With the help of a forklift, Jayne boarded a plane to Washington, D.C., and spoke at the May 16, 2001, Congressional Briefing on the bill. His own representative, Collins, also spoke on the bill's behalf.
By chance, while at the Reagan National Airport in Washington, D.C., Jayne met former Sen. Bob Dole. Dole wanted to know what would compel a man attached to life support equipment to travel by air. Through his communicator, Jayne told Dole his story--he traveled to Washington, D.C., from his home in Rex, Ga., with the help of many of his friends so he could meet with legislators face-to-face and inform them of how unjust the homebound rule is to people like himself. Of course, he also told Dole about the impending legislation.
Dole kept in touch with Jayne and is now the honorary chairman of NCAHB. In early July 2002 Dole wrote a widely published op-ed piece, "Disabled Imprisoned by Medicare Regulations." In the article, Dole urged both the House of Representatives and the Senate to work with Jayne. "Make no mistake," wrote Dole. "David Jayne is a prisoner. ... His illness has robbed him of the ability to do anything without the aid of technology. Medicare shouldn't act as jailer too."
Also in July, President Bush announced a very limited homebound policy modification as part of his New Freedom Initiative. "Bush threw some crumbs his way," says Johnson. "There were some people that were kind of thinking David was going to accept it and run, but he wrote me an e-mail saying, 'I didn't know the federal government was into rationing freedom.' Even though the homebound regulation still hasn't been changed, Jayne's done a lot with a little. He's not one of these guys who have a hidden agenda or an ego."
A different Medicare bill than the one NCAHB supports passed through the House last summer without changing the homebound requirement. Unfazed, Jayne worked with Sen. Susan Collins to craft the "David Jayne Medicare Homebound Modernization Act of 2002"--an amendment to that bill.
One obstacle any homebound amendment legislation faces is that the Congressional Budget Office says such changes in policy would be too expensive. The CBO analyzes each bill introduced into Congress to see how much implementation might cost. For bills relating to Medicare, the CBO asks for the opinion of the Center for Medicare and Medicaid Services. The Center told the CBO that loosening the homebound regulation would change the program from a relatively short-term service into a long-term care provider. Jayne takes issue with that assessment. "We obviously do not agree and know accurate data will prove the homebound legislation is neutral," he says.
So the wall Jayne's movement must now scale is the fear of key policymakers that the homebound legislation would explode the Medicare budget. Jayne is confident this wall will be scaled, too. He has confronted more substantial walls before and has always found a way over them. And besides, if he doesn't get to be the one who scales this wall, the movement will not die. Under his leadership, the NCAHB went from a simple petition posted on the Web in early 2001 to an advocacy group with approximately 14,000 individual members and 47 organizational supporters. The movement he built and spearheads would continue on beyond him to victory.
Despite divorce and advancement of his ALS, Jayne remains very involved in the lives of his children. Says close friend Debbie Weiher, "He helps them with their homework, normal dad stuff."
Whatever It Takes
Jayne wakes around 5:30 a.m. and turns his computer on with a button Velcro'd to his finger. "Since my communication is limited to slow typing, e-mail is my method of choice," he says. He spends hours each morning laboriously reading and sending e-mails.
Soon his fingers will become paralyzed and he won't be able to type anymore. As usual, he's prepared for the inevitable. On Nov. 8 he had surgery to implant electrodes in his brain. He hopes that his brain's neural signals will activate a switch that, in turn, will allow him computer access when he can no longer move his fingers.
It may seem drastic--living totally connected to machines, unable to breathe, eat or communicate without some man-made device facilitating the action, but Jayne says he's not done living. "I honestly do not know what keeps me pushing forward, but I will never give up on anything or any goal ... I am hardheaded as the day is long," he says. Not long after he was diagnosed with ALS, Jayne says he decided that "I had children to raise, life to live, and ALS was not going to take my life."