David Jayne Is New Mobility's Person of
David Jayne, imprisoned by ALS, is fighting the
Medicare homebound rule that says he must be a prisoner in his
home to receive support services.
New Mobility January 2003 Issue, by Josie Byzek
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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outdated policy that imprisons thousands in their own homes.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.
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.
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.
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.'"
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
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.
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
It wasn't long
until his brand-new advocacy group had its own Web site.
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
... 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.
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
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."