Ventilator patients forced to leave state to get care they need

By Scott Finn
Staff writer

MARIETTA, Ohio — Two years ago, Michelle Jones was given two options: Move
to an out-of-state nursing home or die.

Jones, the mother of five young children, suffers from a rare form of
muscular dystrophy. In October 2002, a fire destroyed her Clendenin home,
and her health began to deteriorate. Soon she required a ventilator to help
her breathe.

But the state of West Virginia won’t pay for long-term ventilator care.
Patients such as Jones are exiled, forced to leave the state to survive.

She moved 100 miles away to The Arbors, a nursing home in Marietta, Ohio.
Her children live with a family member in Kanawha County. If she’s lucky,
she sees them once or twice a month.

How would her life change if she lived in Charleston? One day last month,
she struggled to answer that question. She mouthed the words because she can
no longer speak.

“I would see my children every day,” she said, as her eyes filled with
tears.

On that day, all 12 patients in Jones’ ventilator unit were from West
Virginia, according to nursing staff.

No one knows how many people have been sent to other states. One facility,
Select Specialty Hospital of Charleston, has referred more than 15 people in
the last three years to out-of-state nursing homes, according to company CEO
Louis Rowe.

Those patients went to nursing homes as far away as Dayton, Ohio, (three
hours from Charleston) and Dufford, Va. (four hours away).

The state Department of Health and Human Resources doesn’t know how many
ventilator patients have left the state. West Virginia’s Medicaid program
doesn’t pay for out-of-state nursing home care, so the agency doesn’t keep
track of those residents.

Instead, they become the responsibility of taxpayers in the state where they
move. It’s a perverse incentive to export our most fragile citizens, said
Ken Ervin, a disabilities advocate.

“West Virginia finds these people too expensive to care for, so they are
being deported to other states,” Ervin said. “That’s outrageous.”

‘I don’t exist anymore’

Joan Weldon does not need to live in a nursing home. That’s the advice of
her doctors, nursing home staff and advocates like Ervin.

Instead, she lives at The Arbors. State officials will not pay for someone
to stay with her in her home for eight hours a day, so she was forced to
move into a nursing home.

“I don’t exist anymore to them, do I?” she asked a visitor last month.

Weldon, 46, has been in a wheelchair since she was a small child. Until
January 2004, she lived in her Ravenswood home and helped take care of her
78-year-old mother. Then she caught pneumonia and was placed on a
ventilator.

When Weldon recovered, the staff at Select Specialty Hospital tried to wean
her completely from the ventilator, but they couldn’t. She needed the
ventilator while she slept, but could survive without it during the day.

Hospital staff prepared to send her home. But Weldon’s mother is too frail
to monitor her while she sleeps. And the state Medicaid program, which
provides health care for disabled people, refused to hire someone.

Weldon had no choice but to move into The Arbors. Almost immediately, she
became an Ohio resident. That state’s Medicaid program now pays for her
care.

With Ervin’s help, Weldon filed a civil rights challenge against West
Virginia. It is still pending. She says taxpayers spend about $75,000 a year
for her to live in a nursing home when she could live in her own home for
half as much.

Of course, she doesn’t cost West Virginia a penny. And West Virginia
officials decide whether she can go home.

Weldon tries to make a life for herself surrounded by people as much as
twice her age. She spends her days helping disabled people and others learn
to make Web pages. She is trying to find video cameras for Jones, so she can
send and receive pictures of her children over the Internet.

Weldon said she misses her mother, and worries if she also will end up in a
nursing home without her help.

“I just want to go home. It should be a simple thing, but they’re making it
hard to do,” she said.

Awful decisions to be made

Weldon and Jones live at The Arbors in large part because of a bill passed
by the state Legislature in 1993.

The bill says that nursing homes cannot add ventilator beds unless the
additional beds create “no additional fiscal burden on the state.”

The bill was sponsored by former Delegate Pat White, D-Putnam, and Delegates
H.K. White, D-Mingo, and Gil White, R-Ohio. At the time, Gil White said it
would save the state $10 million.

Pat White runs West Virginia Health Right, a Charleston health clinic for
low-income people. She says lawmakers were dealing with some tough choices
at the time, like having to cut people from the Medicaid program or end
preventive services to mothers and young children.

“We were trying to deal with limited funds for Medicaid, and it’s even worse
today than it was back then,” White said.

She doesn’t have a good solution for Jones, Weldon and others who must leave
the state for care. “It’s a hard situation,” she said.

Nancy Atkins, state Medicaid commissioner, said, “I wish West Virginia had
the resources to take care of everybody who needs help, but we don’t.”

The flow isn’t just out of West Virginia, Atkins said. She recently met a
woman who moved here to take advantage of the state’s program for mentally
retarded children.

State Secretary of Health and Human Services Martha Yeager Walker said Ohio
is a wealthier state and can afford to take care of ventilator patients in
nursing homes.

West Virginia already is cutting $116 million from its Medicaid program this
year, she said, adjusted for medical inflation and including cuts in federal
reimbursement rates.

“You look at the choices you have to make and how do you serve the highest
number of people,” she said. “These are awful decisions to be made.”

When first contacted, Ohio Medicaid officials said they didn’t think Ohio
was paying for long-term care for former West Virginia residents. Later,
they acknowledged that Ohio Medicaid was covering their costs.

Ohio officials must provide Medicaid services to all state residents who
qualify, including those who move there from West Virginia, said Harry Saxe,
who leads the Bureau of Long Term Care Facilities for Ohio’s Medicaid
program.

When West Virginia patients come across the border, Ohio officials are put
in a terrible position, said Catherine Turcer of the government watchdog
group Ohio Citizen Action.

“What are you going to do, let them die?” Turcer said.

“This is horrible,” she continued. “Patients are forced to move far away
from their families. And Ohio has its own budget crisis right now. We’re
struggling, too.”

Weldon doesn’t buy the argument that West Virginia can’t afford to help her
return home. She thinks state officials are taking the easy way out.

“I am a native West Virginian. My family put in more than 260 years of
working and paying taxes in the state,” she said. “Then when I needed help,
I had to go to another state to find it.”

To contact staff writer Scott Finn, use e-mail or call 357-4323.