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“If you’re determined, you can make things happen.”
Several proposals in the General Assembly would help
younger people with disabilities move from institutionalized settings to places
they can call their own
BY ELIZABETH
SIMPSON
THE
VIRGINIAN-PILOT
2/6/05
Felicia
Goffigan’s skin is smooth as creamed coffee. Her lips are carefully outlined in
bold red. Her conversation, punctuated by the sound of her ventilator, brims
with hopes and dreams for the future.
Her exuberance
contrasts with most of her fellow residents at Sentara Nursing Center Norfolk.
The majority of the people around her are decades older, some near death, most
focused on the past rather than the future.
Goffigan is
28.
She has lived
among the aged and dying for a decade, ever since she had a spinal stroke that
left her paralyzed at 18.
Her dream is
to live, once again, in the wider sea of humanity, among people of different
ages, abilities and aspirations.
This year, in
particular, could be important in making that dream come true, as several
proposals in the General Assembly would help disabled people like Goffigan move
from the tiled, fluorescent-lit atmosphere of nursing facilities to homes and
apartments stamped with their own style.
This goal of
hers is next in a list of milestones that have been sporadic but momentous
during the past 10 years:
Learning to
speak after months of silence. Feeling sensation return to her right pinky
finger, then her hand, then her arm, to the point where she can use a cell
phone. Boarding a bus to go to a shopping mall.
Moving out on
her own will be her Mount Everest. Besides being dependent on a ventilator, she
needs around-the-clock care. But she has not lost hope.
“If you’re
determined ... ” she said, pausing while the ventilator breathed for her, “ ...
you can make things happen.”
Goffigan is
one of a growing number of nonelderly Virginians who live in nursing homes. The
exact number is unknown. But state officials count 3,760 people younger than 65
whose care in nursing facilities across the state is paid for through Medicaid,
the state and federal insurance that many disabled people rely on to cover
medical expenses. That’s one of about every eight Medicaid recipients living in
these facilities.
This
population is growing for a couple of reasons. Because of improved care, more
people of all ages are surviving accidents and disease. And traditional hospitals
aren’t keeping patients as long due to insurance limits.
Often that
leaves nursing homes as patients’ only resort.
Maureen
Hollowell has made it a mission to find these people. Hollowell is director of advocacy
and services for the Endependence Center. The Norfolk agency helps people with
disabilities live as independently as possible.
The push for
decades has been to move people from institutions to more independent-living
arrangements in communities. Most people prefer living on their own, and the
cost is generally less. But disabled people in nursing homes often have never
heard of the laws that afford them programs to live on their own. Too often,
these people are forgotten about, Hollowell said, and have no one to speak up
for them.
In some cases,
their disabilities prevent them from even vocalizing their desires, let alone
enabling them to lobby for themselves. Some don’t have families with the means
to assist them. And the process of moving is complex, full of paperwork,
waiting lists and financial barriers.
But several of
Gov. Mark R. Warner’s budget amendments before the current General Assembly
session would help.
• About $150,000 would be allocated to the Endependence
Center and 15 other agencies across the state to locate and help people in
nursing homes who want to move out. Advocates for the disabled are lobbying the
governor to increase this amount to $800,000.
• The state
Department of Rehabilitative Services would receive $150,000 to help disabled
people on a waiting list, both in nursing homes and those already living in the
community, to live in the least restrictive setting possible.
• Also, some changes are being proposed in the Medicaid
program to help people with disabilities make the move from nursing homes. Most
people who move back to their community do so through something called the
Medicaid waiver, which covers costs such as attendant care and medical
equipment. The waiver, though, doesn’t pay rent or moving costs. When a
disabled person lives in a nursing home or group home, all but $30 of his or
her monthly Social Security disability check goes to the facility, so it’s hard
for people to save money.
An amendment
to the Medicaid waiver would allow these people to receive a one-time $4,000
sum to pay for furniture, rent and utility deposits, and moving costs. About
$740,000, enough to cover the moves of 185 people, would initially be provided.
The House and
Senate money committees will be announcing their budget proposals Sunday.
Legislators are expected to reach a decision on the budget amendments before
they adjourn Feb. 26.
Hollowell, and
a host of people living in nursing homes, will be monitoring that process.
“There are a
lot of people in nursing facilities who can’t get out because they do not have
that initial set of resources,” Hollowell said.
Adren Ange can
vouch for that.
Ange can’t
speak or walk, but he has a gesture to express victory. The 37-year-old Norfolk
man puts his hands together and raises them in the air like a prizefighter,
first to one side, then the other.
It’s a gesture
he uses to describe his recent change of address. In December, he moved from Lake
Taylor Transitional Care Hospital into his own apartment.
It was not a
quick or easy move.
He had lived
at Lake Taylor – a long-term care facility in Norfolk – for 14 years. He landed
there after suffering brain damage in an apartment fire when he was 20. The
injury left him unable to walk, eat, speak or do other activities on his own.
He needs a wheelchair to get around. He communicates by pointing out letters of
the alphabet printed on a piece of paper.
When his
mother, Jean Ange, would visit from Currituck, he’d spell out a sentence: “I
have to get out of here.”
It took hard
work, reams of paperwork and patience, not just on Ange’s part, but for the
people at the Endependence Center. If not for his caseworkers, he said, “I would
have spent the rest of my life there.”
Ange was in
the first wave of people who signed up for a Medicaid waiver when the state
designed one for people with developmental disabilities in 2000. Last February,
his waiver finally came through. But even then, it took 10 more months to make
all the arrangements.
He couldn’t
receive more money from his monthly disability benefit check – which amounted
to about $560 – until he was discharged from Lake Taylor. But before he could
be discharged, Lake Taylor officials had to know he was being discharged to a
safe place.
The
Endependence Center ended up fronting the first month’s rent and deposit, until
Ange could start receiving his disability payments. He has diabetes, so he
needed skilled nursing care, which took more paperwork, and arrangements for a
nurse. He needed an attendant to provide personal care, such as help with
eating and dressing. And someone who could help him get out in the community.
And a system by which he could call for help if he needed it.
His limited
income meant he couldn’t afford most apartments, so he applied for subsidized
housing.
Once he got
all of that in place, he didn’t have any furniture. Fortunately, someone had
donated a sofa and chair and other furniture to the Endependence Center that he
was able to use.
“Every time
some new expense came up, we’d brainstorm how we could get it as cheaply as
possible,” said Debbie Eddings, Ange’s support coordinator at the Endependence
Center.
In mid-December,
he made the move to an apartment in a tower near Interstate 64 and Sewells
Point Road. He slept poorly the first night, out of both excitement and fear.
But he has
since grown more comfortable in his new apartment. One of the things he likes
about living independently is receiving his full disability check, rather than
only $30 a month. Even though he has to pay his rent, cable, utility and food
bills out of that amount, he likes having control over his finances.
Every day
brings new experiences. Learning to use a microwave and washing machine.
Getting his own mail. Playing a game of pool.
Even deciding
what to eat for lunch took getting used to, after 14 years of planned menus.
“I keep telling
him, ‘We’re on your schedule now. You are not in the nursing home, you have to
run this home,’ ” said June Turner, one of his personal assistants.
People like
Ange could ultimately help more people move out on their own, simply by
example. James Rothrock, commissioner of the Department of Rehabilitative
Services, said many disabled people in nursing homes are overwhelmed by the
complexity of the process.
“The biggest
barrier is the monumental task of putting all the pieces together. There is no
room for error, because they’re on life-sustaining equipment. So until you see
someone pull it together, it looks daunting.”
For every
Ange, there are many more waiting for services. Felicia Goffigan is one of 263
on the waiting list for the type of Medicaid waiver that Ange received. Nearly
400 already have moved out into the community using the waiver.
David Abraham,
administrator with the nursing home where Goffigan lives, said the home works
with people from the start to help them move out if possible. Some nursing
homes, such as Sentara centers in Portsmouth and Currituck, even have on-site
physical and occupational therapy centers to help people regain skills needed
to live on their own.
Just being on
the waiting list for a waiver gives Goffigan hope. When she first moved to
Sentara Nursing Center eight years ago, she worried she would be there forever.
Her father had recently died, so she was depressed. For a long time, she didn’t
have the motivation to do anything.
But she met a
resident at the center who was in his 40s and paralyzed from a gunshot wound.
He told her to stop feeling sorry for herself, and convinced her there was life
left to live.
She started
making ventures out of the nursing home. She first took a bus to Military
Circle Mall, a place she had shopped as a teen. She ended up stranded there,
when the bus picked up passengers at a different place from where she was
dropped off.
A dispatcher
came to pick her up, and said it would not happen again. As frightened as she
was, Goffigan decided to give it another shot. “The Bible says, ‘Walk by faith,
not by sight,’ ” she said. “So, I went out again.”
Since then,
she has taken classes at Tidewater Community College. She recently was
appointed to the Virginia Board for People with Disabilities. And she spoke
before a General Assembly budget hearing in January, asking legislators to
devote more money to centers for independent living, subsidized housing and
Medicaid waivers, so people like herself could make the move into homes and
apartments.
“I have lived
in a nursing home for almost 10 years, and I would be so happy to move out,”
she said. “I hope that next year I can come back and tell you how I enjoyed my
transition back to the community.”
STEPHEN M. KATZ PHOTOS/THE VIRGINIAN-PILOT Felicia
Goffigan, 28, has lived at the Sentara Nursing Center Norfolk for eight years,
after having a spinal stroke that left her paralyzed when she was 18. Now,
Goffigan wants to move out on her own and be a part of the community once
again.
Adren Ange, 37, plays pool in the recreation room of his
new apartment complex. Ange waded through volumes of paperwork in order to live
on his own after a brain injury put him in a long-term care facility for 14
years.
STEPHEN M. KATZ PHOTOS/THE VIRGINIAN-PILOT
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