Disabled people see case as ticket home

Plaintiffs: We're unfairly institutionalized

Concord Monitor Friday, November 30, 2001

By AMY McCONNELL
Monitor staff

Carol Holt has been stuck in institutions since a stroke at age 37
left her unable to speak clearly, walk or use her left arm. First, she lived
in a county nursing home surrounded by people twice her age. Then she lived
in a rehabilitation center three years longer than she should have.

After six years away, she badly wants to go home.

"I've got two daughters and three grandchildren," said Holt, a
plaintiff in a class-action lawsuit that claims the state is unfairly
keeping dozens of disabled people institutionalized. "I'd like to live a
life of my own again . . . I'd like to talk with them, play with them, the
way a grandmother should."

The lawsuit, which is scheduled for trial in U.S. District Court on
Monday, may make it possible for disabled Medicaid recipients like Holt to
live a more independent life. If it succeeds through trial or settlement,
the claim would force the state to pay for services that would let about two
dozen people move from nursing homes, psychiatric facilities and rehab
centers to private apartments or group homes.

Prospects for avoiding trial look bright, according to Sheila Zakre,
one of the lawyers handling the case for Concord-based Disabilities Rights
Center, Inc.

"We spent a lot of time with the judge yesterday," Zakre said. "It
looks like we're not going to have a trial on Monday."

Zakre declined to comment further, beyond saying she is still working
on the case.

In 1997, the center sued the state on behalf of two disabled women who
had been confined to nursing homes for decades - years in which they could
have lived on their own with some help from visiting aides, according to
their claim.

The women, Bonnie Bryson of Franklin and Claire Shepardson of Nashua,
were later joined by other plaintiffs who had suffered brain injuries from
strokes, debilitating diseases, falls, car crashes or diving accidents.
About 70 people with brain injuries were on the waiting list when the
complaint was filed.

Shepardson was one of them. After the birth of her son when she was
18, she was diagnosed with a rare form of muscular dystrophy: Nerves in her
spinal cord were wasting away, weakening her muscles.

At 26, she could no longer take care of herself and went to live at a
nursing home in Nashua. She lived there for the next 23 years.

During those decades, she shared a 10-by-14 room, ate whatever
hospital-style meals the nursing home served and struggled to connect to
residents more than twice her age. Many assumed she was mentally handicapped
and avoided her, she said.

"It was not where I wanted to be," Shepardson said. "The train of
thought with them was if you're in a wheelchair and you're young, you don't
have a mind."

In June, Shepardson finally got a house of her own, paid for with
state help, and the services to let her live there. Since then, she's had a
friend from the nursing home over for real food - fried egg sandwiches and
homemade macaroni and cheese. She got a puppy. And she hosted her entire
family on Thanksgiving.

"I told them, 'Everybody else doesn't have room. I do,' " she said.

The state does help pay for about 80 brain-injured people to live in
apartments or group homes that give them more independence.

The state, however, must split the cost of home-based services with
the federal government; the state and counties each pay a quarter of the
cost of caring for someone in an institution. So far, the state has only
requested the number of placements lawmakers would pay for, leaving some
people on a waiting list, according to Health and Human Services Assistant
Commissioner John Wallace.

But that waiting list is shrinking, he said.

Last year, lawmakers set aside an additional $1 million to pay for 25
more people to get in-home care like private-duty nursing service, physical
therapy, hospice care, case management and help with tasks like bathing,
dressing and cooking.

"We've made substantial progress in reducing this particular waiting
list," Wallace said. "We're working as hard as we can to have the
appropriate community services for everyone who needs them within the limits
of the money we've got."

What remains unresolved, he said, is whether the state must pay for
every brain-injured Medicaid recipient who can live outside an institution
to do so. The state, Wallace said, believes it is meeting its legal
obligation despite the waiting list, where about 25 people linger and will
likely be joined by others. The plaintiffs do not.

Regardless of whether lawmakers want to pay for such care, the
Americans with Disabilities Act demands it, according to the complaint. The
act, it states, says no public entity can exclude a disabled person from
benefits for which he or she is qualified. And that entity must rely on
non-institutional settings as much as possible, according to the complaint.

The state has failed to obey those rules in how they treat some
disabled people, the lawsuit states.

State officials, according to the plaintiffs, are also arbitrary,
irrational and discriminatory in how they pick the people who will get
in-home Medicaid services.

Some people are plucked from the waiting list; others are left behind.
But state officials, the lawsuit says, use no objective, written standard -
at least none they have shown anyone else - in making that choice, and so
discriminate against the people on the waiting list. The state therefore
violates their constitutional rights to due process, according to the
lawsuit.

Several people on that waiting list live at Crotched Mountain
Rehabilitation Center in Greenfield, where they came to relearn how to
speak, walk, work and care for themselves after suffering brain injuries. Of
the 22 New Hampshire residents in the adult brain injury unit, 15 are ready
to move on and have been for years and years, according to the center's
president, Major Wheelock.

Whether lawmakers are willing to pay for care outside an institution
isn't the point, he said. The precedent set by former U.S. District Court
judge Shane Devine, who ordered that children at the Laconia State School
must be moved into home-like settings, says they must.

"He didn't say, 'When you find the money,' " Wheelock said. "He said,
'Do it.' "

 

updated September 8, 2015