Parents of 31 profoundly mentally retarded
residents of a skilled nursing home in the western suburbs are protesting
the state's plan to move them to small group homes, as required by
a recent legal settlement involving more than 600 mentally disabled
patients.
The parents say the lack of round-the-clock care at the group homes
would not meet the needs of their children, who suffer from serious
medical conditions, cannot talk or walk, and have a mental age of
less than one year.
"I think my son could die, easily," Clara Sheehan of
Shrewsbury said of her son Patrick, 22, if he were forced to move
from the Seven Hills Pediatric Center, a nursing home in Groton,
to a group home.
Sheehan said she fears Patrick, a quadriplegic who has cerebral
palsy and a tendency toward massive seizures, could suffer a medical
setback and not receive adequate care in the new setting. "He
could catch pneumonia or have a seizure, and no one would notice,"
she said.
The legal settlement stems from a 1998 case filed against the state
in US District Court in Springfield by the Center for Public Representation,
a Newton-based nonprofit law firm representing people with disabilities,
on behalf of Loretta Rolland and other state-supported patients
with mental retardation or other mental disabilities in nursing
homes.
At the time, there were about 1,600 such residents across the state,
according to the Rolland settlement agreement. About 1,000 since
have been placed in community homes.
The lawsuit hinged on the argument that, according to federal law,
the mentally retarded must be provided with the opportunity to exercise
personal choice, participate in and contribute to the community,
develop and sustain varied and meaningful relationships, and acquire
skills that increase self-reliance. That kind of treatment is offered
in small group homes, but only rarely in nursing homes, the lawsuit
says.
The settlement in June says that by 2012, the state must create
640 new community placement slots for the mentally retarded and
disabled, and transition that number of nursing home residents into
them. The 31 Seven Hills residents are on the list to be transferred.
State Assistant Secretary of Health and Human Services Jean McGuire
said the state is obliged to heed the agreement, but noted the moves
are part of Governor Deval Patrick's $20 million initiative, called
Community First, to provide community homes to more than 30,000
disabled and elderly, some of whom now live in nursing homes.
"It's all about giving people - even people with intellectual
impairment - a choice," McGuire said.
Sheehan doesn't see how a move helps her son. She represents one
side in a clash of views about how to care for the disabled. Some
believe they should be placed in small group homes with four or
five residents. But others - particularly advocates for the profoundly
retarded with multiple life-threatening medical conditions - say
they need the specialized care of a skilled nursing home.
Some Seven Hills parents said they believe the state is complying
with the agreement in a bid to find less costly care. The average
price tag for a resident at Seven Hills for room and board is $330
per day, with an additional $67 a day for activities, according
to administrator Holly Jarek. The fees are paid by Medicaid.
The parents say a group home probably would be less expensive because
it wouldn't provide 24-hour-a-day medical supervision. But the state
maintains that costs associated with community placement are comparable
to those at Seven Hills. "All group home settings have 24-hour
monitoring or oversight," including nursing care for those
who need it, McGuire said.
Sheehan, who has worked as an adult day-care aide, argues that
her son differs dramatically from those who might benefit from the
settlement.
Patrick "was actually born dead and it took them 15 minutes
to revive him," Sheehan said. Her son has cerebral palsy and
suffers from frequent seizures, sometimes as many as eight in a
row.
He cannot talk, and has few reactions other than smiling sometimes
at voices he recognizes. He is fed through a tube. He requires a
custom-made wheelchair.
Until their son was 18, Sheehan and her husband cared for Patrick
in their home, with the help of registered nurses. At that point,
doctors advised Sheehan to place Patrick in a nursing home, she
said. He has been at Seven Hills for four years, and now receives
the medical monitoring he needs, said his mother, in an emotional
interview.
Seven Hills parents say they are furious that, as legal guardians
of their children, they were not given notice of the decade-old
court action until this spring, or a choice of whether they would
be included in the settlement.
"I'm very frustrated," Sheehan said. "I feel like
I have no rights."
The parents say Seven Hills provides the extra-medical social activities
required by law, such as trips to the movies and activities providing
stimulating sounds, smells, and interaction with an aide.
"I just want this all to go away," Sheehan said. "I
just want my son to be able to stay where he's happy."
Moreover, they say, the agency has not evaluated the medical conditions
of the people on the list, and does not have the expertise to do
so.
McGuire said the list was developed after only "preliminary"
evaluations. Over the next four years, she said, the agency will
work with clinicians, guardians, and family members to assess each
individual's ability to handle and benefit from a community placement.
Stephen M. Sheehy, an attorney representing the parents, said he
has filed a motion to decertify the class represented by the lawsuit
and appealed the settlement. If those measures fail, Sheehy said,
he hopes the state will reconsider who is appropriate for transfer.
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