| 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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