| Parents of 31 profoundly mentally retarded
residents of a skilled nursing home here are protesting the state's
plan to move them to small group homes, as required by a recent legal
settlement involving more than 600 of the mentally disabled across
the state.
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.
"He would die," said Frank Voss, of Andover, about his
son Eric, if he were forced to move from the Seven Hills Pediatric
Center, a Groton nursing home, to a group home.
Voss said he and his wife fear that Eric, a 27-year-old quadriplegic
with cerebral palsy, could unexpectedly suffer a medical setback
and not receive adequate care in the new setting. "There's
no doubt in our minds that this would be the end of him," Voss
said.
The June settlement requires the state to move 640 residents with
mental retardation or other mental disabilities. State Assistant
Secretary of Health and Human Services Jean McGuire said the state
is obliged to heed the agreement, but noted the moves are also part
of a $20 million initiative by Governor Deval Patrick, 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.
The Vosses don't see how a move helps their son. They represent
one side in the clash of views over 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.
The legal settlement stems from a 1998 case filed in US District
Court in Springfield by the Center for Public Representation, a
nonprofit law firm representing people with disabilities, on behalf
of Loretta Rolland and others 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 settlement. 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 agreement 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.
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 another $67 daily fee for activities,
according to administrator Holly Jarek. The parents say a group
home is likely to be less expensive because it would not 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.
Voss, who manages a laboratory at Transform Pharmaceuticals
in Lexington, argues that his son, who was born with cerebral palsy,
differs dramatically from those who might benefit from the settlement.
Eric is fed through a tube. He cannot talk and has little affect,
except to smile sometimes at voices he recognizes. He requires a
custom-made wheelchair.
During his early years, Voss and his wife cared
for Eric in their home, with the help of registered nurses.
At age 17, after hip surgery, Eric went into a coma
for three weeks, suffering additional brain damage, Voss said. Afterward,
he needed 24-hour monitoring to prevent a similar episode, Voss
said.
At that point, doctors advised the Vosses to put
Eric in a nursing home, Voss said. He has been at Seven Hills for
6 1/2 years, and now receives the medical monitoring he needs, said
the father, 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 1998 court action until this spring, or a choice of whether
they would be included in the settlement.
"To think that they can do this behind our
backs, secretly, is an outrage," Voss said.
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. "This notion that placement in a community setting
is going to improve his life is total nonsense," Voss said.
Moreover, parents 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 to assess each individual's ability to handle and benefit from
a community placement.
Stephen
M. Sheehy, an attorney representing the parents, said he's filed
a motion to decertify the class represented by the lawsuit and has
appealed the settlement. If those measures fail, he said he hopes
the state will reconsider who's appropriate for transfer.
Online
Boston Globe Version Can Be Viewed Here |
