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VOR Weekly E-Mail Update
May 12, 2006
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FOCUS ON MISSOURI
1. Families, state address risks to client care
2. Mental Health Dept. chief quits
AND ALSO MASSACHUSETTS
3. Massachusetts: Mayor proposes Fernald museum
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1. Families, state address risks to client care
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NOTE: VOR Board Member-Elect, Carole Sherman,
who is also being nominated
as VOR's Second Vice President, has traveled to
Missouri several times in
recent months to help the families advocate for
a full continuum of quality
residential care options, including state
Habilitation Centers. She has
interfaced with families, the media, employees
and public officials. She
cites a very effective and organized network of
family and worker
advocates.
Summary: Since taking office in 2005, Gov. Matt
Blunt has called for
closing the facility, citing questions about
patient mistreatment and
excessive cost. The move of residents is already
under way. The families
say Blunt has not responded to their many
requests to meet them. They plan
a "Mothers' Day" visit to Jefferson City next
week to demand a meeting.
Blunt's spokesman, Spence Jackson, said the
governor stands by his decision
to close Bellefontaine and believes it's in the
best interest of residents.
As for meeting with families, Jackson said the
decision to close the center
"has already been put in motion." Mary Vitale
said she finds the state's
"total disregard for families appalling." "My
brother has no voice except
mine," she said, weeping. "Bellefontaine
Habilitation Center is my home. I
do not want to move."
Families, state address risks to client care
Monday, May 1, 2006
By Cheryl Wittenauer
The Associated Press
ST. LOUIS (AP) -- Families of severely retarded
Missouri citizens implored
a mental health commission Monday not to shut
down the state's habilitation
centers, saying it would be "foolish and
dangerous" to close them.
They said the state could do more to enhance
resident safety by investing
more in staff and less in expensive consultant
contracts.
"Talk of closing habilitation centers like
Bellefontaine is completely
insane," said Bert Sterbenz, president of The
Greater St. Louis Parents
Advocacy Group for Mentally Retarded Citizens.
"Our governor doesn't know
any better, but you are supposed to."
He said a state-run habilitation center is
equipped and staffed to care for
the profoundly retarded and medically fragile,
and that moving them to
something less in the community could kill them.
He said the state can ill-afford to eliminate
any mental health beds to
keep pace with the 15,000 mentally retarded and
developmentally disabled
Missouri citizens who live with aging parents.
"What will happen when these parents begin to
die off?" he asked. "We need
every bed we can get our hands on."
The Missouri Mental Health Commission, a
seven-member board appointed by
the governor, met in St. Louis Monday for the
first of a series of meetings
statewide on how to ensure the safety of
thousands of vulnerable residents.
The hearings were prompted by two recent deaths
at the state-run Northwest
Habilitation Center for the mentally retarded in
suburban St. Louis. The
commission will incorporate the public's ideas
into a correction plan for
Gov. Matt Blunt.
The families said they were horrified by what
happened at Northwest, but
the answer is in fixing the problems, not
shutting down centers. They said
privately run centers aren't held to state
standards and their performance
can't be scrutinized. The families said the
state refused to turn over
incident and injury reports on private group
homes in Missouri.
Families said privately run group homes and
centers don't offer the same
services and environment as the state-run
centers, and won't tolerate their
loved ones' violent behavioral outbursts.
"These (state-run) centers are the last resort
for most families," said
Mickey Slawson, president of the parents'
association of Bellefontaine
Habilitation Center in suburban St. Louis.
"There's nowhere for them to
go."
Since taking office in 2005, Blunt has called
for closing Bellefontaine,
citing questions about patient mistreatment and
excessive cost. The move of
residents already is under way.
The families say Blunt has not responded to
their many requests to meet
them. They plan a visit to Jefferson City next
week to demand a meeting.
Blunt's spokesman, Spence Jackson, said the
governor stands by his decision
to close Bellefontaine and believes it's in the
best interest of residents.
As for meeting with families, Jackson said the
decision to close the center
"has already been put in motion."
"You people have no idea who my brother is, and
I'm tired of hearing how
the Department of Mental Health and the governor
know what is best for
him," said Mike Brophy, whose brother, Timothy,
has lived at Bellefontaine
for 40 years.
"Has anyone ever gone and personally talked to
someone who cares for Tim?
Until you do, you do not know him or what is
best for him."
In November, 24-year-old Michael Pallme, who was
supposed to be under
one-on-one supervision at the Northwest
Habilitation Center, died after
swallowing a pen. Pallme had a serious disorder
characterized by a
compulsion to ingest nonfood items.
The state could not substantiate abuse or
neglect against any individual,
but it continues to look at the case, Department
of Mental Health spokesman
Bob Bax said.
In March, Rutherford "Rudy" Wallace, 35, died
after suffering burns when a
worker at the same center placed him in
dangerously hot water, then put off
calling an ambulance for an hour. St. Louis
County Police are
investigating.
The commission has said it expects the
department to resolve any internal
problems that may have contributed to the
deaths. It also has directed the
department to ensure adequate staffing and put
in place other safeguards,
and to have a mechanism in place for raising
concerns.
Bax said the agency has centralized its
investigation process and assembled
a team to look at safety issues across its
centers. It's also working to
obtain adequate funding for staffing.
The Missouri Mental Health Commission will hold
hearings Wednesday in
Kirksville, May 10 in Columbia, May 15 in Cape
Girardeau, May 18 in
Springfield, and May 23 in Kansas City.
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2. Mental Health Dept. chief quits
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Summary: With the head of the State Department
of Mental Health retiring,
families are concerned about his replacement
and what that will mean for
the future of the state's residential facilities
for people with mental
retardation.
By Carolyn Tuft
St. Louis Post-Dispatch
The head of the state Department of Mental
Health announced his retirement
Monday, the same day the state held the first of
six public hearings to
examine problems in how the agency has protected
its patients from abuse
and neglect.
Dorn Schuffman, 56, will leave the agency July 1
after more than four years
as the head of a department that oversees
services for 170,000 people with
mental illness, developmental disabilities and
drug and alcohol addictions.
In a phone interview Monday, Schuffman said he
was not forced out. Rather,
he said, he "needed a break" from the rigors of
running the department,
including the annual budget battles and, lately,
the high-profile
investigations into abuse and neglect.
His boss, the Mental Health Commission, is
conducting one such
investigation after the Post-Dispatch uncovered
two deaths at Northwest
Habilitation Center, a state-run facility for
people with mental
retardation and developmental disabilities in
St. Louis County.
Michael Pallme died in November after swallowing
a pen. He was supposed to
be under constant supervision because he
suffered from a condition in which
he tried to swallow anything in reach. In March,
Rudy Wallace died days
after a worker put him in scalding water and let
him suffer for an hour
before calling an ambulance.
The Department of Mental Health did not publicly
acknowledge either death
until tips led the Post-Dispatch to ask
questions. The resulting publicity
led to outrage, and the Mental Health
Commission, appointed by the
governor, began its own investigation, including
holding the hearings that
started Monday.
Monday's hearing was held at the Metropolitan
St. Louis Psychiatric Center
on Delmar Boulevard. At the hearing, Shawn
DeLoyola, the head of an
advocacy group, accused the department of a
culture of coverup.
DeLoyola heads Missouri Protection & Advocacy, a
group that receives
special power from Congress to independently
investigate abuse and neglect
in the state. He said the department has to stop
worrying about the bad
publicity from embarrassing revelations.
"Forget about risk management. Forget about
silence, and just do the right
thing," he said.
Ken Wells, whose daughter lives at Northwest,
echoed the frustration of not
finding out about abuse and neglect. He sits on
the Missouri Health Rights
Committee for the Disabled, where, he said, he
reviews 30 to 40 allegations
of abuse and neglect a month. But he was never
told of either death at
Northwest, including the scalding that occurred
just 40 to 50 yards from
where his daughter lives.
"That disturbs me," he said.
Speakers also questioned the broader ambitions
of the department to shift
more residents from state-run centers to private
group homes.
Parents of residents at Bellefontaine
Habilitation Center cited a state
audit released last year that found many private
group homes were not
properly reporting abuse and neglect.
Bill Wells told the commission there is no way
the private sector can take
care of his son, William, 51, any better than
Bellefontaine. He tried
private placement but his son almost died, he
said, when the private
workers failed to keep his feeding tube secure.
Commission Chairman John Constantino assured the
audience that the
commission would use all the input to help shape
a report to the governor
on how to reform the process.
"We absolutely take it seriously," he said.
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3. Massachusetts: Mayor proposes Fernald museum
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By Stephanie V. Siek,
The Boston Globe
May 4, 2006
Waltham Mayor Jeannette McCarthy proposes that
the Fernald Development
Center become a national historic site and park
dedicated to mentally
handicapped people.
McCarthy envisions the park including a visitors
center, museum, archives,
and recreational space. She wants current
residents permitted to remain
there the rest of their lives.
In a letter addressed to Governor Mitt Romney
and forwarded to President
Bush, Senators John F. Kerry and Edward M.
Kennedy, US Representative
Edward J. Markey, Judge Joseph L. Tauro, Maria
Shriver (The Eunice Kennedy
Shriver Center next to the main Fernald campus
is named for Maria Shriver's
mother), and the commissioners of the state
departments of Mental
Retardation and Capital Asset Management,
McCarthy laid out a grand vision
of what the center could do.
''A rededicated Fernald Center will pay tribute
to mentally handicapped
people throughout the country, promote an
understanding of and a commitment
to address their issues, and serve as a
testament to what our nation can
and should do for one of its most vulnerable
populations," McCarthy said.
McCarthy said a constituent suggested the idea
of a park dedicated to
mentally handicapped people. The mayor built on
the idea by including a
center for visitors to learn about the advances
in treatment and care that
were pioneered at Fernald, as well as the abuse
and mistreatment that
occurred there.
She wants a national cemetery to honor those who
spent their lives and died
at Fernald, and suggested that graves from other
state hospital sites being
redeveloped could be relocated there.
Dick Powers, a spokesman for Department of
Mental Retardation Commissioner
Gerald J. Morrissey Jr., said it was premature
to comment on the mayor's
idea, but he said the department couldn't
support any plan that called for
the residents to stay there.
''The Department of Mental Retardation and the
administration have made a
policy decision to close Fernald," Powers said.
''We would not support any
plan that runs counter to that."
Councilor Thomas J. Curtin, whose ward includes
the Fernald site, said he
supports any idea that preserves open space at
the site.
''The only concern I have in making it a
national park is that we have
taken ourselves out of the game, so to speak,"
Curtin said. ''We [the city]
then lose control."
He added that he was disappointed that he hadn't
heard about the plan until
after it had been sent around, he said. ''But
she's the executive, so
that's her prerogative."
The state has called for the center's closure
and transfer of its residents
to small group homes, but a federal judge
ordered the transfer stopped
until an independent monitor can report on how
already transferred
residents have fared.
As of the end of last year, 199 people remained
at Fernald. Ranging in age
from 35 to 93, they are among the most
profoundly retarded and severely
handicapped people in the state. Many have
physical handicaps and medical
problems that leave them unable to feed
themselves, bathe, or use a toilet
on their own.
Fernald League president Marilyn Meagher, whose
sister, Gail, lives at the
center, said the mayor's plan has her support.
''It sounds like it could become a
state-of-the-art facility and
environment for the mentally handicapped
residents of Massachusetts, and a
wonderful way to honor the past and present
residents that lived on that
land since 1888," Meagher said.
Marie Daly has been living across from the
Fernald land since 1950. She's
also part of a citizens group, the Fernald
Working Group, discussing what
should happen to the site. Daly was happy to
hear that the mayor's proposal
would preserve the historical value of the site.
''You don't want to wipe
out history because bad things were there," Daly
said. ''You want to
preserve it so it doesn't happen again."
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