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VOR Weekly E-Mail Update
March 7, 2008
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Table of Contents
CALIFORNIA NEWS: One family’s struggles mirrors national
challenge
1. Finding a place for the state's severely mentally ill
/ The policy of clearing California's institutions is nearing
the end. Left are the cases that are most difficult to relocate
2. The rest of the story: California couple spends
$30,000 in fight to keep brother at Lanterman / Jim and Ann
Grivich call for improved IPPs, community safety
Coming Up: March 14 - Targeted Case Management Rules take
effect; Governors file lawsuit to halt implementation, plus
federal legislation introduced. March 21 – State News from
Oregon, Washington and other states.
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1. California: Finding a place for the state's severely mentally
ill / The policy of clearing California's institutions is
nearing the end. Left are the cases that are most difficult to
relocate.
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By Garrett Therolf
Los Angeles Times Staff Writer
March 6, 2008
Jim Grivich had always known that one day the letter would
arrive. He'd worried about what to do if it came, discussing it
with his wife over dinner and with his mother as she lay in bed,
dying.
Still, when he got the letter in 2006 informing him that his
brother Bobby would have to leave the state institution where he
had lived for more than three decades, he was dismayed. Grivich
scrutinized it, looking for a way out. His only chance to fight,
the letter said, would be a hearing at a mental health court in
Los Angeles.
At stake was the future of a severely developmentally disabled
man with extraordinary needs. Now 60, Bobby still smears feces
on the wall, hits people when he is around large or noisy
groups, shouts "no" when his schedule is disrupted. He also has
a sweet side, smiling when someone takes the time to play
peekaboo with him.
For four decades, California has been trying to place
developmentally disabled people like Bobby in less restrictive
facilities, moving them out of large state hospitals and into
community care.
Now, as the state nears the end of the deinstitutionalization
process, it is faced with finding new homes for its toughest
cases. And it is coming up against increasing resistance from
families.
From the time he was in his 20s, when his mother realized she
could no longer accommodate his needs, Bobby has lived at
Lanterman Developmental Center in Pomona. He sleeps in a
dorm-like room with two other men, spends much of his day in
group activities and eats well-rounded meals that have been
approved by nutritionists. Grivich believes his brother is
content and well cared for; his simple needs always met.
Grivich, of West Covina, promised his mother before she died of
colon cancer that he would look after Bobby and worried that his
brother would die if he had to move.
Grivich and others joined the resistance movement: fighting to
save what remains of some of the state's most-disquieting
institutions.
The policy affects the future of 2,761 mentally retarded,
severely autistic, or brain damaged Californians, the system's
eldest, frailest and neediest who have highly trained caretakers
always at their sides.
When Bobby Grivich arrived at Lanterman Developmental Center in
Pomona, the facility was the oldest institution in the state for
the developmentally disabled. At the time, more than 13,000
people lived in the 12 publicly funded institutions statewide.
Lanterman alone housed more than 2,800 at its peak.
Since 1969, five institutions have closed and another is slated
to shutter this year. At Lanterman, 498 people remain, sharing
320 acres, 1,382 paid staff members, 86 buildings and a
$111.8-million budget.
In this spacious world, Bobby moves haltingly through the
mission-style buildings. He stops and plays with a rattle, or
sometimes a tambourine. More often than not, he sits in the
corner, a lip pressed against his nose.
Caregivers roam about the day room, playing guitar and singing
long-ago songs like the Beatles "Yellow Submarine." Bobby has
not lived in the outside world since the song was a radio
favorite.
Some of the attendants know Bobby so well they understand the
gentle gestures, such as a hand on the shoulder, that work best
to move him peacefully from one place to the next. And when he
strays from the group, as he likes to do, the wide open space
and slow moving cars allow him to walk unharmed.
At lunch, one of his usual attendants quietly separates him from
the rest of the group so that he can sit at a table alone with
soft foods. No risk of fighting over food that way.
Community settings, however, have been widely accepted as an
improvement for the vast majority of developmentally disabled
people, in part because hospitals had earned a reputation as
purveyors of lobotomies and shock treatments. Some supporters of
community settings say the freedom found on the outside gives
developmentally disabled people "the dignity of risk."
But the Griviches and a growing number of other families say
that risk threatens too much.
"It's a matter of life and death," said Terry DeBell, president
of the private organization for families of developmentally
disabled people in California institutions.
Since Bobby's arrival at Lanterman in 1969, staff reports always
concluded that the barriers separating him from the outside
world were insurmountable. Doctors said his IQ is eight, and
that he never will develop past the level of an average
18-month-old. He lacks strength in his bones, chokes on food and
wanders away without any sense of danger.
Jim Grivich's reasons for keeping Bobby at Lanterman were
manifold: staff at the institution have more demanding
credentials; he believed more safeguards were in place to
prevent Bobby from harming himself or others; no one was making
a profit off Bobby's care; and his mother insisted on it as her
dying wish.
Jim took responsibility for Bobby when his mother died in 2003.
Years had passed since he had driven down the long tree-lined
driveway at Lanterman, and he barely remembered the 80-year-old
expanse of mission-style buildings, nor the tawny hills that
surround it.
On the surface, Lanterman resembled the college campus his
mother once had hoped Bobby would attend. New patients trickle
in -- five in 2007, whose conditions were so severe there was no
other place for them -- but far more are holdovers from long-ago
decades. The average tenure for residents living at Lanterman is
43 years. The oldest is 84.
Almost all of Jim's memories of his brother were formed before
Bobby turned 21, when his mother still woke to the sight and
odor of his bedroom covered with feces. At that age, she finally
agreed to institutionalize him. "She did not want to chain him
up or lock him up," Jim said.
When Jim became Bobby's conservator, he found that his brother
had become an old man. He had the same long nose, but his hair
had grayed and his cheeks had hollowed.
Socially, he was still an outcast. He avoided others, often
sitting in the corner with his chin in his hand. "He's a little
bit of a loner type," said Monica Lopez, a Lanterman staff
member.
He rarely spoke, and when he did, it was with the disposition of
a toddler. He recoiled when others try to touch him. Jim doesn't
try anymore.
"He doesn't know who I am," Jim said.
The institution was the first of its kind in California when it
opened in 1917 as the Pacific Colony for the "insane",
"feeble-minded" and "high-grade imbeciles."
Some of the first residents had been stowed in attics by
shame-stricken families. The state's approach was not entirely
different. The Pacific Colony, for instance, was far from
existing railroad lines, and it was difficult to reach.
But it tapped into an overflowing need. By 1949, the 1,925
residents at Lanterman outstripped the institution's capacity.
In those early decades, some residents were sterilized, others
were restrained for days. When patients displayed excessive
anger, lobotomies were performed.
Longtime figures in the mental health field remember public
opinion rising up against the institutions as stories of
atrocities leaked out. When "One Flew Over The Cuckoo's Nest"
was published in 1962 -- a hallmark novel about a fictional
insane asylum in Oregon -- it helped cement the public
perception that mental institutions were barbaric places.
In 1963, a reporter for what was then the Santa Ana Register
wrote an expose after visiting a state institution for the
developmentally disabled in Costa Mesa, finding the conditions
to be filthy and the residents to be ill fed and unwashed.
Vivian Walter, the mother of a developmentally disabled person
and a prominent advocate with the Assn. for Retarded Citizens,
criticized the system during testimony in Sacramento.
"There were sights there that will haunt me for the rest of my
life," Walter later recounted in a documentary before her 2002
death.
The Legislature upended the system with the passage of the
Lanterman Act in 1969, named for Frank D. Lanterman, the
assemblyman who sponsored the bill. For the first time, a law
laid down a definitive preference for community placements over
institutional commitments for every developmentally disabled
person in the state.
It placed an emphasis on the rights of the developmentally
disabled to make basic life choices, even if those came with the
risks of living in the outside world. In 1979, Bobby's home was
renamed after Lanterman.
In five decades, people at the Pomona institution and others
like it had been officially recognized as "inmates," then
"patients", and finally "consumers." A "consumers bill of
rights" is posted throughout the grounds at Lanterman,
emphasizing the right of residents to live the most
self-directed lives possible.
Still, the facility is bedeviled by occasional claims of abuse.
Last year, the U.S. Department of Justice wrote to Gov. Arnold
Schwarzenegger that, "we find that residents of Lanterman suffer
significant harm and risk of harm from the facility's failure
to: keep them safe; provide them with adequate training and
associated behavioral and mental health services; and provide
them with adequate healthcare."
The most serious charge, investigators said, involved a man who
was found stomped to death in his room in 2002. Suspicion
pointed mostly to his roommate, but the Justice Department said
a Lanterman staff member could not be eliminated as a suspect.
In any case, the investigators said the institution should have
prevented the death.
The investigators also alleged that Lanterman staffers have not
always adhered to stringent reporting requirements when a
resident has to be restrained by force or chemicals.
Family members, however, took the report as an encouraging sign,
not an alarm to rescue loved ones.
"We take these allegations seriously and made sure they were
addressed, but this sort of report is exactly why we like
Lanterman. Every organization has its bad apples. This type of
scrutiny of their actions never would have taken place in the
community," said Robert Hazard, who leads the family group at
Lanterman and whose sister lives there.
"I'm not worried," Jim Grivich said.
Every year, court hearings are scheduled in a Los Angeles mental
health court for each person at Lanterman to determine what is
blocking their transfer to the outside world. The presumption is
that each person's goal is to live beyond the walls, in the
community. If the reason for staying isn't good enough, a judge
orders them out.
In some cases, advocates allege that the urge to push residents
into the community is so single-minded that innocuous or
meaningless acts are interpreted as evidence the person wants to
leave.
One man packed his radio to take with him whenever he went
anywhere, an action that was interpreted as meaning he wanted to
pack up and leave the developmental center. Advocates pointed
out that he died a year after he was moved out.
Terri Delgadillo, director of the California Department of
Developmental Services, defended the system. "When decisions are
made," she said, "that decision is an extremely comprehensive
decision, and it involves an extremely comprehensive process. If
a person has nonverbal communication, that might be one piece,
but it is not the whole piece."
In Bobby's case, furtive signals weren't the issue. A placement
team led by case worker Rhoda Tong in January 2006 determined
that his needs and desires were the same as always. And, she
determined, there was a new group home that would finally meet
those needs.
Jim and his wife, Ann, took Bobby for a visit to the San Gabriel
Valley location. Jim took out his notepad and camera and --
leaning on his experience as a college administrator --
documented a list of violations, including exposed electrical
wiring and a bedroom with no direct door or window leading
outside. Jim reported the violations to the city, which issued
citations.
At least on this day, the Griviches felt they had won, if only
the promise of more time in limbo for Bobby.
Tong, Bobby's case worker, has since been asked to prepare a
report every few months on what barriers remain to moving Bobby
to a different group home.
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2. The rest of the story: California couple spends $30,000 in
fight to keep brother at Lanterman / Jim and Ann Grivich call
for improved IPPs, community safety
------------------------------------------------------------------------------------------------------------------
California Association of Psychiatric Technicians
Posted on the CAPT website
www.psychtechs.net
May 21, 2007
When Jim and Ann Grivich inspected the community facility that
was scheduled to start housing Jim’s brother Bobby, the couple
couldn’t believe what they saw and heard.
The home that was supposed to be a safe place for Bobby to live
was anything but.
So the Griviches stood up and fought to keep their brother at
Lanterman: a battle that cost them $30,000 and untold amounts of
heartache and headaches as they battled state bureaucracy and
policy agendas that called for community placement-- no matter
what the human cost.
ABOUT BOBBY
Bobby has lived at Lanterman for nearly 40 years. He is
considered profoundly disabled, with numerous medical and
psychological concerns, including severe osteoporosis, walking
problems, choking and a tendency to wander.
Bobby and Jim’s mother placed Bobby in Lanterman after it became
clear that the family just wasn’t able to care for him at home
anymore, most especially with the danger presented by the busy
street out front.
“It was clear he was going to either kill himself or someone
else,” said Jim Grivich.
Jim Grivich believes that, with its specialized staff and
singular purpose, Lanterman was the right choice for Bobby.
“Community placement is appropriate for the category of people
who need less help, such as some people who have Down’s
Syndrome,” said Jim. “But there has been a push towards
community placement for everyone by people who have no idea that
there are others much more disabled -- people like my brother.
“LDC provides a certain level of services for the profoundly
disabled, with professionals who are knowledgeable about medical
services, psychological services and medications. And my brother
isn’t alone.”
BATTLING FOR A BROTHER’S SAFETY
Although Bobby continued to do well at Lanterman, others began
taking it upon themselves to place him in the community.
As Bobby’s legal conservators, the Griviches were shocked when
-- in September 2005 -- the annual HOP hearing was held without
anyone even telling them about it. Although the hearing held
that Bobby was “appropriately placed” as a Lanterman resident,
the public defender took the ball and ran with it, insisting on
an additional “barriers to community placement” hearing.
Next came a “special meeting” with a regional project staffer
who oversees clients’ community placements. The staffer said
Bobby didn’t have enough barriers to placement, so he would be
placed in a pre-selected community home.
And the couple soon discovered that the staffer would be passing
off this “no barriers” report to a court as an Individual
Program Plan, which is an official document outlining client
care. At this suspicious meeting, there were only a few people
present -- far from the dozen or more usually required. Nor was
Bobby present, as required by law.
“We were just told, ‘He’ll be placed,’” said Ann Grivich. “So we
called for our own, real IPP meeting with all of the required
stakeholders. We went over his needs as outlined in the official
document and our desire he stay at LDC with the professional
staff, only to be told by the regional project manager, ‘Those
requirements aren’t a problem; we’ll just change the IPP to fit
community placement.’ We couldn’t believe it.”
The Griviches finally helped create a very detailed IPP
outlining everything Bobby required, including licensed staff
24/7 and care equal to or better than what’s provided at
Lanterman.
But even this wasn’t enough to keep community advocates from
trying to place him.
“The public defender made the regional center search the entire
state for a home meeting Bobby’s needs, even though the IPP
requirement is that the home must be within 10 miles of ours so
that we can easily visit and be able to supervise Bobby’s care,”
said Jim. “The search turned up nothing, but it cost us
thousands of dollars in legal fees. They appear to want to
bankrupt families who dare to stand up and fight. Luckily, my
mother left me the money to fight for Bobby.”
RED FLAGS
The chosen community home was further than the 10-mile radius
required in Bobby’s final IPP, but in the Griviches’ general
area. Not only did the home not meet Bobby’s many IPP
requirements, but dangers also lurked around every corner.
Upon visiting the home, Jim and Ann were stunned by what they
found out. Numerous issues presented an immediate danger to
Bobby and other clients who were scheduled to move in that very
day, including major electrical work in progress done by an
unlicensed employee (without a permit) that resulted in an
exposed electrical panel, as well as live wires dangling from a
wall in a bedroom (also built without a permit); an illegally
constructed bedroom for Bobby that had no outside exits, as
required by fire code; and a nighttime employee who would sleep
in an additional illegal bedroom in the garage, far away from
clients in need of help.
And with the house offering a “home-like” atmosphere, clients
were free to come and go as they chose and to help themselves to
food in the kitchen. With Bobby’s choking and wandering issues,
this “home-like” facility put him directly at risk.
“Just the bowl of fruit on the kitchen counter could kill him,”
said Ann.
And as for the employees and owner, “They didn’t even understand
what we were talking about when we mentioned Bobby’s IPP,” said
Jim.
When they asked if employees were licensed, they found out that
those caring for Bobby and his many physical and psychological
needs would be high-school graduates with just two weeks of
training.
“You need to be educated to state standards and licensed by the
state to paint fingernails or trim hair, but I guess you don’t
even need that to take care of Bobby,” Ann said bitterly.
“They told us, ‘Well, the facility’s got a license, so it must
be OK, right?’” said Jim.
RED TAPE
Even with all of these problems, the facility indeed had a
license. But how did it get and maintain one? That’s what the
Griviches want to find out, but have yet to hear a clear answer
from anyone.
The couple contacted the licensing office, the city building
department and the fire marshall. Their complaints were
substantiated, and the city even found many more deficiencies.
Although the judge in the Griviches’ case eventually refused to
allow Bobby to be placed in the prospective home because of the
many safety concerns and the needs reflected in his IPP, the
home has remained licensed to this day. Despite the safety
hazards -- many of which still exist more than a year later --
three other clients have been placed in the home and the license
remains intact. What’s more, construction work continues with
clients still in the home.
With Bobby still safe (for now) at Lanterman, the couple’s
concern for these other clients has led them to continue their
fight against unsafe conditions, which various agencies say have
“been taken care of,” although many haven’t been.
“In spite of our substantiated complaints, the licensing office
refused to suspend the license until the necessary corrective
work was completed,” said Jim Grivich. “These clients are in
danger.”
URGENT CHANGES NEEDED
To help clients and families in situations like theirs, the
Griviches are pushing to improve IPPs and ensure that licensed
community homes are safe.
On IPPs, they recommend making sure that they are accurate,
detailed and correct. For instance, Bobby’s initial IPP included
very broad statements, such as “all supports must be in place.”
But this vague language provides lots of wiggle room for those
insisting on types of care that may not be in the client’s best
interests.
“These statements can let people get away with no supports for
clients,” said Ann. “The judges -- like our judge -- pay
attention to the IPPs. When documents come out of Lanterman,
they have to be right.”
And on community home licensure, the couple is calling on the
Department of Developmental Services, the regional centers and
the licensing agencies to stop the finger-pointing and
ball-dropping.
“Licensing must make sure these facilities are safe, period.”
said Jim Grivich.
Can Psych Techs do to anything to help?
“Specifically, Psych Techs can insist that every IPP requires
that every prospective home has passed fire, safety and code
inspections to state standards by licensed inspectors, and has
licensed Psych Techs and/or RNs 24/7 where appropriate (and
other specific needs of the client) spelled out in the
‘preferred future section’ of the IPP,” said Ann Grivich. “And
in general, Psych Techs can help by watching out for our family
members.”
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Tamie Hopp
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